Is This Remission?

Question mark

I’m pretty sure the answer is “no,” at least in the way I understand remission.  But these days, I am questioning my understanding of remission.  This is definitely a case in which I’d like to get input from you, my readers who also have chronic illnesses.

I don’t think that I am experiencing a “true” remission.  I am still very much dependent on many different medications to keep me working.  We actually increased my Remicade a month and a half ago (seven vials – yowee!), so I’m definitely not anywhere close to drug-free remission.  That may not be a realistic goal for me, although it sure would be lovely.

But am I in drug-induced remission?  This is what I’m trying to figure out.  If I am, it’s not like I thought it would be.  My idea of remission was one of two things: either I would go back to feeling the way I did before I got RA, or I would feel great, like I do when I’m on high doses of prednisone.  Since I’ve had very little permanent joint damage, those ideas didn’t seem that unrealistic.  But that’s not what I’m experiencing.

Here’s how I am: my bloodwork looks great.  My joints look great.  I haven’t needed a cane in ages, and I’m beginning to feel that I might not need my disabled parking permit anymore either.  I haven’t had a flare that truly knocked me down in awhile now.  I have tapered completely off prednisone and didn’t go into a flare when it was done.  Little by little, I am regaining my ability to do things I couldn’t do before.  I think I really am getting better, but so slowly it’s been hard to notice.  And I didn’t think it would be like that.  I thought that once we reached the right medication combination or dosage, I would see an instant, dramatic improvement.

I don’t really know what’s going on.  I still have fatigue, and I still wake up stiff and take awhile to get moving.  Also, I had a stressful day yesterday, and had what sure seemed like a stress-induced flare today.  Very interesting, since I have never had one – it’s usually doing too much or getting too little sleep that make me flare (or, sometimes, just randomness).  It was a mini-flare, nothing like the flares I’ve had before, but I felt awful this morning, took a long time to get moving, and my left knee is very sore.  Doesn’t being in remission mean that you don’t get flares?

I am seeing my rheumatologist tomorrow, and am interested to see what he has to say about this.  I still think a lot of my fatigue and achiness come not from the RA being active, but rather from the after-effects of the RA having been active for so long.  I am still about twenty pounds overweight, and my muscles have tightened and atrophied over time from disuse.   I am still recovering from adrenal insufficiency.  I also have a few other conditions that have been acting up, like asthma and interstitial cystitis.  Am I feeling mildly crummy because of them, and not because of RA?  Sometimes I forget that there are other reasons besides RA for feeling bad.  

I don’t want to go swimming in that river in Egypt, and I feel that I’m in some danger of doing just that.  But I also don’t want to live life like I’m sicker than I really am right now. 

Your thoughts?  What does “remission” look like?

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  1. Chelsea says:

    I think you are not in complete drug induced remission, but perhaps in a drug induced low disease activity state. That’s the way I’ve been in the past, but unable to get off of prednisone, and have increasing disease activity now. Yes, sleep will affect it and stress too. And for sure having low adrenal activity. Maybe have some osteoarthritis starting to set in? I do. Be glad you’re in the state you’re in currently, baby yourself when you need to, but keep trying to be more active when you can! Good luck with this hanging around for a long time I hope.

  2. Amanda says:

    I have no idea but when I saw your thread all I could think was “Oh I HOPE so”.

    I’m glad things are looking up for you. It gives the rest of us hope.

    What is your remicade dosage? My doc just increased me to 500ml (I think). She said I WAS at the lowest dosage at 300ml. I’m guessing based on that that you are at 700ml? I always try to compare to see what’s out there. Thanks!

  3. Cathy says:

    I am not sure if this is remission either, but I am so happy that you are feeling better.

    Years ago I was in what my rheumatologist considered “remission”. I was still on drugs but we were reducing. I had more good days than not. I don’t know if you have to be in that state for a certain amount of time for it to be considered “remission”.

    Please keep us updated.

  4. Gisela Peters says:

    When deciding whether a patient is in clinical remission, rheumatologists consider a number of factors: bloodwork, number of inflamed joints, length of morning stiffness, pain level, function, etc. I have been in clinical remission for almost a year. Yes, I am still on medication (MTX) and probably will be the rest of my life (or until liver/kidney damage occurs). There is still some occasional pain, twinges or aches, but I feel so much better now, and I function almost as well as before RA. I suppose this is as good as it gets. Best to you.

  5. Wren says:

    I’ve also wondered what “remission” is, exactly. And that’s even though I had one that lasted for several years, drug-free. During those years I experienced almost no RA pain or stiffness, and no RA-induced fatigue. I almost forgot I had RA, and believe me, I was very grateful. I did have a few flares during that time. A couple were moderate, one was severe, and the rest were quite small, lasting only for a few hours. Just enough, I guess, to remind me that I did, still, have the disease.

    The remission ended when I developed a lumpy pannus on my right wrist. It was, for the most part painless, and when it happened I didn’t associate it with RA. So I was surprised when it was diagnosed. I ended up having surgery on that wrist to remove it (the lumpy stuff) before it could impair the mobility of that hand and wrist. Not long after that, I started having RA pain in both hands. That brought me back to seeing a rheumatologist and taking meds. That was almost three years ago.

    My RA is under far better control now than it was when I was first diagnosed. I haven’t suffered a terribly severe flare in any joint for a long time. My hands twinge and ache almost daily, though, even though my rheumy tells me my bloods are great. So what IS remission? I think that, like the disease itself, depends upon the individual patient. This disease is so incredibly variable!

    I’m SO glad to hear that you’re feeling so much better, though. I hope it continues — and improves — for a long time to come. I’ve learned that the best way to deal with RA is to take it a day at a time, and to do the best you can with each day. Enjoy the good days, keep taking those meds, and keep your outlook positive. I believe that we who have RA are fortunate in that we DO have good days.

    Best wishes for you. You’re in my thoughts, RD. 😀

  6. Helen says:

    When I felt the way you describe, my doctor did describe it as “remission.” My disease was no longer actively damaging my joints. I still had stiffness and some low-level pain, and especially fatigue. And since I have a lot of permanent damage, I still had limited range of motion. But, as I said, damage was no longer actively occurring, my bloodwork was great, and my joints weren’t inflamed. Like you, I was still on medications.

    I’m so glad to hear you’re feeling better, regardless of what the technical term for it may be. I hope you continue to feel good!

  7. oofer says:

    Remission? Maybe not. What you may have to remit, however, is your expectation of remission. I am so happy to hear that you are doing better, AND that improvement is slowly moving in the right direction. I consider this to be very good news, indeed!

    As you may remember, I was going to my first infusion yesterday with no little trepidation. I went to the Portland VA’s infusion clinic. It is sparse on decor, but we are talking a Veteran’s Medical center.

    Sparse, but with a great staff. All in all I was there for four hours. The infusion itself took about two hours. A half hour on either side of the infusion was dedicated to premedication with Acetameniphen and diphenhydramine, and a waiting period afterwards to make sure that there was no allergic reaction coming along. The rest of the time was waiting for the pharmacy, always incredibly slow in VA’s, to get the infusion mixed and delivered to the clinic.

    We did have reclining, comfortable chairs to sit it. There was constant monitoring of my vitals and my opinion of any discomfort. The nurses there are just first rate, and friendly. They allowed my wife to sit with me. We played games, read, and even shared a light meal. I also have to give my wife a lot of credit for staying by me even though she hates the site of needles and blood. Of course, the nurses immediately fixed me up with a shunt in my hand, drew blood, and otherwise made us feel at ease.

    All in all, my worrying came to naught, and the experience was quite tolerable. I felt a bit tired afterwards, and I went to bed earlier than usual. And even though it has only been a day, I am feeling less pain. Especially, upon waking, but also during the day today.

    I, personally, feel better about my status as a person with AS. Something is finally working. Now if we can just keep this up, I will be profoundly gratified.

    I am also a bit atrophied from my diseases, but there is light at the end of the tunnel for the first time in a long time. Anxious to hear how your ointment went with the Rheumatologist….

  8. Cheryl says:

    I don’t know very much at all about what you’re going through, except a vague allegory to my mother’s struggles with MS, which I also don’t very well understand. But it seems in both diseases true remission is rare and hard to identify, and somewhat fragile.

    If you had to spend every day wondering when the bottom would drop out of remission, then I’m very happy for you that you are feeling a solid “better.” If there were some way to expect a lengthy remission, I could see why you’d want to get there. But I’ll take “better” for you and for my mom any day.

    Love you!

  9. oofer says:

    So—update on what remission looks like.
    I had the second loading dose last Tuesday, 8/31. It was the same procedurally as the first described above, with the exception of the Pharmacy inexplicably mixing and delivering the infusion quite quickly.

    Seem to be having a pattern of post infusion reaction. Luckily, not severe. I feel very drained after, tired and a bit listless. But pain seems to abate during the infusion. I go to sleep early, and wake up still a bit disoriented. Within a day or so, I have a bout of loose stools. That’s it. Not so horrible!

    Right now, four days later, I feel almost no inflammation or pain. And renewed energy. This feels good, and I am thanking my lucky stars to be free from the incessant pain that I have been in for several years. I am noticing that I am taking, as of yet no pain meds.

    So lucky me, I guess, but a this is just an anecdotal account. I will be interested to see how long this grace period lasts. With my first loading dose pain started coming back at about one week.

  10. Remicade Dream says:

    Oofer, that’s great! 🙂

  11. Dee says:

    Every day I wonder if remission really exists. Do I really feel as bad as I think I do or am I turning into a big cry baby. I’m due to start remicade for the first time on Monday. I’m hopeful but at the same time, afraid.

    I’m a hospice nurse and I recently took two weeks off. I was hurting and exhausted and just couldn’t bring myself to care for others. My empathy had been replaced my apathy. So I stayed home for two weeks, took steroids and basically did nothing. I felt much better and thought, “Okay. This is doable again. I’ll be fine.” Two days back at work and I was exhausted again, apathetic and embarassed that I still don’t feel well. You see, I had to explain to my patients why I took off and to my co-workers why I took off. I guess, I didn’t have to but, being honest to a fault, I did. Now I get to the hear, “You don’t look like you have arthritis.” And the never ending advice about changing my diet. I’m afraid they are right. Should I even start the remicade. Afterall, I’m RA factor negative. Maybe there is some other reason for my imflammatory markers being elevated and for my marked osteopenia. My mother in law has had RA for years, she works every day without anything other than mtx. Why do I need both? If Remicade is for severe RA, and I’m RA neg and people who are RA neg are supposed to have a lesser disease process, why do I need it? So, I’m right back to can there be a remission from something that I wonder daily if I’ve just made it up in my head. Are the changes in my fingers, elbows and feet that see, that none of my friends or family see, just a symptom of craziness? Do I have to crawl up the stairs in the morning because of poor diet? Do I have to colapse on the bed after work instead of hearing about my kids’ day because of pure selfishness? Can there be remission from crazy? If there is, God, I pray that the remicade is what brings it on!

  12. oofer says:

    Dee, It is reasonable to have some apprehension starting a new therapy, especially Remicade. I sure did. And frankly, still do, though I am two weeks past my second loading dose.

    Everyone reacts differently at the start, I think. If you can, have someone go with you. I found after the infusions I am very listless and feel tired. I certainly shouldn’t have driven myself, nor will I in a couple of weeks for my next infusion. Having someone with you is a safety precaution. If you have an allergic reaction, speed is your friend. If everything goes well, as it most likely will, you will have a pleasant time sharing the experience. Play a game, read a book, eat a snack.

    Make sure they start you on a slow drip. My research is that people do better the more slowly the infusion takes. Certainly, no less than two hours and hopefully more time.

    Apprehension is normal, and so is relief if it works for you. I hope everything goes well for you on Monday!

  13. Muffy says:

    I really miss remicade. That is the medication that i did the best on for the longest so far. I miss the nurse that did my infusion too. (I had to stop because i started to react to the medication.) Candy was the BEST. I still seek her out and give her a BIG hug whenever i am in the docs office when i know she will be there.
    @ Dee, do take someone with you. I was never able to drive home from my infusion.

    I don’t know if I can believe in remission. I want to, because i really want to experience it. but right now, i feel like the best i can do is take the good days for what they are and try not to do TOO much. and respect the pain days for what they are and try not to do too little.

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