Actemra

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So after all the doctor visits, lab tests, phone calls, insurance approvals and associated confusion, I received my first shipment of Actemra — the latest biologic in my quest to find something that works. It’s an Interleukin-6 inhibitor and while I’ve read the literature on how this drug works, the main thing is that it’s a different kind of drug than I’ve taken before. I’ve worked my way through all the other drugs except Actemra and Rituxan and since I’ve “failed” on everything else, the hope is that a different kind of drug will bring some hope. The issue is that I seem to build up an immunity to the drugs — they’ll work for a while, then eventually my body figures them out and builds up a resistance to them, just like it will build up a resistance to any other biologic agent like germs and viruses.

I was most recently on Kineret, which is a daily injection, so the opportunity to switch to a bi-weekly injection was a welcomed relief. Additionally, Kineret has a citric-acid based preservative in it and taking it felt a whole lot like pouring lemon juice into a paper cut. Every. Single. Day. (Did not make me look forward to taking the drug.)

So I took the first injection last Wednesday evening and was pleasantly surprised that other than the first little poke of the needle, I didn’t feel the injection at all. So far so good.

It wasn’t until sometime Thursday afternoon that I realized that I felt better than I had in months. I had been otherwise distracted on Thursday. I had to get up at 5:00 am in order to get my husband to the hospital for an out-patient procedure. The procedure was supposed to take about 30 minutes but he wound up being in surgery for more than five hours. So while I was sitting in the surgical waiting area I realized that I wasn’t as sore and stiff as I had been for a long time, even after spending hours in a somewhat uncomfortable sitting area.

Unfortunately that feeling of comfort and euphoria only lasted about 24 hours. By the time I was able to take my husband home on Friday, I was sore, swollen, and gimping around all over again.

But that brief reprise gives me some hope. It takes time for biologics to work and I am hopeful that if it worked for a short time on the first injection, it will work longer and longer each time.

I hope that your day brings relief and happiness as well. Thanks for checking in.

PS: My husband is doing great after his procedure.

RheumatoidArthritis.net TrialLink


There’s great news from RheumatoidArthritis.net. Please see the following announcement concerning TrialLink. To see the original announcement (with all the working links), visit RheumatoidArthritis.net here: http://rheumatoidarthritis.net/clinical/you-can-make-a-difference-with-rheumatoidarthritis-net-triallink/

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We are excited to let you know that there is a new opportunity for you to make a difference in rheumatoid arthritis (RA) research!

While most of us know that new medicines to treat RA are being examined in clinical trials, few of us actually have the tools to access those trials. We want you to have a place to share your voice and really make a difference in the future of RA treatment.

Starting this month, we will be offering the chance for RheumatoidArthritis.net community members to learn more about clinical trials performed by organizations researching new treatments for RA.

What sort of research is being conducted for people like me?

There are many ways to take part in research, one of which is to participate in a clinical trial.

      • Treatment efficacy & safety: This could mean taking part in a study for a new treatment that is in development, or even for an existing medication that is now being examined in RA.
      • Trial design and drug development: Researchers may also look for your feedback in the design of a clinical trial or the treatment itself (for instance – should it be an injection or a pill?). To learn more about participating in clinical trials, click on the link above and go to the RheumatoidArthritis.net website.)
      • Behavioral and impact studies: Other research focuses on gathering information about how people with RA manage their condition and how it impacts their daily lives. Results from our own RA in America survey demonstrate the far-reaching impact of RA.

Why does this matter?

No one understands what it is like to live with RA better than the RA community! Taking part in cutting edge research or providing input on how studies are conducted will have a direct impact on those living with RA.

How do I find out about new research opportunities?

When new research opportunities become available, we will share those with our community members via email and social media. Please note that registered members of the community will always receive the first notifications regarding opportunities.  You can register by going to the link above and becoming a member of the RheumatoidArthritis.net community.

Progress!

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After what seems like forever that I’ve been whining, I thought I would update the blog with some positive progress. One thing I’ve learned over the years is the truth in the statement, “This, too, shall pass” and many of the dispiriting things with which I’ve been dealing lately are, thankfully, on their way out.

  • The insurance hurdles on my new RA drug, Actemra, have been cleared and I received my first shipment from the specialty pharmacy today. There was a mix up in the dosage amount (they sent me enough for a weekly injection rather than one every other week), so the good news is I have twice medication as much for the same copay. I will provide some updates once I start taking it and it has some time to start working. And hopefully this will also mean that I can start tapering off the prednisone.
  • Physical therapy on my knee is almost over. My last appointment is tomorrow. I do think that it’s helped, which is a good thing. It’s also gotten me into the swimming pool for a workout either before or after my appointment which is even a better thing.
  • I had the diagnostic procedure for the GI issue and things are about as good as they can be. There wasn’t anything horrible found and the issues I was having don’t seem to be related to my RA or other inflammatory diseases which is all good. I’m on a two-week course of medication to calm things down. At some point in the future if I develop issues again, I may need to have some corrective work done, but for right now, things are improving.
  • The antibiotics seem to have cleared up the infected tooth I had.

We’re still facing some of my husband’s medical issues and work continues to be a bear, but there is a huge sense of relief each time one of these major things is resolved.

Thanks so much for listening to my whining and for all the great support I have received the last couple of weeks. There are many things for which I’m grateful and the virtual friends I’ve made through this blog are certainly at the top of the list.

I hope that whatever is on top of your list today brings a smile to your face. Thanks for checking in.

Just one thing at a time, please

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You would think that whoever is in charge of the universe would give people with a chronic illness a break and not complicate their lives with other major events. Instead it sometimes seems like the universe takes a certain delight in complicating the lives of those of us who already have their hands full just trying to make it through the day.

Such is the situation in which I find myself.

-Credit to Research Rockstars

-Credit to Research Rockstars

Because of elevated liver enzymes, I stopped taking my DMARD, leflunomide/Arava, in late March and the (count ‘em) eighth biologic I’ve tried failed, so I’m off of it as of the first of May. Basically the only thing standing between me and a major RA meltdown is 10 mg of prednisone a day – which has its own complications. I’ve been off the RA drugs now for six weeks and am waiting for the slow wheels of insurance precertification to grind its way to fruition to start one of only two biologics that I have yet to try. At least I saw my new drug, Actemra, listed on my specialty pharmacy website account so my rheumy’s nurse actually sent it in. No clue of when it might be approved and actually make its way to me.

In the meantime, I developed this icky gastrointestinal problem that sent me to the emergency room. A follow-up visit with my GI doctor has resulted in an upcoming outpatient procedure to correct the situation (if possible) or at least figure out what is going on. Interestingly, my GI doctor thinks that the issues may be connected to my RA because the start of the symptoms pretty much coincided with my going off of my RA drugs. I have a slightly different theory but the good news is I have doctors that take into consideration that I have RA and make that part of the overall mosaic of diagnosis and treatment that I receive.

In addition to these issues, working what has turned into a more-than-full-time job and running a household, I have physical therapy twice a week on my knee. The difficulties I’m having with my knee may or may not be related to RA and may or may not be improved with physical therapy. But I trust the doctor that ordered the physical therapy and I like my therapist and if there’s a chance it will help, I am happy to try. I was telling my physical therapist that I felt like I’ve got all the chainsaws, flaming torches, and sharpened swords juggled but if someone added so much as a ping-pong ball to the mix, it was all going to fall apart.

Sure enough, I got home that evening and discovered a badly infected tooth that led to an emergency visit to the dentist the next morning. The good news, I guess, is that I’m not currently on immunosuppressive RA drugs so my chances of getting this under control with some (painful) intervention from the dentist, a round of antibiotics and extra attention to oral hygiene for a week or two is pretty good.

When I step back, I know that all this, too, shall pass and I know unequivocally that, even with these bumps in the road, I have a wonderful life with many, many blessings. And I have heard it said that God doesn’t give us more than we can handle. There are just times that I wish He didn’t have quite so much faith in me.

I hope whatever is on your agenda these days are also blessings in your life. Thanks for checking in.

 

Aaargghh! (continued)


Maybe it’s just me or maybe it’s just me on prednisone, but it seems like my dealings with the medical profession are increasingly frustrating lately. This is unfortunate because I seem to be having a lot of medical interactions these days.

(The rest of this post is just going to be me venting, so if you want to skip it, please change the channel now. :-) )

I reported earlier that I had a GI situation for which I couldn’t get into see the gastroenterologist until the first week of July. Okay. That wasn’t what I wanted, but I was dealing with it. Until Sunday when said situation sent me to the emergency room.

After exams, blood work, consultations and discussions, the ER guy said I need a surgical procedure to correct the situation. He was going to consult with my GI guy and come back with a plan.

After speaking to my GI guy, the ER doc came back and said that I had basically two options. They could keep me in the hospital and they could move forward with the procedure, assigning whichever of my GI guy’s partners was available. Or, according to the ER guy, the GI guy said that he would somehow work me into his schedule in the next few days before he left town.

It’s not really a life-threatening situation and I don’t like hanging around hospitals, so I opted to go home and schedule the procedure with the doctor that I know.

So it’s now Monday. I spent a great deal of time today coordinating with GI guy’s staff (who took me at my word about what GI guy said to the ER guy about doing the procedure). I spent even more time getting things coordinated with the surgical center. My husband rearranged his schedule this week so he could be with me and that included rescheduling a rather critical medical procedure of his own. I reorganized meetings, moved things to conference calls, cancelled physical therapy appointments, and basically cleared the decks for the second half of the week so I could have the procedure and have recovery time.

Then GI doctor’s office calls me back. They said they finally talked to the doctor who saw that I had been scheduled for the procedure Wednesday morning. He said what he told the ER guy was that he would work me in to be seen IN THE OFFICE for an exam — not that he would schedule the procedure (for which the ER doc was going to admit me and do that day).

I understand him wanting to see me for himself before committing to a surgical procedure. But it may be another week before he can schedule me for the procedure (assuming that he deems it necessary). If I had stayed at the hospital, I could have already had it done and be home (and saved $200 emergency room copay, which they waive if they actually admit you).

I’m sure it was a simple miscommunication between what the GI guy said and the ER doctor heard, but it certainly has caused me (and my husband) an amazing amount of frustration today.

ARRRGHHH! (This is steam coming out of my ears …)

Sorry to keep venting lately, but I really appreciate you listening. Thanks for checking in.

Fast, Faster, Fasting

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I’m pretty good at managing one medical condition, but I have to admit that keeping up with multiple issues makes me crazy with all the appointments and medications and tests, oh my! This is especially true because lately I’ve been extra busy at work and honestly finding time for all of this stuff has been pretty stressful.

I am currently doing physical therapy twice a week for my left knee and that will go through the end of June.

Then I had the liver enzyme situation which kicked me off some of my meds, including one of my RA meds. On top of this, when I saw my rheumatologist, she agreed that we need to switch to Actemra, but she indicated that since I had just gotten my labs done right before I saw her, that I wouldn’t have to do any more blood work. But she did say she wanted to get a baseline liver sonogram before starting the Actemra because of the liver situation.

I saw my rheumatologist on a Wednesday. When my rheumatologist’s nurse called me the following Monday, I just assumed it was to let me know that the insurance hurdles had been cleared in record time. Instead it was to tell me that apparently the doctor had changed her mind and decided I did need to do a full range of blood work. They wouldn’t even submit Actemra for pre-approval until the lab results came back, which basically delayed getting started on the new drug for yet another week. (I haven’t been on anything but 10 mg of prednisone for more than a month now.)

I also had the follow-up with my PCP after the ER visit for chest pains. He suspected that it might be GI/esophageal related and ordered an upper GI.

The blood work had to be fasting. The liver sonogram had to be fasting, but I could have water. The upper GI not only had to be fasting, I couldn’t even have water for at least eight hours prior to the test. In addition to RA, I also have Sjogren’s and without my medication, I get dry as the Sahara anyway, but add to that the fact that I couldn’t have anything to drink, I was pretty miserable.

But I got everything done on Thursday as the imaging office was in the same medical complex as the lab. I got there earlier enough to go get blood drawn first. Of course I was so dehydrated that they had to stick me three times and use a pediatric butterfly before they finally were able to draw the samples they needed. Then it was off to have my liver sonogram done (which was no big deal, just messy from the gel they use) and the upper GI.

The upper GI was at least interesting because I could watch what was going on and the radiologist told me what was he was observing and gave me the results verbally when we were done.

So by Friday, I had all the results:

  • My labs came back pretty normal — at least to the point that my rheumatologist was willing to prescribe Actemra. One of my liver enzymes was still slightly elevated, but so greatly improved that we were able to move forward. However, I was somewhat aghast when I found out that the nurse (who I already was convinced is pretty incompetent) had never heard of the drug and was asking me what dosage she should order.
  • The liver sonogram result was “fatty liver.” This is not great, but it’s not terrible either. It just underscores that I need to take a more serious approach to my diet and exercise.
  • The upper GI came back completely normal with the exception of a tiny bit of reflux. The radiologist said I didn’t score 100% but I got an A-. There were no ulcers, hiatal hernias, obstructions, or cancer. This is all great news but now we still don’t know what caused the chest pains that sent me to the ER. I see another follow-up with my PCP in my future.

On top of this I seem to have developed an issue where I need to see my gastroenterologist but I can’t get an appointment for another month and I’m having war with my insurance company over a $70 charge for mail-order drugs that they show unpaid but my credit card shows that it clearly was.

AND my husband is having a medical procedure of his own this week which requires a day trip to the hospital and rest for a day or two afterward, so in addition to my own issues, I am helping support my husband’s situation.

I don’t know. It seems like my entire life is wrapped up in dealing with medical issues these day. I know that all this will be resolved in the near future, but at the moment it’s a bit difficult to manage it all and still keep a job and a household intact.

I hope whatever you’re juggling these days are happy things and not flaming chainsaws. Thanks for checking in.

 

 

Exciting News!

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As you may know, I’m pleased to be associated with Creaky Joints and their Joint Decisions initiatives that provide so much valuable information and resources for people with RA and similar chronic and inflammatory joint diseases (see www.JointDecisions.com).

On Wednesday, June 3, Megan Park (well-known for her role in “The Secret Life of the American Teenager”) disclosed that she lives with RA and has partnered with Joint Decisions to help raise awareness of RA and further Joint Decisions’ goals to empower and educate those with the disease. She will be featured on Joint Decisions’ first web chat of the new season, “Unlocking Energy: Understanding the Important Role of Movement and Nutrition in Managing your RA” on June 15. (The full schedule and a registration link appears below.)

Joint Decisions has a crack website team that created a “content capsule” that would have allowed me to include some really cool information from their site. What they didn’t count on was that, even with a tutorial, I apparently don’t have the technical ability to embed that content in my blog, so please visit www.JointDecisions.com to see all the exciting things they have going on and avail yourself of all the great resources and information there.

This season’s Joint Decisions web chat line up:

Thanks for checking in.

It’s not always RA

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I don’t know why but I’m always surprised when something is wrong with me that’s NOT associated with RA. I mean when my liver enzymes went crosswise, the first thing that happened is that my rheumatologist took me off one of my RA meds.

But we’re actually people first then people with RA second, so sometimes stuff happens that also  happens to “normal” people.

I was minding my own business, driving to work one morning last week when I started having chest pains. First it just felt like I had tried to swallow something and it got stuck halfway down (right behind where my heart is). Then the pain blossomed throughout my chest and up my neck under my jaw. It would lessen, then it would come back stronger.

I was driving east toward a major highway. When I hit the highway I had to make the decision of whether to turn north and go to the office or go south to the emergency room. I switched lanes about four times. The pain would come back and I’d move over to the lane to turn south. Then it would lessen and I’d think I was stupid and get back in the lane that would take me north. Finally I got to the intersection and had to make a decision. I decided that if my husband were having these symptoms I would tell him to go to the ER, so I took my own advice and turned south toward the hospital.

I called my husband who stayed on the phone with me as he headed toward the hospital to meet me. (We have those neat Bluetooth, hands-free phone things that let you talk on the phone without taking your hands off the wheel.) My husband suggested that I pull over and call 911, but I pointed out that by the time the ambulance could reach me that I could already be at the hospital. I did finally reach a point on the highway where I could pull off to the access road where I could pull into a parking lot if I felt like I couldn’t drive any more.

I got checked into the ER immediately and whisked back to a treatment room where a flurry of activity took place almost all at once: an IV started and blood drawn, hookups for an EKG and heart monitor, and a chest X-Ray. My blood pressure and heart rate were all over the map. The doctor came in and checked me, then the nurse came in with drugs. They administered morphine as a vasodilator which reduced my blood pressure, Zofram for nausea, then, as a precautionary measure, nitroglycerine and an aspirin.

Four hours later they finally released me. Everything came back perfectly normal.

I know, that’s good news, right? But it’s hard to go through all of that and be “normal”.

So I had a follow-up appointment with my PCP yesterday. He suspects a specific type of esophagus spasm. One of the common causes/triggers of this is a hiatal hernia, so I get to go in next week for an upper GI. (Can you say barium milkshake?) I was already scheduled for a liver ultrasound because my liver enzymes (while better) are still not where they should be and my rheumy wants to get a baseline before we start Actemra. At least I was able to schedule the two appointments back-to-back so I only have to go to the imaging center one time (and only fast once!).

So it wasn’t RA and (thankfully) it wasn’t a heart attack. But honestly, I really don’t want any new health issues in my life at the moment. Sigh. Fingers crossed that the liver test comes back good and that they find something really, really simple with the upper GI.

I hope that whatever excitement you have in your life today doesn’t involve the emergency room. Thanks for checking in.

Next up, Actemra

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Well, I’m sort of still on a drug strike. Temporarily.

I had my follow-up with my rheumatologist yesterday and we revisited my treatment plan. She actually wasn’t cross with me for staying off Kineret once I returned home from Europe and got over the crud.

As noted before, I’ve been through all the biologics except for Rituxan and Actemra and, after some discussion, she is prescribing Actemra. This is an Interleukin-6 inhibitor which I haven’t tried before so I am hopeful that this may be the “magic” solution that will not only be effective, it might actually last. Additionally, the drug is administered either via injection or infusion and she allowed me to choose my preference of an injection rather than infusion. Kineret is a daily injection, so it will be nice to go back to a once-a-week schedule rather than having to do daily pokes. (Four injections a month vs. 30 injections. I mean really, how great is that?)

Of course, now I have to struggle through all the insurance pre-approval circus (yet again), so who knows when I might actually start on the drug. The fact that I’m still on 10 mg of prednisone so am not feeling horrible makes me a bit more patient about it.

Hopefully everything will be approved quickly and the self-imposed drug strike will end on a happy note.

I hope whatever is new in your life today brings a smile with it. Thanks for checking in.

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