I have been recently diagnosed with seronegative RA. However, I have experienced symptoms for several years and to make a long story short, I presently found out that I have permanent damage (bone erosions) due to the constant swelling in some joints. I am seeing my RA tomorrow and she is going to start me on DMARD therapy. The pain and swelling has dramatically changed my life. I have been on disability for the last 2 months and find many things difficult to do (housework, brushing teeth, writing, opening jars, walking, lifting anything, etc). The symptoms never go away, have progressively gotten worse and they "act up" at times lasting for days, weeks and/or months. My primary physician has been taking care of me the last 2 years and has witnessed the progression. The RA I am seeing turned me away 6 mths ago. Now, a Cleveland Clinic RA has evaluated me and has written a letter to primary physician that I should start DMARD treatment ASAP and to see if I could follow up with local RA (so that I don't have to travel to Cleveland each time - 4 hrs away). I had the HIV, TB, Hepatitis, etc tests done last week and my next visit with RA is tomorrow.
I am going to bring a list of topics, with questions, for my RA tomorrow and to prepare for this, I would like to ask you fine people what you experiences were re the following:
1. Last week the RA started me on 10mg Prednisone initially. Since I already have bone erosions and multiple joints swelled, is this a proper amount? Should it be more? A year ago we tried many NSAIDS (Voltaren, Ibuprofen, Motrin, Lodine, Celebrex, etc) and none of them really seemed to work or they upset my stomach. I have avoided Prednisone for a year but it seems that the risk/benefit is leaning towards taking it, at least short term. So, is a "blast" of prednisone (40-100mg) recommended? Especially since I didn't respond well to others and swelling is producing bone erosions?
2. Any recommendation on what biological drug I should push for? A year ago I did not respond well to MTX (basically did nothing).
3. Any suggestions towards pain relief either non medication or medication? I am currently taking 30 mg Kadian twice a day and Oxycodone 30 mg about every 4-6 hours. Intense pain is in fingers, wrists, thumb, spine (c7) and lower back (cerivcal). Moderate to low pain in elbows, shoulders, hips and knees.
4. Tenosynnovitis was cound in MRIs of hands/wrists. I guess it explains why my forearms have begun hurting. Any suggestions towards relief, medications or non medications?
5. Lastly, preventing flareups or permanent damage while on flare up. I want to exercise, but it really hurts the joints, especially during flare ups. So, is it possible to damage my joints further by walking, light walk- run? Small weight resistence?
I apprecaite any good faith suggestions or experiences from this board. I have read many posts and find some members to be very helpful.
I think that I am finally on the cusp of finding proper treatment and thus really consider these next few RA visits important to get on the right track and hopefully, move on with my life.
Best to all
Hi and welcome, Bubba!
For me, I find that some sort of exercise is good....now this is what I do...I'm not telling you that it's right for you. I find that if I don't move, I'm VERY stiff and sore. Now obviously while in a bad flare you might not want to do any.
I think that while you have a lot of pain and swelling, then maybe ask your doctor about an increase in the prednisone until whatever dmard or biologic you start, starts to work.,
My hands ,wrists and feet give me the most problems. For my wrists I find that using splints help while doing things around the house. I will say though, to wear them to bed, my wrists actually feel more stiff in the morning from lack of movement.
As far as pain meds go, I'm still looking for something myself that'll help. Right now I'm using Oxycocet and it doesn't do much except put me to sleep. I think you just have to try a few and see what works best for you.
Kelly
Prednisone has many evils, but it can get the initial inflammation under control so until other medications work. The dosage seems to be dependent on both the physical evaluation and the SED rate. So, the amount is very patient specific. As you read here, you will notice that some people are on none and some, like me, are still trying to taper down from a high dose.
Just let your doctor know you want to be on it the least amount of time as possible. I haven't heard of anybody going over 60 mg of prednisone and that is what I started at. It was very hard on my system. Some people would not be able to tolerate that high a dose.
Sometimes they will do a boost of prednisone, such as 40 for say 4 days, 30 for 4 days, 20 for 4 days and then taper down to 10. Don't quote any of those numbers, because they are not exact and only an example. Again, it depends on the doctor and the patient.
For pain, I am on Mobic with no stomach discomfort. I also take Vicoden and Tylenol. Lots of different options, just have to find what works for you. It's really a good idea to keep a running list of everything that they have tried and what has worked and not worked.
See if you RA ever works with a Pain Specialist. You have a lot going on. Possibly cortisone shots in some of those places would give you relief. Getting the illness under control is the best solution.
On the tendonitis, did they do an MRI to make sure nothing is torn and to see what damage is there. There is quite a few things that help. Physical therapy helps. A TENS unit might help you. They use ultrasound and TENS to treat along with focused exercises. I still hurt a lot, but without this I was starting to have shoulder impingement and absolutely could not stand the pain. Other things are heating packs and ice packs. Also, I have discovered that driving and working on the computer makes it worse. So, I have to decide what to do for the future as they don't think mine will improve if I don't change my work.
Exercise is very good, but almost impossible to when you are really flared. If you are hot and swollen, you need to back off for a day or so. Start with baby steps and mean baby steps. Then, slowly build up. Even the smallest exercises can really do you good. Pools are great. If you can get in a water therapy program that would probably help you more than anything else. Roxy is right on that one. It got me walking again.
Small weight resistance is good. But with your multiple problems, I would ask to go to a physical therapist first. Then you don't run the risk of doing the wrong ones for your problems. I love physical therapists (and yes, they give massages something which would also help you immensely). They tend to be very caring and very knowledgeable. There are some on the HMO plans though that I wouldn't let touch me. But you can pretty much tell that the first visit.
So, here's your list: ask about prednisone, ask about something beside MTX, a pain specialist and orders for physical therapy. Be sure that the RA doc writes up treatment for all your areas otherwise, they can only treat one at a time.
It is very important at your appointment to emphasis how low your functioning has become. Not being able to work or care for yourself is a very big deal. Your doctor needs to be aggressive in your treatment.
I wish you the best and please keep us posted on your progress. You have a lot that you are dealing with.
Bubba,Just wanted to say hi and welcome to the boards.
You mentioned the Cleveland Clinic so does that mean you live in OHIO? If you do you might try the OSU clinic. I see Dr. Kevin Hackshaw. There are a couple other RA docs in with him. It is an hour and fifteen minute drive but there are no others close to wehre I live.
Good luck
Hi and welcome...I dont have much to add to the previous replies, it does sound like you are on your way to some better treatment. Good luck, I am so sorry that you have litterally been suffering this whole time.