Hi everyone!
I have just started reading these boards. First,thank you all for sharing your experiences and your helpful advice.
I was disagnosed just over a year ago with RA. It took about a year for the diagnosis to be confirmed because my RA blood factor did not indicate it. At first I was in a bit of denial but the pain and swelling made it all the more obvious the diagnosis was correct. I am in my mid forties and for the past year I felt relatively good and even had days that I forgot I had RA.
I take hydroxychloroquine and piroxicam as an anti-inflammatory. Most of my pain and swelling is in my fingers but some in wrists.
The most difficult part of the disease is the uncertainty. I am never sure when I wake up what kind of day I will have and it makes it difficult to plan for activities and vacations.
I am really interested in hearing from those who have been living with RA for years and how their disease has progressed over time. So many people react ominously when they hear my diagnosis and it can be depressing. How often can a person expect to have flare ups? I keep trying to examine whether something I did or didn't do caused the flare-up. Weather,diet,etc...
I have had a bit more pain and swelling lately and see my doctor at the end of the month. How do you know your meds are working the best they can and does pain and swelling indicate that the joints are actively being negatively affected?
Also,does anyone have any experience with carpal tunnel syndrome in their wrists possibly caused by the RA?
Thanks in advance and I look forward to exploring this board and learning more.
Terri
I don't have a lot of answers for you, but here are a few...
As to what causes the flare-ups, no one is sure. There are lots of theories out there--virus, infection, diet, stress, heredity. Mine hit me overnight, like a kick in the stomach. One morning, I simply couldn't move because of the pain in more joints than I knew I had. In retrospect, a few months earlier, I had a terrible ongoing pain specuifically in the joint of my fourth toe. I ignored it, and took lots of ibuprofen. Then a few months later--wham! I'm now on meds, the most effective of which is prednisone. Of course, I can't stay on that, so the doc is sneaking in Kineret, hoping it'll work, enentually allowing me to get off the predisone. For me, the two worst flare-ups happened just before trips I was to take. They sort of ruined the trips. Was it stress/excitement that precipitated it? Hmmmm....
As to how you know your meds are working. Well, I'm assuming you mean you don't know if it's the meds that are relieving the pain or is the RA in remission, and therefore it wouldn't be hurting anyway. Seems to me the only way to know that for sure is to go off the meds. I don't know about you, but I'd rather not know, than to risk that pain again.
The pain and swelling would indicate inflammation in the joints. Constant inflammation in the joints will cause damage to the joints. To make you feel better, it's a slow process. The point of the meds is to lessen the inflamation, thereby decreasing or stopping the damage. I believe some drugs (biologics?) are specifically designed to lessen the long-term damage, moreso than the NSAIDs. NSAIDs, however, cause fewer long-term side effects.
I wish you the best. I suggest you nail your rheumatologist to his chair and bring a list of questions. Remember, it's your body, you're paying him, and therefore you have a right to expect a clear answer to all of your questions and worries. I'm a firm believer in taking charge of one's own healthcare and not being afraid to demand answers.
Hi and welcome. You are currently on one of the milder DMARDS so if you still have swelling and pain your Rheumy might need to up the dose or change to a different med. Make sure you let him know just what is going on at your next visit. He is the one who will make the decision and suggest something better for you if your current meds are not helping enough. As for carpal tunnel I wound up having the surgery after a few years and it has been wonderful, but often you don't need the surgery try splinting the wrist at night to relieve the stress on the wrist ( I got a rx from my dr and had a splint custom made...insurance covered it). Check if you have health insurance you may be able to get a custom splint which is the best thing your Rheumy can help you with that too and hopefully you won't need the surgery.
RA can vary from person to person so what course you will take is not really known..that is why the frequent visits to the dr are necessary along with the blood work and xrays to keep on top of the disease activity. We all seem to follow our own patterns and you will soon see how your pattern goes...I hope it is a mild one for you. I know people at both ends of the spectrim andwe all just do the best we can.
Probably the most important thing to remember is to take care of yourself. Eat right and get plenty of rest.
Hope this helps and come back with anymore questions.
ginger
Welcome;
As Ginger said if you are still having alot of pain and swelling then you need to let the dr know so he can put you on stronger meds. I have the pain in my hands and badly in the thumbs besides several other area. The dr has me wear thumb splints which help alot at work. I usually have to wear the right one at work. One of the things I have learned since being diagnosed with this disease is you have to sometimes go with the flow. There are going to be days where you feel like you can do anything and other days where you can't even move of of a chair. You learn to try and paln accordingly, and i know people look at you and go how terrible when they find out you have ra or whatever athritis you have and you would like to choke. Yes it is serious, but I have no plans to curl up into a ball and hide in corner I have a life to live and I am going to live it. So again welcome we are so glad you are here and please let us know how it goes at the dr.'s. meme
You've found a great place for support and friendship. You'll find a wealth of knowledge here.
I'm not really sure how to answer all your questions; but I think the girls are right; your medication more than likely isn't strong enough and you could use some adjustment. That whole process is all trial and error in my opinion. It takes time to get a combo that will work well for you; and keep in mind that what works well for you today...may not work so well a year from now. It's a continuous process...and it does become frustrating at times.
Progression? I'm not sure there's a good answer for that either. Everyone is different; but with the right medication your out look is hopeful. I personally have very little apparent joint damage. (11 years out) My fingers do show slight damage (x-rays confirm) but my medication does seem to be slowing the process although nothings going to stop it completely. Over time it's taken more and more...as well as stronger and stronger medication to continue on this coarse. I'm afraid that's just the nature of this disease.
Best advice I can offer you is one I think many here would agree with. A positive additude is a must!! It's difficult at times but you have to get to a point where you can't let every set back upset you and get you down. Depression sets in very quickly once you let yourself feel sorry for yourself. Decide early on that you can do this...and learn to over come these challanges we live with.
Looking forward to getting to know you better.
Lovie
Welcome Terri
I have had arthritis for 24 yrs and I'm still having to adjust to changes and make adjustments to accommodate my disability. The best advice I have is to try to go with the flow and not panic when you have flares. Just because my feet hurt so bad I can barely walk around the house today, tomorrow I may get around pretty good. Some people go into remission and your life can be almost normal again. When I still worked I used to answer questions about how I was doing with "good" on good days and "hanging in there", on bad days. You have to be careful of giving too much detail because this disease is going to be with you for a long time and nothing bores people faster than discussing illness, especially if it isn't theirs. Keep your sense of humor.
Barb
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