Simponi Synopsis


This blog receives a number of “hits” based on a search for Simponi. I have created this page to consolidate/chronicle my experiences with the drug to make it easier for readers to find. You can also do a “search” on my blog which will bring up the various times I’ve written about the drug. In addition to the information and comments here, there are a number of comments on Rheumatoid Arthritis Guy’s site related to this post: http://www.rheumatoidarthritisguy.com/2009/10/carlas-corner-all-about-simponi/

Starting Simponi

I started Simponi on August 12, 2009. I had previously been on Humira which was not working. I haven’t had any real pain associated with the injections. I had a slight bruise at the injection site of my third shot. I haven’t noticed any bad side effects and have generally been pleased with the relief of symptoms from the drug. Unlike Humira, I don’t do any real prep for the injection (ice packs before or after, etc.), but follow the directions to remove the injection from the refrigerator AT LEAST 30 minutes prior. Normally I take it out 45-60 minutes before the injection time.

First Injection August 2009

I had my first injection on August 12, 2009. I took it in the evening and the next morning, felt immediate relief. Unfortunately, the effects only lasted about a week before they started wearing off and after two weeks, I could tell no effects. I used the pre-filled syringe.

Second Injection September 2009

I took the second injection 30 days later in mid-September using the autoinject pen. It took a couple of days for the full effects of the drug to kick in, although I got some immediate relief (within 24 hours). The positive effects lasted for a full three weeks before they started wearing off. At the end of four weeks, the drug had completely worn off.

Third Injection October 2009

I took the third injection 30 days later on October 11, 2009. As of this writing (2 days later), the effects of the drug are apparent and the pain and stiffness is barely noticeable.

Update: It’s now been 10 days after the injection and I’m realizing that I’m not experiencing the relief that I did with the second injection. It’s still tons better than Humira, or no injection at all. It very well may be the extra stress that I’m putting on my body by working out more vigorously, or the rainy cold weather, or other factors that have nothing to do with the Simponi. One troubling aspect is that I’m suffering multiple times a day with what I call the itchy welts that I’ve come to associate with inflammatory response in my body. I’ll get an itch — usually on my hands or arms, but it could be anywhere — and as soon as I scratch my skin will become inflamed with severe itching and welts. I’ll keep you posted.

Update: Two weeks later and the positive effects of Simponi are definitely waning. Not only are my normal aches and pains starting to come back, I’ve noticed pain and swelling in my right wrist and both ankles, as well as increased symptoms in my left knee. This is troubling because I will be going to London next month about 2 weeks after I take my shot. Looks like I need to take a lot of Tylenol with me as well.

Update: Three weeks after the injection, I can’t tell it’s working at all. So it apparently starts wearing off after two weeks and is completely gone after three. At least I hope this is as bad as I feel. I’ve got another week to go before I can take another shot and I don’t want to feel any worse than I already do.

Fourth Injection: November 11, 2009

I took my fourth Simponi shot on November 11. I normally have taken my shots (both Simponi and Humira) before I went to bed. But this time, I took it about 3:00 pm. It was amazing. I could literally feel myself feeling better as the drug took effect. By the end of the evening when I went to bed, I was feeling better than I had in a couple of weeks. The drug really, really works for me, I just wish it would last longer. The next time I see my rheumatologist is the same day my next shot is due, so she will be able to tell how much the drug has worn off by the end of the month.

No More Simponi

On December 9, 2009, my rheumatologist switched me from Simponi to Enbrel. While I was getting amazing results from the drug, they only lasted about a week. Since I will be taking Enbrel on a weekly basis, hopefully this will be the answer for me.

 Breaking News – October 19, 2009

(RTTNews) –  Monday, Centocor Ortho Biotech, a wholly owned subsidiary of Johnson & Johnson (JNJ: News ), said new long-term data from two pivotal, Phase 3 clinical trials showed that patients with active rheumatoid arthritis receiving Simponi every four weeks achieved sustained improvements in signs and symptoms and physical function response through one year.

Rheumatology Division at the University of Massachusetts Medical School in Worcester revealed that the new data demonstrate sustained efficacy of golimumab dosed every four weeks in patients with rheumatoid arthritis or RA who were previously treated with anti-TNF agents.

Findings from the study demonstrated that patients with RA previously treated with adalimumab, etanercept or infliximab responded to, and maintained response to, Simponi through one year.

Over 63% of patients receiving Simponi 50 mg achieved about 20% improvement in arthritis signs and 41% achieved a 50% improvement in arthritis signs and symptoms as measured by ACR 50 response. An ACR 50 response requires a patient to have a 50% reduction in the number of swollen and tender joints.

Simponi-treated patients who had discontinued previous anti-TNF treatment for any reason sustained improvements in physical function. The data also showed that 81% and 61% of patients receiving Simponi 50 mg recorded improvements from baseline in the number of tender and swollen joints, respectively.

In April 2009, the U.S. Food and Drug Administration and Health Canada approved Simponi 50 mg as a once-monthly subcutaneous injection for the treatment of moderately to severely active RA, active psoriatic arthritis and active ankylosing spondylitis. In October 2009, the European Commission approved Simponi as a once-monthly injection for the treatment of active RA, active and progressive PsA and severe, active ankylosing spondylitis.

119 thoughts on “Simponi Synopsis”

  1. No Drama Mama said:

    I found your blog through RA Guy and am looking forward to reading about your journey with Simponi. I have been taking Humira for 15 months, dosing weekly, and currently only getting 3-4 days relief. Last week my rheumatologist talked to me about Simponi but I was not ready to switch, I decided to retry Arava. 6 diarrhea filled days later, I am throwing in the towel for Arava and actively researching Simponi.

    How long were you on Humira before it became ineffective?

    • carlascorner said:

      I was actually on and off Humira from December 2008 until July 2009. I was doing the bi-weekly injection. I had to get off the drug in March in order to have shoulder replacement surgery in April. Then I was on it for a full three months before my rheumatologist switched me. Since it has been specifically shown to help people who did not respond to Humira, I think she made a good choice.
      I, also, was afraid to switch. Not that I was getting any relief from Humira, but it’s a scary thing to try a new drug with who knows what side effects. However, I trust my rheumatologist and had to agree that what I was doing wasn’t working. I haven’t had any issues (so far) with Simponi and the relief has been amazing. My experience has been very positive.
      Good luck to you. I’d like to hear back from you to see what you decide and how it’s going.

    • Hi everyone

      THANK you Carla for your blog. I’m new to this so not sure where or how to write. I started taking simponi bout a year ago and for past three months, been suffering severe side effects and was not sure what it was. Stumped my doctors. I suspected it was the simponi wearing off fast but my doctors didn’t believe me. After looking online, I see all these comments bout this drug wearing off fast, I am GLAD it’s not just me. There are others out there with same story, whom probably, as I did, thought it was happening only to them. Would love to hear from others thru email their experiences with simponi so that I may prepare a case to present to my doctors and educate them in the process. luckytobe36@hotmail.com is my addy… Thank you all, once again

  2. Hey,

    I’ve been using Simponi too, and I’m having terrific results after being previously unresponsive to almost all of the other biologics.

    If you want, check out my blog.

    rasuperbitch.blogspot.com

    – RA SB

  3. I was desperate this morning reading information about Simponi. I am on week 3 of only my second injection and my RA symptoms are so bad I can barely walk in the morning or write and type without severe pain. My rheumy says I need to give this 6 months before changing meds! Not sure if I can hold on that long. I was on Enbrel for 3 years and could run a mile and felt great. Except for hand x-rays that revealed otherwise about my condition, I thought I was doing good. That is the only reason she changed me to Simponi. Not sure where to go from here but I wish I had stock in Aleve with as much as I am taking now. LOL

  4. I have been taking Simponi for 8 months now after stopping Humira because it’s didn’t work for me any longer. At first, Simponi was great, although I did suffer a major respiratory infection after my first shot. Otherwise, all was going well until my fourth or fifth shot when I started noticing it was wearing off by the third week. Now into March, it seems to have worn off into the second week and have had to supplement with prednisone. Will now be asking my Rheumy to take me off as the daily fatigue and pain, combined with working and taking care of my kids, is just too much.

    • Christy said:

      I’ve been on Simponi since Sept 09. In March 2010, I noticed it was only lasting about 3 weeks..then 2 to 2 1/2 weeks. My Rheumy increased my dose to 2x a month and it’s still not helping. I’m also on methotrexate. I’ve tried Enbrel & not much relief. Remicade made me sicker than a dog and swelled up, Humira worked incredibly well but had swelling in my mouth about 3 days after my 3rd shot. I’m not sure if the swelling was due to the Humira or not. I’m tempted to try Humira again since it worked so well. I’m pretty frustrated with medications and am hoping I’ll find one that works well.

  5. great blog thank you

  6. What side effects have you experienced with Simponi?

    • carlascorner said:

      I really had no noticeable side effects (of course I wasn’t on it that long). The major issue I had was that it didn’t last as long as it was supposed to.

  7. Hello,
    I have just had my 1st shot of Simponi this morning, I am also on MTX weekly injections. The injection itself was ok but I am now really ichy, (my forearms) and have a burning sensation in my back… has anyone else experienced this?? I find it very hard to gauge my RA, I can walk pretty well in the morning, a bit stiff but not too bad, my hands, knees, feet are all swollen but again… not too bad but how bad is bad?? I am 37 and feel very angry to have this disease…

    • Alan Greensall said:

      Hi everyone. I took one injection of Simponi in Oct 2011. 9 months on I’m still suffering from itching legs. I have been through massive itching all over my body, and 50+ moles appeared on my back. The only good news was the Arthritis was improved over this period, and the effect only faded after July. The drug was yellow carded by myself and my consultant . The MHRA was monitoring Simponi on the Black Triagle list and has just removed it from the approval list . Be warned

  8. I saw your blog while researching simponi. Have you tried any of the infused drugs?

    • My father in law uses an infused drugs. It is very expensive and his insurance company controls the amount of medicine that he recieves and how often he gets his treatments. When he gets his treatments, he is in the office for 4 hours and is tired the rest of the day. He has had RA for 14 yrs and has very severe RA…..

  9. Amelia Walsh said:

    i have been on Simponi since last July 2010 the first 4 months was the best ever a dream come true i had my life back again i could move talk sit cook eat walk go shopping what i truly love then the month got shorter that horrible winter we had here i Dublin i bleam because when the weather got milder i got less pain and could get around better i also take Methotrexate once a week plus Tylex, zydol,Amitriptyline. i do get tired early in the evening but i don’t mind i am so looking forward to summer i can go a little further walking please god my Doctor Barry has been very good to me such intrest even that made me feel someone cared and was trying to get me to walk and move my body again he put hope in my heart now i have Heaven

    • sheila buddle said:

      hi arnelia walsh. i would really appreciate it if you could give me some feedback on simponi. have psoriatic arthritis and recommended to take simponi. use to take humuira but had awful side effects so would appreciate your feedback. i live in cork so good to hear from someone also in ireland.
      thanks
      sheila b.

      • Hi i recently started on symponi and am wondering if you have ever tried it and had any relief as my flare ups seem to have got worse. I tried humira and enbrel to no avail also i take mtx.I also would appreciate if you know of any groups etc that help with advice on arthritis as i suffer from psa and it has affected my lifestyle so bad its depressing like yourself in Irish from Belfast.

  10. John Benfield said:

    I was on Enbrel for 8 years doin great, then Nov. 2010 it seemed to stop working and I was not able to go to the gym and run like I usually do. Then I started with Cimzia, I have been on it for 2 months now and it has been slow to help, but they say it takes 3 months to get full results so I will keep it up till then. I have developed an upper resp. tract infection, mild but still there, don’t know what will happen with that but time will tell.

  11. Travis Williams said:

    Just finished the research program for Simponi. I feel good, I have AS by the way. I still feel pain in my hands and fingers, but nothing compared to before I started in the program. I only got into it because my insurance company would not cover Enbrel. I’ve been able to start working out again, I am a Diesel mechanic and was able to continue in my field of work. I am now done with the program and I am afraid that I will only revert back to my previous situation and I am pretty sure the drug is really expensive, so it’ll be back to eating pills on daily basis. This is the only medication I’ve been on in the last five years other than the high blood pressure pills. I hated taking so many pills everyday. I am glad that I did not experience the side effects that come along with this drug. So good luck to everyone on this drug, it is working for me.

    • Travis, I also have AS and I am curious to know for how long did you take Simponi and if the relief lasted the entire month. I will start taking Simponi soon and I really hope it takes all my pains, it lasts the whole month and that I do not have any side effects. You panic when you see the posible side effects… it’s crazy!
      For how long have you stoped? Are you still with no pain after this period of absense?
      Thank you so much for your answer and experience sharing.
      Thank you Carla for your blog!
      Regards
      Nuno

      • carlascorner said:

        Travis/Nuno: I hope you both find a treatment plan that works. Sometimes it takes longer than we’d like. Good luck to you both!

  12. I have given ,yself 4 injections of Simponi. I have relief about 3 days post injections, then feel great for about 2 weeks. I am a very active 29 yr old mother of 3 small kids and I coach baseball, as well as always at the ball park with my other children. Around week 3, I need to take Lortab to sleep at night because the foot, knee, and hip pain is so bad. The week before my injection, I feel every pain/stiffness. I was on methotrixate (sp) and had no relief with it. I was diagonsised with RA in Nov 2010. I have stop taking the methrotraxite (sp) due to stomach issues that I have been having on it. I will get an MRI done next month to see if there has been any increase in RA damage to my joints. I like Simponi, but I think I want more relief.
    My mother was telling me about natural supplements/changing diet to reverse the causes of RA. I want to believe that I don’t need to take this medicines with effects, but I really don’t see how taking herbs and stuff can change reverse the RA.
    So, I was wondering if any of you have heard about or tried natural supplements to control RA and if any of you have had any side effects from Simponi??

    • carlascorner said:

      Megs: Like you, I liked the relief that Simponi provided, but it just didn’t last. I’ve since switched to Enbrel and added Arava, and that seems to be doing pretty well. The fact that you inject Enbrel every week (instead of once or twice a month like Simponi and Humira) seems to help — you get a dose every week. Good luck to you.

    • Hi Megs. I tried a radical change of my diet, as per Dr. Fuhrman and some other whole foods oriented physicians, some people with RA are able to bring their disease into submission through a healthy vegan diet, combined with occasional water fasting. (True North in CA is a medically operated fasting facility for people with health issues.) The occasional water fasting piece is a key part of the diet for those with severe RA. (Dr. Fuhrman says it bludgeons the disease into submission.) I had lost 20 lbs on my slight frame with the disease, so fasting was not an option for me. All this to say that my cholesterol dropped 80 points into a very healthy range, but the diet didn’t touch the RA. I suspect what the diet has done is set my body up to be as healthy as I can be, while taking this massive drug and methotrexate. I am however seeing a local MD who practices integrative medicine, meaning he combines eastern and western medicine. He is working with me in the hopes of getting me off the drugs with the RA in remission. A fantastic goal….

      Since writing in July, have you tried anything?

  13. having gone through nearly all of the TNF inhibitors and now onto Simponi it will be interesting to see how it works…I have only had one dose and see no difference at this point but I am hopeful….
    Nan

  14. Charles Rabun said:

    MY wife has been on the Simponi for 4 months now. She has really appreciated the relief that she has received. Beginning this month she has started having headaches that have then turned into migraines. SHe also has had dizziness. Has anyone else experienced this with Simponi. She is also taking MTX weekly.

    • carlascorner said:

      Charles: I haven’t had those issues with Simponi (or any of the other biologics). However, I had similar side effects when I was taking Methotrexate. Good luck to you and your wife.

    • I have AS & started on the biologicals about 1yr ago & had brilliant results from Humira but developed severe migraines fortnightly. I changed to Enbrel & now Simponi with no relief of AS symptoms. The migraines seem to be coming back weekly on Simponi even though injections are monthly. My RA Dr said it’s not uncommon for some women to get the migraines with Humira but need to quiz her more re Simponi.

      • I was interested to hear about your migraines, because I am having them too. I have only had one dose of Simponi and am due now for my second one. My RA symptoms are gone and that part is good, but the headaches are really bad and I wonder if they are a side effect of the drug or just a fluke.

        Diane, age 75

    • I also had bad headaches from the first dose of simponi that turned into migraine. I also see a change in my moods, when I catch a cold it takes months for me to fell better again. I have also had severe horseness and could hardly speak . My skin itch all over, and I feel like some of my memory comes and go. I thank God that all my pain and stiffness are gone. I have been on simponi now for 1 year. Not to mention I also experience fatigue several times a day.

  15. Charles Rabun said:

    My wife’s dog just had puppies a few weeks ago. I know that she is to avoid exposure to live human vaccines. The puppies will be getting shots starting this Saturday. Puppy vaccines are live vaccines. Is this something she should be concerned with? The puppies are around her currently all day long.

  16. Connie Cheeseman said:

    I have been on simponi for 6 months now for AS, It is working really well. The only thing I have noticed is that for 24 hrs or so post injection I am totally lethargic. I was wondering if you have the same side effects from your injection.
    Thanks, Connie :)

    • carlascorner said:

      Connie: I really didn’t have any side effects that I could attribute to Simponi. In fact, I could feel it start to work and felt less pain and more energetic almost immediately. I’m glad it’s working well for you.

  17. Perri Whitney said:

    I was on the Simponi study drug for 5 years. Just got off of it 2 months ago. That was *not* by choice! My Insurance CO (BCBS) will NOT allow me to get a prescription for Simponi, they require me to fail on Humira first.
    I had great results and no side effects from Simponi and I would love to get back on it as I am now flaring and am only on Mthtrxte and it is doing so-so job while I am also taking Tylenol Arthritis to help.

  18. I am getting ready to start Simponi next week. After reading the blog, I am concerned on how long it may last. Many years ago, I started with Enbrel. It was amazing with almost immediate results. After about 8 years of use, I started to develop chemically induced Lupus – so I had to stop. My RA then switched me to Humira which worked well but not quite like Enbrel. I had some symptoms related to Acid Reflux, upset stomach and headaches for a couple of days after injection. So now I am getting ready to start Simponi – hopefully I will get great results. I have been of all drugs fr about 1.5 months and although I feel a lot better internally (head aches, stomach issues and Acid Reflux), my Arthritis has flared beyond belief. I am 46 years of age and cannot walk well as my ankles and tendants are inflamed. Of course it progressed up my legs, back, neck, TMJ (Jaw), shoulders and hand. I am in too much pain – but must push through.

    Will the Simponi be the answer – I hope.

  19. I have tried Humira, Enbrel, Cimzia and now Simponi in this order. Humira was not suitable, nor was Cimzia. I found Enbrel best of all however my RA Specialist said I should be even better. I have now been on the Simponi for three months and have gone backwards. With each one, I have also been taking Methotrexate once a week. I liked the Enbrel best of all and had much less joint pain. I have felt rather like a guinea pig however my Specialist is wanting the optimum treatment for me. Everyone with RA will have varying results with these treatments. It is unfortunately trial and error and hopefully one of the treatments will eventually be the most suitable.

  20. I have been on simponi for about six years now ,i went through the five year study and done very well oh i have psa by the way, but since last summer it has seemed to have lost its affect . sometimes it works great and i get three weeks relief but other times id swear that the injection i took was water . we had a lousey summer and our winter is much the same way maybe that has something to do with it… not sure really .these past few months i have had some anxiety about my health maybe its because i have felt good for so long and now im feeling crappy agian .i have to see my doctor this month id say its bye bye somponi .
    i think it would work great if i could take it twice a month .

  21. I have RA and Psoriasis and am on methotrexate and was taking Humira. I stopped taking the Humira because I couldn’t stand the pain with the shots. The medicine going in was awful. I have a pretty high pain tolerance but could not stand this. My doctor wants to switch me to Simponi. Has anyone taken the Humira and Simponi that can tell me how the shot itself is?

    • carlascorner said:

      Angela: I have taken Humira, Simponi and Enbrel. In my experience all the shots are similar. I have heard that some people find Simponi easier to tolerate because it has a different preservative in it that doesn’t sting as much. Good luck.

  22. Cat Frohloff said:

    Hi. I have psa and have been on methotrexate for 5 or 6 years. I was on ENBREL and it worked very well but was very painful to inject. I had a bad flareup after a trip and was switched to Humira. It worked too but not as well as ENBREL and I seemed to have more side effects and nausea and little infections. My swelling in my hands worsened and when I had to go off it for a surgery in January my Dr. decided we would try something else. So now I am waiting to see if the insurance will let me try Simponi. I have read all your blog comments and am worried about how it will last. I really need some relief. I cannot walk well and my left hand is not working that well. Cooking dinner at the end of the day is the hardest…just standing! I wonder about side effects but you seem not to have mentioned many so I hope that is a good thing. It is some what comforting to have this forum of “friends” in the same “boat”. thanks for that. I hope I can find this blog again in the future.

  23. Can someone please telll me if Simponi has helped their psoriasis

    • can someone please say is simponi can help psoriasis

      • Yes…i have had PSa + Ps for over 25 years. Simponi works for PSa -take 2wks x 2wks then Every 4 WK’s. À diet of high greens works for skin Ps. Takes 3-6 months for skin to clear (Vital Greens). Hope this helps

  24. Cat Frohloff said:

    Well I had my first injection on Tuesday this week and so far have no real change. Can anyone tell me how long it took for them to get some relief. Injection not too bad, about the same as Humira. Would appreciate any feedback.
    Thanks..Cat

    • carlascorner said:

      Cat: Most biologics take a while to work (up to three months for full effectiveness). Once you build it up in your system, though, you can really tell when it “kicks in.”

      • Cat Frohloff said:

        Thanks so much. My rep is away for 2 weeks and my pharmacist doesn’t know much about it yet. Much appreciated.
        Cat

    • GlassCityLady said:

      My first injection was Saturday, 4 days ago ~ haven’t noticed much of a change. I actually feel a bit achy in my arms, lethargic, and having night sweats…
      I am HLA-B27 + and being treated for AS.
      When can I expect to feel if the drug is working or not?

      • carlascorner said:

        The lead time for any of the biologics: Humira, Simponi, Enbrel, Orencia, etc. can be as long as three months. Hang in there.

  25. hi i have been on simponi for about six years .at first it was amazing but over the last year it seems to have lost some of its efectiveness .but i am still doing very well on it.

    • Cat Frohloff said:

      Well it’s been only 5 days but as of yet I don’t feel any different, one way or the other. I sure wish something would help…I think the ENBREL was the best actually but I hate the injection. I guess I have to give it time.

      • I found out that if you give the Enbrel injection in your tummy and do it below the belly button on either side that the injection does not hurt that bad and in some spots it does not hurt at all.

  26. Cat Frohloff said:

    Hi. I am happy to say that I have now had 3 injections , the first being in April, and my pain and swelling are much better. I also take .06 of Methotrexate. I am being treated for PA. I found a little relief with Humira but not much and the swelling was always present. I like that Simponi is only once a month and the injection isn’t too bad. I hope it will continue to help me. Good luck to all you fellow sufferers.

    • GlassCityLady said:

      Cat,
      After what injection did you feel better? I was on 4 wks of prednisone prior to starting Simponi… The prednisone WORKS so well ~ but not a long term treatment plan. Its been about 10 days since the injection and my “pre” prednisone pain in back and I feel crummy again:(
      Any thoughts….
      Thanks.

      • carlascorner said:

        I am hopeful that Cat will reply, but in the meantime, I’ll chime in that it was the second or third injection for me. Simponi worked for me, it just didn’t last as long as it should. It would wear off before the next injection was due. Good luck! Hopeful that you’ve found a good treatment plan!

  27. Cat Frohloff said:

    Hi. I started to notice that my swelling was down and pain lessened after the second injection. Now after my third one I feel quite a lot better. I was told that it often takes at least 3 or 4 to get into your system. I was on prednisone once but don’t like the weight gain and sort of withdrawal afterwards. I would not do it again myself. Are you also on Methotrexate? I need both as do many others. Maybe that would help you as well.
    Good Luck!

  28. shirley Staubs said:

    I begin tomorrow will let you know the outcome hope I will have good news

    • carlascorner said:

      Shirley: Good luck and do please let us know how you’re doing. Don’t get too discouraged at first, because for most people it does take a couple of injections in order to start realizing the effects. Thanks for your post.

      • jOE I stared on enbril and work great for about two months then started feeling that it was only lasting for about three days. I switch to humira the first injection was almost like a dream come true the 2 3 4 almost felt nothing a alot of pain was back now i am wating for simponi let you no how it works all these drugs are botherson

      • carlascorner said:

        Joe: Thanks for posting. Please let us know how you’re doing. Everyone who posts here helps others who are looking for information.

      • shirley staubs said:

        I go for my fourth shot on fri. for pain it really is doing the job I have very little pain, but my fatigue is still very bad. just hoping over time, as th inflammation clears up the fatigue will lessen. but so happy it got rid of most all pain. I am very thankful for simponi, thank you, shirley

  29. Did my first shot of simponi two days ago did not help to much

  30. I have recently been approved for SImponi (Pharmacare) after having allergic reactions or strong side effects from the “before-biologics- medications”. I have been reading the comments on this blog and have become concerned about the drug not working, injection pain and side effects. I wasn’t before. I suppose everyone’s reactions are different, both physically and mentally, but I do know that, like most drug treatment programs, they will take some months to actually work long term (so says my RA doc). I have not been told that they are expected to work immediately and then, manage a sustained level of pain and swelling relief until they have been in the system for awhile. I was hoping if it does work long term, that I could begin running again; however, my RA Dr., physiotherapist and Occup. Therapist have told me that running is one of the worst forms of exercise for someone with arthritis! I wonder, if those folks who are working out through running, hard and often, are not adding to the loss of efficacy of the Simponi? Apparently, we should be using an elliptical trainer as it is much gentler on our joints. So, I have given up running for good and am looking for a yoga program, along with an elliptical trainer to continue exercising. Also, I have been counselled to drop 10 pounds of weight, eat less foods from a can or box and take folic acid (5 mg) for four days per week to battle the fatigue. This is the first time, ever, I have truly followed a health plan set out for me. However, what I am wondering is, if both sides of my immediate family have much cancer, will I be at greater risk for the lymphoma side-effect when using biologics long term? Have any of the previous commentors on this blog experienced any cancerous side effects and does anyone know anything about how much more at risk people with arthritis are for cancer (stats.)?

    • Hi Jill,

      I started on Simponi for AS (HLA B27+) in July and had my 2nd injection a few weeks ago. Have I noticed an improvement- No, but like you, the RA said it can take months…bummer… Wish Prednisone was not so terrible on the body, because it always calms down a flare-up.

      I am also a runner – I’m running until I can’t. For me at least, running is the best “mental” therapy and I’m not willing to give it up. I have cut back on my distance and frequency – I run about 3 miles, 2-3 times a week and bike or swim 2-3 days. I usually workout 5 days a week.

      I try to avoid the gym- the elliptical trainer bores me to tears. I ran a ½ marathon in April and my body hasn’t really bounced back – still very achy and low energy.
      MY RA has not told me not to run… just listen to my body. Heal and Achilles tendon pain will sideline me- so I try to pay attention to how I’m feeling.
      For me, I feel tons better after a hard work out and weight-baring exercise is good for your bones:)
      My OBGYN recommended I start taking Coenzyme Q10, Glucosamine, and Calcium and Vitamin D. I also take B12…

      I am willing to try anything ~ I do hear what you are saying about the risk of cancer, but statistically the odds are so small. My attitude is Carpe Diem – seize the day & enjoy a good run.

      • Cat Frohloff said:

        You say you are willing to try anything but are unwilling to give up running! I now can’t even walk 5 houses up the street to my fathers place. Power walking cycling swimming and many other things are also good. Might want to think about it. My pain level is terrible and I only wish I could now walk normally, let alone run.

  31. Check this website out…
    This guy is a runner with AS:)

    http://runningwithas.com/

    • Cat Frohloff said:

      Everyone is different. We all have varrying levels of pain, and tolerances. I am very happy for him however…

  32. Hi. Three nights ago, I gave myself my first stick-pen injection of Simponi, or “spumoni” I affectionately call it (to help my mindset about taking a powerful drug). I have been on MTX for 9 weekly treatments and have had no helpful effects. My SED rate has remained at 63. I went on a vegan diet mid-February in hopes I’d be among the few RA sufferers who would find remission via diet. But alas, no. I remain on that diet, plus fish and feel great, except for the devastation of this RA disease. I had sudden onset of the disease in October ’11, a day after spray painting in an under ventilated area. I had acupuncture treatments, which probably helped detox my body but did nothing for the RA. I’m now seeing an integrative physician who has me on some Chinese herbs, copper, zinc, and dandelion (for my liver.) He is also doing some cranial work on me. I don’t know what is helping, but within 36 hours of my first simponi shot, which by the way came with no pain or side effects, I began to feel way better. I could walk without pain, and today held my grandbaby with no pain. Amazing. I’m not 100%, but so much better. I’ll see how long it lasts. Hoping more than the 2-3 weeks others report. This is sure a wicked disease. Thanks for providing a place to share experiences.

  33. I am on Simponi for about 8 months now. Previously was on Humira but kept skipping it as the pain in giving it to myself was so great. But great news re Humira. Zero pain in giving it. Almost immediate relief and so far lasts a good part of the month.

    • That’s fantastic and encouraging Laurina! I’m glad Simponi is working well for you and is painless. I too found it to be painless….almost wondering if I got it in, but then with slight (painless) swelling in my thigh for a few hours until it absorbed, I knew I injected it correctly. Has it taken the RA into remission yet?

  34. shirley staubs said:

    I go today for my third injection of simponi, I am also on methotrexate once a week. it is doing wonders on my pain and swelling in hands and wrist, but I am still so fatigued, hopefully my injection today will start helping my energy level, but overall much better than before my injections two mo, ago Shirley

    • That’s great Shirley. I’m so happy for you that it’s working. Have you found it to progressively make you feel better re swelling/ pain, or the same relief as from your first shot?

      I’m a little less than 2 weeks away from getting my second shot, which I am looking forward to. After one week, the efficacy started slipping. At 2+ weeks post shot, I’m getting quite sore again (was hard to dry my hair this morning and my feet are sore in a minor way again.) My fatigue is still significant too. I’m curious to see it play out and am hoping it’s the ticket! Thanks for sharing!

  35. My son just started simponi after trying all the other med’s he is also taking 4 methotracts a week it was 7 but his liver count keeps going up so the dr droped it to 4 , he has psoratic arthritis his elbow joints are fused he can’t strighten his arms and he has it in his lower back , hands , ankles , and now his knee’s are starting to be a problem he is only 22 . Is their anyone else out their that has fused joints ?

  36. hi .
    i dont have any fused joints but i have had psoratic arthirtis since ive been 18 and now im 39 .ive been on just about everything but for the past seven years ive been on simponi .it is my experience ti be the best relief yet to the pain and swelling .
    but in the past while is has seemed to have lost its effectiveness not tottally though my arhtritis is fine but my psoriasis is slowly coming back.this happened a few years ago and then everything went back to normal .has anyone else had this happen .i think the injections are too far apart and should be every three weeks .

  37. Cat Frohloff said:

    What is the Black Triagle list? I am having very good results with Simponi. I have no noticable side affects and find it less painful to give than any others thus far. I am also on MTX once a week. Perhaps some other drug you were/are on did not work with the Simponi. Or maybe it is just that what works for one doesn’t always work for another. I hope you do find something that works for you.

  38. I have taken simponi for the 3 time it helps alot playing alot of golf I no if I stop playing the pain would probaly go away but I love to play. I will update you thank alot for this web site

  39. I have had two shots of Simponi. I will be due for my 3rd shot in a couple of weeks. I have had no negative side effects so far. No injection site reactions and so far it has been completely painless to inject. This is the first biologic I have tried. The benefits (huge pain reduction and energy boost) hit me within in 24 hours, but do not last past 2 weeks. By the end of the third week I am starting to backslide a lot. Labs taken 1 week after Simponi is injected drop my ESR into normal range. Labs taken the day before Simponi is due are up into the 40-50 ESR range. I am on .5 MTX injected twice / week (total of 1mL/week). I also rely on Celebrex 400mg/day.

  40. Hello! I was wondering if anyone has had success with SImponi without being on Methotrexate? my husband and I were trying to get pregnant and I know you cant be on Methotrexate when you are trying. I have RA and was on Humira (did nothing to help me), was on Enbrel (had allergic reaction like poison on my legs), went to Simponi with 8 methotrexate a week, and worked great. I stopped taking MTX and I am having flare ups bad. Only way I can get thru the pain is by taking predisone, but I do NOT want to take predisone (gained 60 lbs on it). My RA doctor said about switching to SImponi injections every three weeks instead of monthly along with cymbolta along with hydroxychlorequin. Any thoughts?

  41. Sally Wilson said:

    Finally diagnosed with PsA 2 years ago after 3 years of being told I only had osteoarthritis. Had 8 months on Enbrel, which gave me a life back and had no real horrible side effects. That stopped working, so about to start Simponi. Starting a new drug regime is always a bit worrying, but any medication has side effects, even the humble aspirin! My problem is coming to terms with having a chronic illness which allows me to walk 6 miles along the coast one dY, and hardly manage to do the dusting another.

  42. dont worry about it .simponi is a good drug i have been on it for seven years and i am still doing well i am 39 and i have had psa since ive been about 17 simponi is the best thing ive ever takin…….

    • thank you for replying to my concerns. I have had the necessary pre-tests and hope to start on simponi next week.

    • Sally Wilson said:

      Good to hear positives about simponi; had my first “shot” on Tuesday, with no adverse reactions so far. My large joints feel a bit better already!

  43. My dermatologist is putting me on simoni for psoriasis I do not have RA. He said it helps some people whith psoriasis Is anyone taking it for that? I had a very bad reaction on stelara and humira did nothing. Can’t take the injection until January so I can get the stelara out of my system. After reading the blog I am worried about taking it!

    • Cat Frohloff said:

      Hi. I have been on Simponi since April with good results and no side affects that I am aware of. I also take MTX .06 once a week. I wave been on Enbrel and it mostly worked but I hated the injection. Humira didn’t work that well for me and seemed to lower my immune system…got a lot of little infections and colds that wouldn’t go away. I don’t find the injection for Simponi hurts and it is the quickest with the auto-injector pen. Hope this helps…good luck.

  44. Hi All
    I was diagnosed Feb.2010 with RA. Immediately was put on MTX, I was feeling so much better but alas I could not take MTX because my organs were becoming inflamed. So off the MTX put on Sulfasalazine felt not too bad not as good as MTX.
    I asked my RA doctor when I would feel as good as MTX .He added Enbrel felt worse. He took me off of Enbrel. He actually wanted to put me on Simponi right away however the drug company wanted me to try the enbrel first. So now I am on Sulfasalazine and Simponi. I take 6 Sulfasalazine a day and a shot every 4 weeks.
    I agree that the Simponi wears off be for the next shot. Now that I take it 4 weeks instead of once a month I feel much better. I don’t have to use too many otc drugs in between.

  45. Simponi started week ago I fill so much better I am not counting the hours I have to take next pain pill I go all day and think I did not have to take one all day

  46. I have been on Simponi for undifferentiated spondylitis since July 2012.
    I would say my symptoms and pain have improved without any real side effects.
    That said, I was very sick a week ago and my husband took me to ER – fever, sore throat (worst ever), headache, earache, fatigue, etc…
    Ran some tests…I had pharyngitis, strep throat and MONO @ the age of 37!
    I was wrong to assume my bout of MONO my freshman year in college (nearly 20 years ago) had “immune” me from a return…wrong. MONO lays dormant forever once you had it and can come back.
    So, I know TNF’s can lower your immune systems….
    Anyone else experience the same? Similar?
    Rheum said no shot for me this month…bummer, but I am actually debating if I should continue this therapy. Any thoughts?

    • carlascorner said:

      Jen: This is a very personal decision for every RA patient on drugs and one that I have wrestled with myself. I have made the decision to stay on biologics, even with the reduced immune system issues. You can fix strep throat, but joint damage is forever. You learn to be more vigilant (especially during cold and flu season) with hand sanitizers and avoiding people who are sick, and being extra aggressive in treating issues when they first come up. Good luck.

  47. hi Jen.
    i have been on simponi for seven years now for psa i was sick alot at the beginning too even had to get my tonsils out at 35 years old (wasnt fun at all) but i guess your body gets used to the drug and everything seems to go back to normal whatever that is hahahahaha.
    stick with it and make sure you have your checkups and bloodwork done and you will be fine.
    Peter.

  48. I have AS.I was on Humira for a couple of years until it became ineffective. I started on Simponi about a year ago. At first it seemed to help only moderately and the effects lasted only for about two weeks. Now I take injections every three-weeks and suddenly for the last two months my pain and flair-ups have significantly decreased. It will be interesting to see if it lasts. I had a problem with once-a-month sinus infections and was almost forced to stop the injections until I started flushing my sinuses with non-iodised salt, sodium bicarbonate and xylitol mixed in equal parts by weight. I add 1 teaspoon (about 5ml) to eight ounces of water and use it at least once per day. The mixture with out the xylitol was not effective.I haven’t had a sinus infection since. Hope this helps someone.

    Pat

    • Did you doctor allow you to take the Simponi injection every 3 weeks or did you do this on your own? I had problems with the simponi wearing off after 3 weeks but my rheumatologist wouldn’t allow me to use simponi every 3 weeks. Just curious since I will be seeing her for a follow up I thought I wouldn’t try again to see if I could inject every 3 weeks.

  49. I just took my first injection of Simponi tonight for RA and lupus. I was taking Humira but it stopped working, I knew from the first enbrel shot something was very wrong but took 8 more weeks before the dr. wanted to see me. Every time I injected my leg it swelled and was painful for 3 days. I was having allergic reactions and side effects and permanently damaged my eyesight. I hope that the simponi works. I am so scared of having worse side effects.

    • I took my first simponi a month ago. Since then I have had a chest infection, headaches and sore back. I was on humuira for 2 years but that also had its side effects – namely urinary tract infections regularly and no pain relief. I have psoriatic arthritis and my nails are affected by it mostly. Hope all works out for you

  50. I have had SA for about 20 yrs now, and was on Methotrexate and Hydroxyquine but for the last little while, pain and swelling were progressing to my feet, so I started simponi on March 7th /2013 so far i seem to find a little pain relief, but can’t wait to see how it’ll be with the next injections. I have not had any side effects which is awesome !I wish the best to all !!

  51. My husband and I are going to try to concieve in June. My doctor has put me in Simponi saying that the only clinical trails preformed was on monkeys. I have never gotten on a handle on my RA and being without meds causes my symptoms to return with a vegence. I want a healthy baby. Has anyone been on Simponi and had a healthy child?

  52. I have been on Enbrel for the past 5 months and had no relief from SA. I have fused joints in my hands and swelling in most of my joints. The injection sites are swollen and painful for up to three days after. My Dr is switching me to Simponi, has anyone else had relief in their hands from Simponi and any injection site reactions? I also have severe fatigue from Enbrel and suffered upper respritory infection. Any of this with Simponi?

    • carlascorner said:

      Lynn: I had some site reactions early on with Simponi, but worked through them. Simponi worked the best of all the biologics I was on. However, for me, it just didn’t last the entire month. If you continue to have fatigue, I’d ask your doctor about adding some folic acid. It has certainly helped me. Good luck and please keep us posted on your progress.

  53. I was on Simponi for 5 yrs. with good relief until 6 mos. ago when I started having alot of fatigue and hand pains. My doctor has tried me on Enbrel and Humira with no relief of my symptoms. (I have RA). I am now waiting to try Cimzia. I hope this works cause I’m tired of all the chronic fatigue and hand pains. Also tired of taking all the pain meds that just add to my fatigue. However I did have a great 5 years of relief on Simponi with no side affects whatsoever. I hope you have the same good response to it that I did. Good luck.

  54. I have had PSA for about 9 years now and had great results with only MTX until about 4 months ago when it stopped working. My Dr switched me to Simponi and it does not seem to have worked that well. I wasn’t aware of that until I ran out of Celebrex this past Sunday and the inflammation that had not gone down in my fingers flared up. My third injection of Simponi was only last week so it does not seem to be working. Called my doc today and he said to give it another month and he might add MTX again with Simponi. I have been an athlete all my life and hate to keep adding chemicals to my body and also find that exercise is the best thing you can do for your body, especially if you have arthritis. Also stretching helps keep you flexible. Too many people it seems do nothing which is the worst thing you can do, at least for me. I currently do marathon canoe racing and cross country ski marathons in the winter and cross train with cycling which are all non impact, great exercises. Get out and get active.

    Good luck to everyone, you will all be in my prayers.

    • This is Jeff and have an update to my post, After 5 months on Simponi I gave up. The only thing it did was clear up my scalp but did not help at all with the inflammation in multiple joints in my hand. We are trying the max dosage on methrotraxte again (1cc) but I dont think it is working. My doctor already suggested Humira as a next step so we will see what happens. Best of luck to everyone.

  55. Grace Anabelle said:

    A couple years ago I began developing iritis quite frequently, in both eyes. Since I had no obvious marker for it I was referred to a rheumatologist.
    I was diagnosed ANA positive and with AS. That explained a lot.
    Several tablet meds were tried-all made me sick and abused my GI tract from top to bottom. I couldn’t work or function. I was changed to an injectable-Simponi.
    I started on the auto injector. Only 30 mins max out of the fridge. It bruised me and I never seemed to get all the medication.
    After several months I changed to the premeasured Simponi syringe.
    When I was having worse physical symptoms the injection only lasted almost, 3 weeks, initially. But I also wasn’t certain I was getting the whole dose.
    After a few months it got better but still only lasted 3/3½ weeks.
    By a year later I could begin to lose some weight, get around better, no bruising from the injector, no iritis, no negative side effects and it was lasting the whole month it seemed.
    I recently skipped a couple months for other unrelated surgery and some complications in healing; just started back on Simponi today. Incidentally, this evening when I set the box out (unopened) I forgot about it for about a hour ( longest time yet) but I administered the shot anyway.
    It was the smoothest injection ever! Didn’t even feel it.
    I have a couple more injections in the fridge but lost my 18 year job last summer-along with my benefits.
    The Simponi assistance program I was in (which is the only reason I could afford the medication) says I no longer qualify for assistance so there goes my meds.
    They never filed it on my insurance, ever, (which is good because the co-pay was not even affordable for me), but apparently just having medical insurance is one of the criteria to be met to qualify for the program. If I ever get a job and income again, I’ll get back in the program, hopefully.
    My rheumatologist and his pharmacy definitely has a great ‘hook-up’ for the medication. I can’t complain about anything regarding the medication/administration/Simponi’s assistance program. Even though I can’t get it anymore I am grateful to have gotten it for $5-10 a month for over 2 years.
    Thanks to all that helped.
    Happy holidays!
    Grace

    • Grace Anabelle said:

      P.S.
      Fatigue is ever present. Unfortunately. However after a bunch of months on the Simponi my desire to get up, got noticeably better.
      Hope this helps…
      Grace

    • Grace Anabelle said:

      Oh!
      I also take Meloxicam daily. I think that’s been a huge help as well.
      Grace

  56. Cat Braunwell said:

    I would try ENBREL before Humira if I were you…works well. Only down side is that it is once a week and the injections hurt more than Simponi…Good Luck
    Cat B

  57. I’m 27, diagnosed only in October, 2013 with AS. I’ve been symptomatic since I was in high school, but no doctor could ever figure out what it was. I’m really active, but over the past few years, I’ve become more limited. MRI shows that L5-L3 are fused, so now it’s about stopping the progression. I’ve been approved for Simponi, and will start soon – I tested positive for latent TB, so I have to get rid of that first. Hopefully on Simponi starting in March, 2014. Haven’t tried any other meds before other than ibuprofen or naproxen. Hoping for some positive changes ’round here and getting back to a normal life.

    • …false positive – no TB and am set to start Simponi next week!

      • First injection last week – haven’t felt an ounce of pain in my back since – and I’ve dropped all other meds, too. No more NSAIDs! Just once/month at-home injection and I’m back to feeling like I’m 17!

  58. I have been on the Simponi that is given by infusion. I am on my 3rd dose. I have a mixture of MCTD Lupus and RA. My doctor gave it to me to treat the RA as of now I have only seen minor improvements. I have gotten headaches a day after infusion and sometimes feel fatigue. I also go a steroid shot. I also started to improve my diet and eat healthier foods. I noticed that even though I take medicine it is important to eat natural foods fruits, vegetables, juicing, and foods that are natural anti inflammatory.

  59. Sorry to hear this is not working for you. It didnt work for me either and i just started Enbrel this past Wednesday and already have seen signifincant improvements. The downside is you have to give yourself a pretty painfull shot once a week (at least the first one was somewhat painful) but it hard to believe it is already working. Good luck in finding the right treatment.

  60. Deborah Ethington said:

    I only recently had my first simponi injection. The next day I felt as if I was Simptom free. Now I am having severe leg pain. Has anyone else experienced this?
    Thanks, Debbie

  61. Cat Braunwell said:

    I am on Simponi and it works fairly well. I love that it is once a month. I also take mtx weekly. Enbrel works well but is the most painful injection of all the ones I have been on so far. For me Humira didn’t really work well and seemed to compromise my immune system the most.
    Good Luck
    Cat

  62. Deborah Ethington said:

    I have been on enbrel and humira, neither one worked for me. I also can’t take mtx. The simponi worked for about a week and I thought it was a miracle drug. But the pain in my legs is so severe I don’t know if I can keep taking it.

  63. Shelley said:

    I waited ages to qualify to have Enbrel injections, unfortunately it caused severe allergic reaction at each injection site. I have since started Simponi and have had 2 injections. I feel like it is helping somewhat, but I am also experiencing pain in my shoulder, elbow, hip and back and don’t know if it’s caused by the Simponi. I have gained heaps of weight because I have been on Prednisone for about 12 months and have halved the dose since starting Simponi. Does anyone know if the Simponi can be causing the pain, and also what are withdrawal effects of Prednisone and how long does it take to start losing weight once you stop the steroids.
    I have fibromyalgia and arthritis. Thanks for any information…

    • carlascorner said:

      Shelley: Thanks for your comment/question. I would be more inclined to say your pain is caused by your fibromyalgia and/or arthritis and less inclined to think it was caused by the Simponi. If you’re also withdrawing from Prednisone, the pains could be withdrawal symptons. I’m not sure what dosage you started on, but you usually withdraw in 5 mg intervals — so you would go from, for example, 20 mg to 15 mg until you stabilized, then to 10 mg and so on, particularly since you’ve been on prednisone for a while. Good luck with the Simponi.

  64. I’ve had AS for 24 years or so, from 17 till now (41). I toughed it out for the first 8-9 years and finally got on the medication train. Accupuncture, orthotics, many anti-inflammatory and pain medication. I’ve also tried sinponi and strict diet. The only thing that kinda works, and I do mean barely are regular massage therapy (as much pressure as possible without causing fractures) anti-inflams with lots of food (salads don’t count) and as many pain killers and/or high grade pot you can handle before overdoing it and turning into a tired ass zombie. I should probably mention I’ve had a full hip replacement and all the vertebrae in my neck have fused on me so now I’m permanently looking at my feet. Keep up the fight and get as much physical activity as you can handle cause odds are things are going to get worse before better.

  65. I was diagnosed with RA in 2006. I was on Enbrel from 2006 until 2009 which worked well for me until the injection site reactions became more than I could bear. I was then placed on Humira which also worked well for me until quite recently. It is July 2014 and I’m hoping to switch to Simponi. The TNF blockers have worked well for me over the years and I’m hoping I have a similar response to Simponi. I will let folks know after speaking to my Rheum. today.

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