Dalmatian Days

Despite those wonderful television commercials showing people dancing and climbing mountains, biologics don’t always have such wonderful results.  It appears that my third biologic is failing.  I have not failed treatment; it is the medication that doesn’t work.

With Enbrel, I felt great.  The day before I was due for a shot, I could tell it was wearing off, but I still felt pretty good.  Unfortunately, it gradually became less effective and my doctor decided to try a different biologic.  Not one to object to feeling better, I thought it sounded like a good idea.

Humira never worked for me, though.  Never.  I really wished I’d stuck with Enbrel and asked if I could return to it.

Nothing doing.  We moved to a third biologic.  Cimzia has definitely been better than Humira, but not lived up to the high expectations I had due to the Enbrel.  I improve dramatically with every injection, but the med gradually wears off.  Lately I haven’t been getting as much benefit as I used to, and am feeling pretty crummy before it’s time for the next shot.

Of course I’ve also been tapering off prednisone, so maybe the Cimzia was never as beneficial as it seemed.

The red hot swelling so characteristic of RA hasn’t made an appearance in a long time, but my connective tissues are a different story.  Before all this started I never would have believed that someone could have tendonitis or bursitis simultaneously in so many places.

Did you ever watch the movie 101 Dalmatians?  There’s one part where one of the puppies whines, “My nose is cold, and my ears is cold, and my tail is cold, and I’m hungry.”  In the movie, it’s cute.  If I were to whine, it wouldn’t be cute, but there are days I call “dalmatian days,” where I just want to join that little puppy in whimpering, “My hands ache, and my feet ache, and my wrists hurt, and my spine hurts, and I have tendonitis in my shoulders, elbows, thumbs, knees, and Achilles tendons; I have bursitis in my hips AND did you know you can get bursitis so that it hurts to sit down, too?!”

Dalmatian days.  I seriously considered buying a cane Monday.  It didn’t happen – mainly because that would have involved climbing stairs (difficult) to get my money, then back downstairs again (ouch), hobbling to the car (no), and making my way across a large parking lot and into a store (not a chance).  Instead, I sat and played games with my kids. Cribbage, Yahtzee, and Farkle are fun ways to reinforce kids arithmetic skills and take mom’s mind off other things.

I can’t play games all the time, though.  What I would like to do is return to Enbrel.  Even if it doesn’t work as well as when I first started it, it might work better than Humira or Cimzia.  If it didn’t, at least then I’d know.  If this were all cash-only, no prescriptions or insurance involved, that’s what I’d do.  My doctor won’t let me return to Enbrel, though.  She says the next step is moving away from the TNF inhibitors and switching to an infusion.  I don’t want to do that.  Cost is one factor, but not the main one.  It’s fear.  The idea of an infusion scares me spitless.

My plan is to pull out all my old exercise sheets from my physical therapist and resume those exercises.  That should help with the hips, shoulders, and Achilles tendons, and get me feeling enough better that I can walk through my kitchen without people asking, “What did you do?”  I’m then (in theory) going to come up with an exercise routine.  One that works for me, not one of those body-builder routines, nor one of those in-training-to-run-a-marathon routines.  I just need a basic attempt-to-be-reasonably-healthy exercise routine.  After that, I’ll evaluate my progress and figure out the next step.  And I really hope the next step isn’t spending any days in an infusion center.

Wishing you no dalmatian days.

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13 thoughts on “Dalmatian Days

  1. I suggest you advocate for what YOU think is best! It absolutely makes sense to go back on Enbrel if it was working. I’m currently taking Enbrel myself and agree that it wears off almost right at day 6. I had an issue with getting my next batch and so to bridge the time and manage the pain, I tried cutting out gluten and it really worked!!!

  2. I’m so sorry these biologics are failing you. Humira did not work for me either, but Cimzia is working…seven months and still working.

    I hope you find some relief. I wouldn’t not want to go the infusion route either.

  3. Hey there, Warmsocks,

    Sorry things haven’t been working for you. I’m thinking my second biologic isn’t working for me…hmmm. However, it is an infusion and I have to say, despite my initial misgivings, I’ve found the only downside to it has been the time involved in getting it. I go to a great clinic, the nurse there is nice, it doesn’t really hurt more than a momentary pinch, the chairs are supercomfy, there’s a TV, and I just sit and fall asleep (always happy to take the opportunity for a nap!!), or do some work on my iPad or read, and after one initial whopping bruise, I learned to apply lots of pressure to the site for a few minutes and keep my arm raised after the needle was removed and voilà, no more bruisees! So overall, not a bad experience!

    I hope whatever you decide to do next works for you!! Much hope being sent your way!
    :) L

  4. Warmsocks–similar story. Seems this happens to so many of us. Enbrel seemed a miracle, but then it suddenly just stopped. Remicade was miserable and never gave me any relief. I’ve taken Orencia for, I think, nearly 3 years. It has not been perfect, but it has been great at times.

    And it is now coming out in a self-injectible form! And actually, if I do that, I have to say that I’ll miss my infusion nurses. They are like a whole other family and support for me. We talk while I’m infusing and they check on me at home if I’ve been sick. It has been an almost entirely positive experience–especially meeting other ra patients in the infusion center. I hope you won’t give up on something that might really help you.

    Good luck with those exercises–whatever we do those are important!

    Glad you are posting again and wish you were feeling better.
    Sherry

  5. So sorry to hear you are in full RA mode. I have been hesitant to go the IV route also. Mostly because of the time involved. I did read that Orencia is coming out in a weekly self injection. I have to admit that made me happy. It’s strange to be excited by a weekly self injection option I know but would much rather do that than infusion if I have to go that route. I feel that may be on my horizon and this makes it more acceptable I guess.
    Good luck with the exercise routine. Slow and steady.

  6. Oh, my, Socks. I’m SO sorry you’re feeling so rough these days. This disease is so incredibly frustrating. Even after 24 years, it still catches me by surprise. Not only do the meds often not work at all, but when the do, they often lose efficiency or stop working after a while. Then there’s the co-morbidities of RA, of which bursitis is the only one I’ve experienced so far. But tendinitis, too? And…wow. Bursitis, tendinitis EVERYWHERE?

    My heart goes out to you, and I’m sending all the warmth, comfort and peace I can your way. I hope you and your doc can come up with a remedy that calms your fear along with your pain. In the meantime, a gentle hug for you. Take care.

  7. Not sure if you know this but apparently our bodies build up a resistance or antibodies to these medications thus making them fail over time. Yup, even our bodies won’t let the meds stay around too long. I am pretty sure that is why your doc wants to try one of the infusions, they are a different class of drugs so to say. I say go for the orencia which is going injectable. I loved the freedom of being able to do my own shots and never did the infusion meds but my reasons where not for the length or being tied to an infusion pole, mine were for health reasons only. So if you are willing and still want that freedom you seem to love, perhaps you can talk over Orencia with your doc to see if that wouldn’t be a good compromise for the two of you. Good luck and hoping you find a medication that kicks back in for you.

  8. I am so very sorry.

    We seem to be in the same boat of pain right now. I cried all the way in to work today and I’ve cried all morning long. I hate the painkillers because they make me too sleepy to work, but I hate the pain. The Humira doesn’t last long enough. The steroid shots don’t work the way they’re supposed to, and the prednisone isn’t doing the trick. The mtx is just there.

    Sometimes I just want to die and get it over with. Of course, I’d never do anything to make that happen, but if I keel over one day I will for sure have a DNR in place. This is hell on earth.

  9. Socks, doggone it (no pun intended). Like your recent experience, I don’t have a lot of swollen joints, but I do have the pain and damage (and I have two artificial joints to prove it). It’s such a blessing when you find something that works and such a disappointment when you have to move on to something else. I have lousy veins, so I’m not sure I could go the infusion route even if I wanted to. Maybe you can try the Orencia like the other posters have suggested. Good luck to you. Hugs and warm thoughts.

  10. Hi socks,

    I read your blog regularly. I’m so sorry you’re going through this too. I think once you mentioned that your doctor thought you might have PsA too or instead? I only mention it because that’s what I have, and I have tendonitis in about 12 places. And I’m 31. But I do have particularly bad achilles tendonitis. I’ve been in PT for 4 months (this is the 4th. time), and I’ve started humira just this past March. I don’t think it’s working too well. I’m supposed to see a rheum. in Oct. New job and first apt. Anyways, hoping for you that the itises ease up!

    Melissa

  11. Ah, finally someone else with RA (we’ll assume that’s it for now….eh?) who also has the bursitis and tendonitis issues everywhere! Sorry to seem so excited over that. I know it sucks because I’ve been through that for years, though without the achilles or side hips. Had it in the butt (they call that Weaver’s or Tailor’s Bottom), had it in the wrists, thumbs, upper arms, shoulders, shoulder blades…now some weirdness going on in the tops of my feet….

    I’ve tried to research the generalized bursitis/tendonitis connection, but no one seems to see fit to really tie it into RA, other than to say it’s more common in RA’ers. Or to write it off to fibrositis, which eventually morphed into Fibromyalgia, but I don’t think they are the same thing. Perhaps it’s a subtype of RA, who knows. I know I posted some abstract here a long, long time ago that did assert that perhaps RA starts in the tendons and then spreads to the joints. Some argue it starts in the synovium. Still others say the bone marrow. All these decades of research and they still can’t agree on where it really starts. Let’s just say in the blood somewhere, K?

    I wish for your sake, and all our sakes that you weren’t feeling like a very painful and weak 95 year old right now. Maybe you should push for the Enbrel again. I know you really don’t want to go back on pred, and I understand. But maybe you need another bridge until another drug can kick in. If you go the infusion route, make sure you get plenty of IV steroids and plenty of antihistamines before hand, and that they start, and probably keep the infusion going pretty slowly, the whole time. Don’t let them speed it up to fast just to get you out quicker, so schedule your start times for very early in the morning. This seems to lessen the chances of allergic or other type infusion reactions.

    After being on mtx for years, it too finally started waning before the next dose was due for me. The split dose has helped, and did help me get off the prednisone. I need to track if some of my more painful days come right after the doses, as I did not have that before, at least that I was aware of. But we finally have more low fronts moving through, so hard to say. And I’ve been off the prednisone for about a month now. I am feeling an increase in RA actvitiy with some slight swelling, so need to figure out something new. Not supposed to see my new rheumy for second time until November. Thinking I need to try to get that moved up. It makes me think that prednisone does have some at least slight dmard effect.

    Hope you can get this worked through and that the PT regimine helps.

  12. THANK YOU for all the support. Y’all are terrific.

    @Mammawithra: I’m glad to hear the gluten-free is helping you. That’s terrific! I haven’t had that good fortune, but have heard that it helps many people. For me, the Enbrel gradually started lasting longer, so that eventually it lasted the full week. I hope you experience that, too.

    @Joan: Thank you. It’s good to hear that Cimzia is helping you. I notice a difference when I take it, but not nearly as much as I’d expected. Things’ll work out, though.

    @Laurie: It’s good to hear positive things about infusion centers. Thank you. I hope I don’t ever need the tip about applying pressure to avoid bruising, but will remember it just in case.

    @Sherry: I’d seen the news release that Orencia was going to be self-injectible. That’s good news (much less expensive). I haven’t done any exercises yet (but I have weeded my garden and given a few baths to horses – that should count, right?

    @Mary: Are you already on a biologic? Insurance tends to dictate which ones people try first. Infusions just sound so incredibly scary. But I know I was scared of the shots before I started doing them and now it’s no big deal.

    @Wren: Not everywhere. My neck doesn’t hurt ;)
    Thank you for your warm wishes and kind words.

    @me: I’d like to elevate this to a post of its own.

    @deb: My rheumatologist said that sometimes people develop antibodies to the TNF inhibitors. That’s why she’s thinking of an infusion next. If three TNF inhibitors have failed, there’s not much point in trying the others in that class and it’s time to move on to something else.

    @Carla: Good pun :) I mentioned to my rheumy the cost difference between infusions and self-injections, and said that I’d prefer to stay with self-injectibles as long as possible. With any luck, the Cimzia will start behaving itself. At least I haven’t had to get any joints replaced (yet – let’s hope it stays that way).

    @Melissa: Congratulations on the new job! My rheumatologist says that the exact diagnosis doesn’t matter because treatment would be the same, regardless of which type of autoimmune arthritis I have. The more I learn, I’m convinced that my real diagnosis is PsA (or both PsA and RA). Last time, rheumy said maybe AS with peripheral involvement, but really she’s not sure and doesn’t think anyone can find a definitive answer (and that she’d like another pelvic MRI). The only reason I care what the diagnosis is, is that if it’s PsA, then that would automatically change my daughter’s diagnosis and treatment and I want her to feel better.

    @Chelsea: Your comments are always so chock-full of useful information. Thank you!
    It’s nice to hear I’m not the only one with tendonits & bursitis all over. But I’m sorry you’re experiencing it.
    Mtx: I’ve switched to injectible and it seems to be helping a lot more. Are you on tabs or injectible?

  13. Pingback: Wanting Out « ∞ itis

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