To those that are doing well | Arthritis Information

 

To anyone that is doing very well with their current RA treatment what is your level of stiffness, pain and inflammation not only in the morning but throughout the day?  I ask because I was told that my current treatment is obviously working but I feel like total crap.  It's strange because when I wake up, I'm not too stiff but after about an hour it comes on and hangs about the entire day.  Then again my RA has never been "typical."

Well, Bob-o, I thought I was doing ok until this recent motherhellovaflare that I'm still struggling with. (Think it was kicked off by stress and the move and such.) When I'm feeling "decent" as in tolerable pain/swelling/stiffness, I'm still sitting at about an 8. I have one more level to bump up to on my imuran, but have to wait until I find a new RD because it has to be monitored. I get stiffness in the mornings that lasts about 2 hrs and I'm with you where sometimes it lasts all day. Or sometimes it's there in the morning and shows back up in the evening as a special treat. I don't think any of our RA is "typical." We're just all extra-special. Bob, if it helps, I was never stiff in the morning but got progressively worse all day.  By 4 - 6 PM I'd be in hell and couldn't walk, hence the need for a walker.  About 6 months ago I started researching sleep patterns and from what I've seen, our internal circadian rythyms (never could spell that word) determine when we get stiff.  Mine were waaaay off so I think maybe that's why I got worse as the day progressed.

I'm doing pretty good these days, waking some days with minor stiffness/pain and none on other days. It's gone by the time I take a hot steamy shower, unless I do something crazy like wear heels to work. When I'm in a flare, tho, much more like you say where it gets progressively worse through the day.

Bob,

I have no stiffness and no aching joints.  I feel just like I did before the RA.  My RD treats me based on how I feel, not my test results.  I'm glad he did or I never would have reached drug-induced remission.  My ESR and CRP have been normal for a long time.

I still have problems if I have to stop the Enbrel due to infection, but I get the same great results once I start back on my shots.


Bob, my RA is not as bad as yours, but I wanted to suggest, have you ever considered switching NSAIDs?  I take the max dose of Mobic every day, and that is my lifeline.  Obviously doesn't stop the progress of disease, but keeps me out of a lot of pain. I've read that different NSAIDs work better/worse for different people.  I have been on Celebrex/Vioxx before, but not when my pain was as bad.  I feel lucky that I respond to Mobic so well.  It did take about a month of being on it before I got the max effect.  Every day is different for me. Since going off the MTX for a couple of weeks I have not regained the level of "comfort" I had prior to going off even with the increase to 10 mgs pred a day and 20 mgs MTX weekly. Hi Bob, For me I am mostly stiff in the morning and it lasts in some degree throughout  most of the day.  Mine pain/immflamation travels from place to place. Just last night my one wrist was swollen, you could see the immflamation on the top of my hand too. Looked really awful. Then about 20 min later it went to the other wrist. Really weird. or My feet will hurt and be stiff and then my knees will hurt, or one shoulder wrist and on the other side a knee will hurt. I am totally weird as far as that goes too. For me the MTX and Plaquinel aren't doing enough. I am off the diclofanic totally and would love to get off the prednisone too.  When I get up my only stiffness is in the ankle that is damaged.  Other than that I have no stiffness.  Some pain from damage and that's about it.  Sometimes if I overdo then the damaged areas hurt and also PsA will cause some pain.  Take care.  Lindy

I am not one of those considered "doing well" but I wanted to chime in here... IMO, RDs should look at the physical symptoms.... some of us are SeroNeg... and we don't show blood test levels of RA.......

Slight stiffness upon rising; but I go straight from bed to shower most mornings and I do think that helps a lot. Stiffness rarely a problem during the day unless the weather is wicked and then I notice I'll have more problems. Bob,

I am doing very well with my current treatment and I'd be happy to share what works for me.  I take Enbrel once every 10 days (progressed from once a week) which has completed stopped the majority of the pain.  I get occasional swelling and pain, but nothing like before.  I also take EPA Fish Oil and Glucosamine vitamin supplements everyday.  In addition, I try to avoid white sugar and flour, red meat, and tomatoes which has been shown to make inflammation worse in some people (I reccomend speaking with a nutritionist).  I also exercise 3-4 times per week.  I believe the integration of tradition medicine as well as the use of vitamins, proper diet, and alternative therapies such as acupuncture and masseage therapy have helped me with treating my disease as a whole.  I hope this helps, and I truly hope you find some more relief soon.
I do want to get one thing straight about the doc I have now.  She knows her stuff of that there is absolutely no doubt.  She is a very intelligent woman but she doesn't have the most charming bedside manor which is one reason I initially left.  I had hoped maybe it might be a little different this time around but I was wrong.   If anyone were to look at my joints they would swear that I have never had RA.  I don't know if the 40mg of pred I'm still on is keeping the swelling away or what but it is clearly influencing my ESR and CRP.   I do not doubt that remicade and mtx are doing something but since the ultimate goal of treatment is remission, I don't think they are potent enough.  That is why I want another opinion...to see if what is being done is all that can be done or if maybe something else might kick this RA in the butt better.