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Most health issues are like short skirmishes. Skinned knees, a 48-hour bug, a cold that lasts for a week, the flu that lasts for two weeks, gall bladder issues that are solved through surgery and recovery. Some skirmishes you win on your own. Others take WMDs (weapons of medical destruction) and armies of healthcare providers.

Chronic illnesses are not like that. They are long-lasting sieges. They are the 100-years War where you barricade yourself against the assault of the disease throwing out your best defenses, beating back the enemy as much as possible. With RA, you hope for an armistice or a truce SiegeTower_6_30_06when remission occurs, hopefully indefinitely. But still, the damage to your battlements is there.

And because there is no final victory over RA (yet), it is important to celebrate the battles that you do win.

So this is me doing a celebratory dance.

I’ve mentioned a couple of times that Xeljanz seems to be working and, to me, that’s more than a victory, it’s a miracle. I’ve been on numerous drugs but, until now, the first thing I did in the morning when I woke up was try to decide what hurt most. Now I wake up and mentally try to organize everything I have to do in the day. Stiffness and pain are not first or foremost in my mind.

Xeljanz is not a cure and it’s early in the treatment plan. There are a lot of things that could go sidewise. But I’m not there yet. Now I get to wake up and do a happy dance and blow raspberries at RA.

I hope whatever your day brings, there’s a reason to celebrate a victory. Thanks for checking in.



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I’ll start with the most recent news first.

Yesterday I went to the oral surgeon for the first step in getting the replacement implant for the tooth I’d broken and subsequently had removed last January. The jaw has to have time to rebuild the bone where the root of the tooth was before they can start the implant procedure. The first step is putting a post into the jaw to hold the crown that will eventually be in place. alftoothacheThis is what I had done yesterday and it takes several months for the bone to heal firmly around the post before the next steps of putting an abutment (the part that extends beyond the gum line that the crown holds onto) and the crown. Since the location of my missing tooth is directly below a sinus, the oral surgeon inserted a bit of additional bone below the sinus and above the implant for extra protection. I opted for general anesthesia rather than local for several reasons and, other than the anticipated multiple pokes (5), to get the IV started, all went well. When I woke up, they had wrapped a band around my head that held an ice pack to help with any swelling. I was reminded of Alfalfa from the old “Our Gang” show. I am doing really well. I’ve had no pain and spent most of yesterday sleeping off the anesthesia. Just as a matter of practice, after any kind of surgery, I always take the pain medication “on schedule” the first day, although I didn’t really feel like I needed it. Today, I’ll definitely switch to the “as needed” approach. I go back in a week for another X-Ray and follow-up visit, then in three to four months we’ll take the second step of inserting the abutment into the post. A couple of weeks after that, I’ll get the final crown and it will be as though the tooth was never gone.

Before that, I visited my orthopedic surgeon for a follow up on my knee replacement. While on vacation, my knee started making a definite “clunking” noise. As this was new and it has been 10 months since the surgery (close enough to my one-year evaluation to count), I decided to get it checked out. Everything looks, as my doctor says, “perfect”. As the knee continues to heal, which can take 18 months to two years, the muscles continue to relax and swelling recedes. This makes the area around the new knee a bit looser and, as such, the components move more freely and can make noise, particularly when the knee is in a twisting or turning motion. He also checked my hip replacement which also looks great so I’m good to go for another two years on both of those. The only fly in the ointment (not actually as big as a fly, more like a gnat or a noseeum) is that my other hip is showing some degeneration and narrowing of the cartilage and more arthritis. Not headed for a replacement there quite yet, but it is changing.

The really good news is that I had my rheumatologist follow up and the Xeljanz seems to be working. My labs look good and most days I actually feel pretty good. I’m currently still on 7.5 mg of Mobic and 20 mg of Arava (leflunomide). I’m dropping off the Mobic starting next week. I was on 15 mg per day, but as Xeljanz can have pretty severe gastric consequences, I cut it in half and, with my rheumy’s blessing, am going to drop it off altogether. I was on it mainly to help with the transition to the new drug. In addition, I’m going to move from 20 mg of Arava to 10 mg with the goal of dropping off it altogether by next spring. My one fear is that I’ll build up a resistance to Xeljanz like I did the TNF inhibitors. But so far, so good. One step at a time.

Finally, there is the unknown. The same day I saw my rheumatologist, my PCP ordered a Doppler scan of my carotid arteries. I have cholesterol and blood pressure problems and as I generally eat the same diet as my husband who has triple-bypass and have the additional risk factor of inflammation from RA. It’s probably a good idea to check for plaque build up. The Doppler scan is very similar to a sonogram where they put a gel on your skin and move a wand/device over it. I really wasn’t expecting anything, but I have to say that now I’m a bit concerned. The technician said that I would probably hear from my doctor in a few days, but that he would tell me if everything was okay (which he shouldn’t have said). At the end of the test, he DIDN’T tell me everything was okay, just that my doctor would get back to me. I haven’t heard anything yet. I’ve been trying to be patient because of the recent Memorial Day holiday and then being out for oral surgery, but I am going to start calling next week if I don’t get some information soon.

So that’s my life lately. Lots of stuff going on but RA has generally been quiet due to (fingers crossed) the new drug routine. I hope whatever is going on in your life brings you a smile. Thanks for checking in.


“RALLY” ’round; thank you Healthline


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I must have checked a box somewhere, sometime otherwise I wouldn’t have gotten the letter. You know those letters that start out “You previously contacted us and requested information …” This one is from Bristol-Myers Squibb (BMS) and even though I usually toss this kind of letter directly into File 13 (aka, the wastebasket), this one has piqued my curiosity.

BMS is introducing a data collection research projected called RALLY. It’s a long-term study evaluating the impact of RA on the quality of life and treatment experiences of people with RA and rheumatic conditions. There’s not much effort. About twice a year fill out a questionnaire that takes 30 to 60 minutes. Their recruitment goal is 20,000 participants.

On one hand, this is the kind of thing that I support because I believe that knowledge is power and the more we understand about RA, the closer we come to finding better treatments and, eventually, a cure. On the other hand, there is a certain qualm about providing so much information that goes into a database. (This comment from me — the woman who has given her fingerprints and retinal scans to the NSA to get through airport security and immigration more quickly …. ) I haven’t looked at the questionnaire yet but, among other things, the letter says they might contact my doctor to verify my diagnosis. I get it, they want valid information.

If you would like to learn more and/or participate there are two websites. For frequently asked questions, go to If you want to participate, you can either call 1-800-323-5871 or visit the RALLY website at and click on “NDB & RAlly Participant’s Entry.”285x285_Best_RA_Blogs_2014_1_0

In other news, I’m proud (and somewhat humbled — again) to have been notified that Carla’s Corner has been named one of Healthline’s best Rheumatoid Arthritis blogs. Many of my favorite bloggers have also made the list. Check them out at If you aren’t already familiar with the terrific people who write these blogs and share their stories, I think you’ll find it well worth your time and effort. There are some extraordinarily inspiring and educational posts out there.

This week is filled with doctor’s visits. I should have lots to report by the end of the week (hopefully all good!). Thanks for checking in.



Have pharmacy, will travel


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It seems forever since I posted. My husband and I just back from an almost-three-week adventure and the couple of weeks prior to that were very busy with work and getting ready for the trip (more about that below).

Happy Pills store in Barcelona

Happy Pills store in Barcelona (sells candy “pills”)

One of the “joys” of having a chronic illness is making plans around your medication schedule. As we were going to be gone for such an extended time, I had to make sure that both my husband and I had enough of our prescriptions to last us (per the Hobbits) there and back again. Part of the issue was that both of us had just started new medications so it was going to be too early for a refill but we’d run out during the trip. I’d managed far enough ahead on our other medications that I got refills right before we left, so we had a full supply to see us through on those.

With prescription medications (especially specialty medications such as Xeljanz) there are limited options for addressing this. With my husband’s new medication, I could have gone to our local pharmacy and had some extra pills “loaned” to us against his next refill. I’m not sure if all pharmacies do this, but our local pharmacy will make some accommodations in special circumstances like these or if, for example, a physician refill authorization is late in coming. Since the Xeljanz comes from my specialty pharmacy, this was not an option.

As noted in earlier posts, I got both a two-week sample from the manufacturer and my doctor’s office provided a sample bottle as well, which was enough to solve my problem. For my husband, I took a cue from my Xeljanz experience and called doctor’s office. They had originally provided a small sample bottle of the new medication, so I asked if they could provide us a couple more to see us through the vacation, which they did.

I have to say that switching to Xeljanz when I did was very opportune. Otherwise I would have to figure out how to manage my pre-filled Orencia injections through multiple security screenings and keeping them cold over the course of trip. I had already decided to take one injection early before we left on the trip then just be late for the next one scheduled for two weeks later. Fortunately I didn’t have to deal with that situation.

We take 18 prescription medications on a daily basis.

We take 18 prescription medications on a daily basis.

Together, my husband and I take 18 prescription medications on a daily basis (plus a plethora of vitamins and supplements). On top of those (which got placed into the daily pill minder boxes), there was another bag full of the “occasional” medications that I needed to take along, just in case. Those included such things as prednisone, prescription pain relievers and muscle relaxers. In addition to those prescriptions, there was yet another bag full of “travel” medications that our new doctor had prescribed including Cipro, Tamiflu, and something to address stomach viruses. We had most of a bag of just prescriptions.

But about the trip … It was terrific.

From Dallas we flew to Miami Beach where we spent the night. The next day we boarded the Norwegian Epic for an 11-day trans-Atlantic cruise from Miami to Barcelona, Spain with a stop on day eight at Madeira, a Portuguese island where the wine by the same name is made.

The cruise was wonderful with great food and lots of fun things to do (especially in the evening), but I remarked to my husband that it reminded me what living in a luxury retirement home must be like. As we were on the ship day after day after day, things got pretty routine and revolved around meal times. One of the highlights was a guest lecturer who does documentaries for PBS who spoke on the history of the railroads, Grand Central Terminal (which I love), and the Packard automobiles.

Alcove in the Catedral de Barcelona

Alcove in the Catedral de Barcelona

After the cruise we stayed a couple of days in Barcelona. We had visited once before a couple of years ago when we were on our last cruise, but this time we figured out the subway system which made getting around to all the sites a whole lot easier. Barcelona is an amazing city and one of the cleanest cities I’ve ever visited. Renown for its Gaudi architecture and Picasso museum, we spent a large part of a day visiting the beautiful Catedral de Barcelona.

From Barcelona we traveled to London. We used to spend Thanksgivings in London, but haven’t been to London since 2012, so we couldn’t miss the opportunity of being on that side of the Atlantic and visiting it again. Last time it seemed like the whole city was under construction for the Summer Olympics and the Queen’s Diamond Jubilee celebration, so it was nice to visit again to see the improvements since last time. I’m pleased that many of the subway stations are becoming “step free” making the city more accessible to those of with mobility issues. We visited some favorite haunts and restaurants, took in a showing of the latest Jeeves and Wooster play which is classic British humor, and stumbled into the premier showing of Godzilla in Leicester Square just as the stars made their appearance on the red carpet. In all, a good time.

The trip was capped off (thanks to airline points) with a first-class return on British Airways which is the closest I’ll ever get to being treated like royalty. As an American it was almost embarrassing to be treated to that much service. But it was my birthday so I enjoyed every minute of the 10-hour flight back to Dallas.

I am pleased to say that I did extremely well over the trip, even with all the tramping around cobblestone streets in Barcelona and London. I was sore and my joints were starting to be a bit swollen after Barcelona so I took a low-dose of prednisone while in London (three days of 10 mg, followed by three days of 5 mg) which seemed to calm things down. I can only conclude that the Xeljanz is working because the issues I had been having on Orencia are no longer there and I barely thought about RA the entire time I was on the trip. I have a follow-up visit to my rheumatologist next week, so we’ll see what she has to say. (My one concern is that I put on 13 pounds after starting the drug, the majority of which was before the trip, so I can’t blame cruise-line food.)

So, back home again. I apologize to those bloggers that I follow who posted some wonderful posts in my absence. There were connectivity issues on the ship and while traveling so while I got to enjoy the posts via emails for the ones I subscribe to, I wasn’t able to post a comment. Now to get caught up on work and laundry and all those other parts of my life that didn’t go “on hold” just because I was gone.

It’s great to be back. I hope whatever adventures you’ve had in your life have been good. Thanks for checking in.


More Xeljanz Adventures

So on my way over to the rheumatologist’s office to pick up my Xeljanz samples, my specialty pharmacy called me and said that my real prescription was ready to be picked up. I was expected a two-week supply from my doctor and was pleasantly surprised to find a full 30-day bottle. (This was on Friday.) So, after picking up the prescription, I have 60 days in stock plus the two-week sample from the company that arrived yesterday (Tuesday).

Then Friday afternoon I got a letter from my insurance company saying that my authorization had been denied because I hadn’t been through the step therapy program of Humira and Enbrel before going to Xeljanz — which I had but on a different insurance. I’m reasonably intelligent and I”ve dealt with insurance and doctors so  my head was telling me that pharmacies just don’t pass out expensive drugs unless they’ve cleared the insurance hurdles. But emotionally it felt like quite a blow because it seemed like I had already spent so much time trying to sort everything out.

So Monday rolls around and I’m trying to figure out who to call first — the pharmacy, the insurance company, or my doctor. Fortunately, Monday afternoon brought a second insurance letter stating that my doctor had already provided the information and that the drug, in fact had been approved.

But wait there’s more.

Tuesday, the people from Xelsource call me. Xelsource is Xeljanz’s patient support arm. They confirmed that everything had been approved, touched base on the co-pay card, and informed me that Pharmacy X would be mailing me my prescription. I thanked them, but I told them that I had already picked up my prescription from my regular specialty pharmacy, and they said, “Fine.”

Today the people at Pharmacy X called me. They needed to clarify something and were more than a bit surprised to learn that I had already picked up the Xeljanz from another pharmacy and, as such, my insurance surely wouldn’t approve a second prescription. I told them I didn’t know how duplicate prescriptions got sent/approved, but that I have an appointment with my rheumatologist in May and that I would ask about it.

So first I couldn’t get a supply of Xeljanz for love or money and now I have people falling all over themselves making sure I have more than enough.

I’ve only been on the drug for a few days so it’s too early to know if there are any positive effects. I had some stomach issues over the weekend which was a bit troubling since that’s one of the known side effects of Xeljanz. However, I’m also taking an NSAID and prednisone and about six other medications, most of which can cause stomach upset. So even with the Protonix I take, it’s not surprising that my tummy rebels a bit.

So that’s where we are. I have enough Xeljanz to see me through the trip and hopefully everything is established so there won’t be issues going forward getting the prescription filled.

I hope whatever adventures you have going on are wonderful. Thanks for checking in.

Xeljanz Update


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Some progress. (Fingers crossed.)

I spoke with my rheumatologist’s office last week and they had submitted all the paperwork to Xeljsource which is the patient support arm and (I believe) the direct pharmacy for Xeljanz distribution. So I called Xeljanz.  After I had gotten through the maze of the “push this button” maze, and spoke to a human, they were quite pleasant and helpful. Yes, they have the paperwork (finally). Yes, it’s in process. No, there’s no way to estimate how long the insurance approval will take. Yes, I’ve been approved for a (free) two-week sample of the drug which they will try to expedite.

There is a timing issue here. I will be out of town at the end of the month and if I don’t get the prescription filled soon, then it will expire while I’m traveling. Hopefully the two-week sample is in addition to the full month, which should be more than enough to see me through my travels.

Today my rheumatologist’s office called me. They have received some samples of the drug. I can go by their office and pick them up, so by tomorrow I should have my first dose of Xeljanz. About 10 minutes after the call from the rheumatologist, Xeljsource called me back to confirm that my two-week sample will be delivered on Tuesday. So between them and my doctor, I should have about a full month’s supply to get me started. (For free!)

Even though it’s a pill form, it’s every bit as expensive as the other biologics that weigh in (depending on your pharmacy and prescription) between $2000 and $3000 per month, so getting a free month is, indeed, a blessing.

In the meantime, I’m “gimping” along with my 20 mg of leflunomide, the 7.5 mg of meloxicam (NSAID), and temporarily, some prednisone. Hopefully the Xeljanz will kick in quickly with few side effects.

So that’s the update on the drug situation. Hope you’re doing well. Thanks for checking in.


What do you do when you can’t?


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From One Big Happy comic strip, March 25, 2014.

From One Big Happy comic strip, March 25, 2014.

We’ve all been there. The day you have something important — or even not-so-important — to do is the day you flare. Or the day you’re especially suffering from fatigue. Or the day the side effects of the meds really start kicking in. Or just the day you feel so overwhelmed with dealing with the disease that it’s hard to deal with anything else.

Sometimes we just get up and go anyway, with varying results depending on how well we can actually function. Other times we (once again) beg off with some excuse or other, then wind up feeling guilty on top of feeling bad.

But that’s mainly the physical effects of RA. What about the mental outlook?

I’ve been paid a major compliment. I’ve been asked to submit a guest blog. No details here to spoil the surprise, but I was very pleased. I mainly do this blog for myself but as a wonderful consequence I’ve made some great friends and occasionally something about which I’ve written has resonated with other people dealing with similar situations. The fact that someone else wants me to contribute toward their efforts on education about this disease is, indeed, flattering.

The topics they are suggesting are all positive. I get it. With all the negative, scary information out there, it is truly helpful to know that real people have overcome challenges and have victories (however large or small) over the disease. I was especially taken by Pollyanna Penguin’s “Life in the Day” post where she contrasted her life today with when she was first diagnosed. Her life is certainly not perfect, but through treatment and her own determination (and wicked sense of humor), she’s doing better.

My problem is that mentally, right now, I’m not in a good place to do something positive. As posted earlier, the Cimzia hasn’t been working. The Arava and Mobic are “supplemental” so they’re not supposed to carry the main load of combatting the disease, so for some time now I’ve been without mainline treatment and it’s catching up to me. It’s scary because I can sit here and tell myself that this is what my future is like — constant pain, chronic fatigue.

My doctor has switched me to Xeljanz but, due to a mix-up getting my recent cholesterol labs to my doctor, I haven’t yet started on the drug. Now that I’ve (hopefully) gotten the lab situation straightened out, we still have to go through the insurance approval process and then it will take a minimum of weeks and possibly months before the Xeljanz provides any improvement. In the meantime, I’m like the boy in the cartoon — it’s really hard to get excited about getting out of bed in the morning.

I intend to do the guest blog. In my case, it’s a mind-over-matter situation. (If you don’t mind, it doesn’t matter.) And I do have plenty of positive things to provide the fodder for the piece, I just need to remind myself of them.

Until then, I hope whatever gets you out of bed in the morning is a good thing.

Thanks for checking in.








The X-Factor


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Those of you who are young enough to remember high school algebra know that “X” stands for “unknown”. And that’s kind of where I am right now — in unknown territory (not high school algebra class … except in those dreams where I haven’t studied for the test).

But first I want to say a sincere, “thank you” to all the support and encouragement I received from my earlier “Discouraged” post. That really meant a lot.

As reported earlier, I didn’t feel that Cimzia was working and had moved up my appointment with my rheumatologist. That appointment was yesterday.

Honestly, yesterday I felt so bad it was hard to get out of bed to go to the appointment, but at the same time, it’s good to go to the doctor when you’re actually exhibiting symptoms. She examined my poor swollen joints and asked when my last Cimzia injection was — which was only four days previously. (Cimzia is scheduled every two weeks, so it should have been in full force.) So she agreed that it wasn’t working. That was the easy part.

Finding the alternative was the hard part. We discussed Rituxan (rituximab) which has been shown to be helpful to patients (like me) who either didn’t respond or quit responding to TNF inhibitors. (My list includes Humira, Simponi, Enbrel, and Cimzia not to mention Orencia which is T-cell inhibitor.) I have some hesitation about Rituxan (along with everything else I haven’t tried) and major reservations about any infusion therapy because of my lousy veins. I really appreciate the time that Andrew gave me to discuss his personal experience with the drug. I didn’t say “no” but my rheumatologist is perceptive enough to understand when I hesitate. So the discussion turned to Xeljanz.

Thus the second “X Factor” for Xeljanz.5_mg_bottle_r_lr

Like any powerful drug there are benefits and downsides to it which I discussed in excruciating detail with my rheumatologist. Interestingly, she participated in the early clinical trials of the drug so she had pretty in-depth knowledge about the drug. Right now she has about a dozen other patients on Xeljanz. All of them had issues with TNF inhibitors and she indicating all of them are doing well on the new drug.

So that’s where we are. Xeljanz can raise cholesterol so you must have that checked before you can start on the drug. Fortunately I had labs done recently showing good numbers there. We’re in the midst of sorting out the insurance approval and getting the prescription set up.

In the meantime, I’m on prednisone to help calm things down (10 mg for two weeks followed by 5 mg for two more weeks) and I can already tell it’s helping, after only two doses. (I wish it didn’t have such horrible side effects, I’d just stay on it …) I’m also on Protonix while on the prednisone to help protect my stomach, although I was supposed to have been on it for quite some time since I also take Mobic/meloxicam. In addition, I am continuing to take 20 mg of Arava every day.

I can’t say I’m completely happy (and won’t until I see what miracles Xeljanz might deliver), but I’ve at least come out of my discouraged funk. (This may just be a side effect of the prednisone which can make me slightly manic.) I now have a plan of attack which is more than I had. Any plan is better than no plan.

Again, thank you to everyone for their support and encouragement. I’ll keep you posted as things go forward.

I hope whatever factor comes into your life today makes you X-tatic. Thanks for checking in.

Snap, crackle, pop!


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I can’t remember a time when my joints didn’t pop. Even as a kid I’d sit watching TV and flop my hand back and forth just to hear the snapping sounds, like a kid popping chewing gum. Must have been terribly irritating. Pluggers snap crackle pop cartoon

As an adult, I was at an appointment with my orthopedic surgeon and when I slid off the exam table, both my ankles popped loudly. I didn’t pay any attention but it startled my doctor who immediately started examining them and asking if they hurt. I explained that was the norm, not the exception for my ankles.

The list goes on and on, from the TMJ issues that make every meal a rhythm section down to my ankles. I can make my fingers sound like castanets. I used to pop my knees and hips out of joints just to get a good stretch. The only joints that I think are immune are my elbows.

But the interesting thing is, when my joints are swollen, my joints don’t pop. (Which makes sense when you think about it.) Even when the swelling is slight enough not to be very visually noticeable, I can tell something is going on because my usually vocal joints go quiet.

I doubt this makes any scientific journals or gets used as an RA measure like DAS28. However, it’s important to understand our bodies and the ways it tells us what’s going on. As an example, a mother of child who had badly injured his hand noticed that the affected fingers didn’t wrinkle in water. As the child healed, the wrinkling effect returned to his hand. Water-wrinkled skin is now often used as an indicator of nerve activity in various parts of the body.

So when I get up in the morning and things go snap, crackle, and/or pop, it’s not a bad thing.

Here’s hoping that whatever pops up in your life today is a good thing. Thanks for checking in.




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I’m a pretty even-keel kind of girl. I seldom get very angry or very down. On the other side, I also seldom get giddy happy over much. I enjoy life, I’m just generally calm about it.

So when I say I’m discouraged, that’s like a -8 on a scale of -10. I’m not at the crawl-under-the-covers-and-hide-and-cry part yet, but I’ve quit seeing the light at the end of the tunnel.

My Cimzia doesn’t seem to be working.

I reported medical discussions in an earlier post about what’s next for people who don’t respond to TNF blockers. One of the interesting things about the linked article is that people can actually build up antibodies to a drug just like they can to an infection. This basically creates a resistance to the drug.

I think that’s what’s happened. I started Cimzia in mid-October and it seemed to take a while to take effect. By January, I felt like it had started helping but it wasn’t lasting the full two weeks. In addition to the 20 mg of Arava I take, we added back in 7.5 mg of Mobic twice a day.

Now I can’t tell it’s working at all. It’s like I’m going backward. When I wake up in the mornings my hands are so sore and swollen that I can’t make a fist. My feet are painful to walk on. I’ve had at least two major flares in the last few weeks.

I’m not due to see my rheumatologist for another month, but I will probably move up the appointment. Usually I go in with some thoughts on what direction we should take, but I am at a loss at this point. I’ve been on MTX, Humira, Simponi, Enbrel, Orencia, and now Cimzia. I am not a good candidate for infusion therapy. I almost think I’d rather have the RA than go through the sheer torture of trying to start an IV in my poor veins. (I had some labs pulled the other day and after trying the most likely places, they finally found a vein in the back of my hand that worked — until it blew out.)

So I feel like I’m at a standstill. What I’m doing isn’t working but I don’t have the will to move forward and try something new. If there is good news, it’s that I trust my rheumatologist and I know I can talk to her about the situation. That step I can take.

I hope whatever you’re doing is working well. Thanks for checking in.



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