HealingWell
Search Close Search
☰

describe your return to RA from remission

Support Forums
>
Rheumatoid Arthritis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/2/2012 1:36 AM (GMT 0)
Is there anyone out there who went into a long remission only to have RA return?
I have been non-medicated and in remission for 1 1/2 years.
I had a very severe onset that rendered me a complete invalid for 3 months and it took me a good year after that to be fully functional. So now I am noticing things like....I'm taking advil near bedtime because I'm aching. But I blame it on things like my exercise routine. Only problem is- exercise is not new to me- I've been doing the same program forever. Except I've added jumping jacks but even those I've been doing for at least 3 weeks now- my hips have been hurting....must be those jumping jacks. I find I am not wearing my beloved high heels to work and don flip flops instead. I wore my high heels to work and went grocery shopping afterward....by the time I got out of the store it felt like my feet were broken! Even when I took them off they killed as did my lower legs. I blamed it on- you just got old and can't wear heels for long like you used to. My thumb joints have been painful if I bend them- so I try not to bend them. I've been getting some electric shock like pains in my big toe joints (happening now as I type and I have taken my advil this evening) and today I got some in my hand so strong I had to yell ouch a few times.

I don't want this to be RA coming back and I don't want to go back on medicine.

Is this how it returns? All I know is I once went from being completely healthy to crippled over night. That's the RA I know. Once it got under control I have always had low level pain that came to be 2nd nature to me- I never had flares. I went off my MTX due to a rise in liver enzymes and while off of it I didn't have anything more than that same low level pain so the doctor said I could stay off of it. I have always been sero negative so blood tests don't mean anything for me. (Did have high ESR & CRP during onset only)

Is there anyone out there who can relate?
Posted 6/2/2012 3:33 AM (GMT 0)
Have you noticed that there is absolutely no literature on this? I looked and looked (although I was really looking at the emotional impact) and even my drs couldn't find anything.
So I started writing one.

I wasn't in full remission. I still took my meds every day, still took my pain meds. But so long as I did I felt good. Just a 2 everyday. Sometimes I could totally forget about the pain. It only pasted about five months, but I felt like as long as I took my handful of pills everyday I could live normal. I began to plan for the future again, I began to live again.
Then the pain just came back.
The plaquinil stopped working, but I didn't know that at first. It was a gradual change at first, but then it just hit me again. I don't balloon swell, but the swelling in my wrists and elbows cut on nerves and I develop carpol tunnel on both sides and golfers elbow on the right. It's like hitting your funnybone- but it lasts over a month.
Quality of life November through March pretty much sucked.
I had to re-learn my coping skills over again, because as I had gotten better I had changed them to my situation, and now had to jump back. I greaved my planned future, my thoughts of being able to live normally, the same as I did when I was first diagnosed. I went through the full greaving process.
I'm still in the phase where I'm finding something that might work. I started humara to go with the methotrexate and that seeker to be working well, but now my liver enzimes are 3x what they should be. More med changes. More fatigue and nausea. More pain.

I can only imagine what the process was for you after years of full remission. I can say that the slow build to a sharp spike in pain levels sounds like what happens to me.

I would like you to please email me so I can get your full story. I would so much like to interview you for my book.
Posted 6/2/2012 1:34 PM (GMT 0)
For me it's hard to tell as I have pain all the time from other illness, but I guess when I'm in remission
my hand doesn't hurt so bad in the joints and the swelling is down, so that's a remission for me, when the swelling is down
maybe you could do a journal when your swollen it probably means your in a flair...But this could be different for each person
I guess... maybe making a journal would help, I'm in a flair right now as my finger joint where the RA is, is hurting
and swollen and I feel off over all, Hope this info helps...
Hope you can get a low pain day soon and go into remission...I wish I could get years of remission, but probably won't as I can't tolerate many of the medicines used to help treat RA and certain medicines my RA Doctor won't put me on due to my bad immiune system...
Prayers to you...

Post Edited (Chartreux) : 6/2/2012 8:38:03 PM (GMT-6)

Posted 6/2/2012 4:02 PM (GMT 0)
 

Interesting!!  I haven't been off of RA meds since I was dxd. but I have had several years different times in "remission" with no pain and usually not tired much.

When I started feeling weaker,  more tired the sore muscles and painful joints starting again, we knew it was "party over" and time for another drug change.

Hoping that you get on something that works for you in good time, if it's not just the exercise or shoes causing the pain.  That was very brave of you to go totally off RA drugs.  Nice that you had some time off of them.  I envy you being able to wear high heels.  I gave those up for the most part(98%) about 10 years ago. 

Posted 6/4/2012 2:19 PM (GMT 0)
Yes, this is interesting! Sorry, I have also been on meds and more have been added to the bunch since my RA has been progressive since diagnosed in 06. I have never been in a remission. Have always needed at least the MTX. Tried to get off of that a few times and it was a complete disaster. Since RA is an auto-immune and the body is basically attacking itself, I am not sure how that would stop even temporarily? Or how a remission happens. I've asked my rheumy before and he says I will not have one..so nice to have one who thinks on the positive side!! tongue

I haven't worn high heels in years! I leave those to my daughter, she has many cute pairs..it is summer and I have tons of cute flip flops..thank goodness for flip flops!

Posted 6/5/2012 1:46 AM (GMT 0)
I had trouble exercising today. My wrists have always been my sore point so anytime push ups or any exercise that causes you to be in that type position with your wrists have been out. Or I would lean on my forearms instead. Well today you were supposed to be on your forearms while you were doing leg extensions. Well...they killed. To top it off 4 hours later they still feel tender. So do my shins. I think this pain is tendon related as it is not in joints. Does anyone get that type of pain? I do remember having it along with joint pain when my RA was uncontrolled. My hips were bothering me today too but I did have my high heels on.
Posted 6/5/2012 4:00 AM (GMT 0)
I developed RA at 23. One day perfectly healthy, the next day sick sleeping all the day, felt like I had been hit by a bus. Doc told me I had RA or JRA despite no swollen joints-blood work was normal. 8 months later blood work confirmed RA and my knee looked like I had a softball in it.
I was ill and in pain for three years-although not as ill after I started meds as before.
Switched Rhuemys. Started plaquinil. Long term remission. I stopped the plaq after a year and was only on sulindac (NSAID) for about 7 years.
Then I got sick again. Started with a little swelling in my knees that would come and go. Then hands, elbows, feet etc. Within a few months I was totally incopacitated-could barely dress myself or walk across the room. I didn't have a rhuemy.
I arranged to go back to the doc who put me in remission the first time. I have been seeing her again for 4 years. It took about a month for her to get me feeling good. Six months to get me off prednisone. And now I am concidered well controlled-not in remission because I am on a ton of meds-but definitely feel better again.

I hope you end up doing well-and if you are starting to have symptoms make sure your rhuemy is aware of what is going on and on top of things.
Posted 6/7/2012 2:20 AM (GMT 0)
yikes sjkly- other than age at onset your story sounds like mine. So maybr RA is creeping up on me again and will lay me out again. :(

I'm going on vacation in 2 weeks and I am going to live in denial until I get back.

wish me luck that I make it.
Posted 6/9/2012 11:11 AM (GMT 0)
Make sure you get back to a rhuemy and get started on meds before you get to the point I got to. I hope you enjoy your vacation and do well.
Posted 6/3/2015 7:27 AM (GMT 0)
I have been in remission for more than five years. It is a miracle, no medication at all. I began getting colds when I continued the medications, so I gradually was weaned off them. Recently I walked quite a bit, both on vacations sightseeing and on the treadmill exercising to lose weight. My knees began to swell, and I returned to my doctor who said it was injury rather than a return of RA. However this last time on a follow up visit, he said there were a few RA crystals in the fluid. I am to see him again in six weeks. I am trying to think if I am doing any one thing differently, eating differently or whatever, to bring it back on. The only thing I can think of is that both times I stopped daily supplements of vitamin C but honestly could this do it? Both times I also walked a lot to lose some weight. I lost weight quickly too. I am back on the vitamin C and it appears to me to be better, also the cortisone shot helped, but I am thinking there has to be more to it. I am 67, got RA at menopause at age 55. After the methotrexate and Humira treatments for a few years, all symptoms vanished. It was so wonderful, although through bloodwork we saw that rheumatoid factor was always present. So what is making the RA return? Stress? I always have stress. Diet? I gained about 20 lbs. in the past few years. Yet I wasn't this heavy when I got RA the first time. We are checking my fluid in a few weeks, and we will see if it is back full strength or gone again.
Posted 6/3/2015 11:15 AM (GMT 0)
I was in remission for 2 years back about 15 years ago ( Doctor took me off meds completely) and when it ended I began having a lot of pain in my connective tissue and tendons. RA has always affected me this way although when I am badly flared it is much more evident in my joints. I began to have swelling and much more fatigue as well after gym visits and it seemed like it took 3-4 days to recover from them.

My SED rates went way up and that was enough for my Doctor to get treatment underway again. We tried the sulfasalazine but it had much less of an affect and after a few months we moved on to Enbrel.

I hope that you feel better. It is amazing that you have been feeling so well, I hope that it returns and you don't need to get going on another round of meds.
✚ New Topic ✚ Reply