For four years (since my initial RA diagnosis) I have been so fortunate to be completely under control with no pain or stiffness. Then due to a series of stressful incidents I began a bad flare in late Feb. It was off and on for 6 weeks and in early April I was able see my DR. He put me on 10mg. of Pred. for 2weeks. He said everything was under control and started to wean me off. I did 4 days at 9mg; 4 days at 8 mg, etc. till I reached 5 mg and went to see him again. He said things were great and gave me a different schedule..1 week at 5mg, 1 week at 4 mg, etc. and end with 2 weeks of 1 mg every other day. Everything was going so well until the 7th day I was at 3 mg. I woke up with a very sore, red, swollen ankle. It did go back to normal in a few days so I just continued the weaning process as perscribed. At 2mg. I noticed my hands were starting to get stiff & painful. Again, on the 7th day at 2 mg my ankle swelled up. The next day I went to 1 mg and wow did I feel horrible. Pain everywhere, worse than the flare. I called my doctor who said my body needed longer to wean off the pred. He put me back at 2 mg. for the next 2-3 weeks and then will go to 1 mg for maybe 1 month. My ankle is better, but still swollen. He said as long as it is getting bettter he would prefer I keep the dose as low as possible but I can go up to 3 mg if I feel I need to.
Has anyone else had this experience? This was the first time I took pred. I am worried about the side effects and swear my tummy has become very bloated lately. I normally take plaq & sulsalate. When I was on bextra I never had problems (darn FDA!)
It does have awful side effects. I am on 12, down from 15. It has been really painful for me lately. I am just going down in .5 milligrams at a time now. I need to be on something else to get off it. The MTX alone is not cutting it. I had to be on such a high dose due to such severity of my initial flare.Water weight problem might be helped with diuretic. Ask your doctor.
Yes, your experience is typical. I'm like arionara, I am at 13 coming down from 20 -- and not succeeding. It is a very slow process, especially if you started at higher dose. Just keep trying. Your doctor seems very reasonable in his approach.
arizonara, I hadn't thought of trying the .5 at a time. How often do you decrease it? My doctor has me going down 1 mg a month.
Poof, without the prednisone, you can have damage to your joints. Of course, if you take high enough doses, you can still damage them.
I guess that's what we need the doctor's for.
That sounds like my typical roller coaster ride. On-off, increase-decrease. If that magical combination would just stay the same we's really appreaciate it!Am weaning from 30mg and am at 13mg. I wean at 1mg a week, a very long, slow process but seems to be working for me. I have good days and bad days. I have to wean because I need to see if the Remicade inf. are working. Your tummy being bloated is normal, it will go down as you wean. Stay focused and let your Dr. know of each and every change.Lindy, I couldn't even handle the 1 a week. And, I cannot seem to do the 13 successfully. My tendons are really swollen in my bad shoulder, but so are my joints.I've thought about weaning down 1 mg every 2 weeks but I'm so inpatient. Have my 3rd Remicade inf. coming up in 2 weeks. Am still hoping. How long have you been at 13 mg.? I just start 13 yesterday.
At the first of every month, I try to go down 1 mg. This is my month to go down to 13. But my pain and inflammation is so bad that I have been upping it to 14-15 about every other day. Today, I've stayed at 13, but I'm really paying for it.
I left a message for my doctor regarding the fact that I can't seem to get down with really swelling. The tendons are the worse. It's my shoulder, the neck muscles, around the neck, the elbow, the wrist and the fingers-- all mostly on the left. I am asking that they increase my MTX back to 20. I've not being doing well at all since they dropped it because of my blood work. Or, possibly doing the Enbrel twice a week. I'm sure that he'll come up with something else. But at least maybe they will get the idea that I'm not doing well.
I have never got below 7.5 in the entire 6 years that I've been on it.
It is discouraging to say the least.
But I think you might be going down too fast on the prednisone rather than the Remicade not working. Our adrenal glands get used to the dosage and that's why we can't just stop it. We would go into adrenal shock. So, maybe you are a bit too impatient and making yourself suffer more than you should. I have heard that some people will alternate, such as 13 one day, 14 the next, then 13. Arizonara said she goes down by .5. Maybe you could just take a half of the 1 mg tablet or 1 of the 1 mg. See if that makes you feel better. If that works, then you know it's the prednisone and not a failure of the Remicade. It does take time to get down. 30 is a high dose to come off of.
Hope you feel better. Hope for me today, too. My energy is gone, the pain is up and everything is swollen. But it's Saturday night, and that's usually one of my worst times. Gets old though.
Thanks for all the info. When I was at 3 mg I thought, wow this is great and then at 1mg everything swelled up, especially my feet! I had to walk 2 blocks to my car at work and I cried the entire way. Awful!
Now at 2 mg, I can walk but my feet have really retained water. So the water makes it exhausting to walk.
Then do ask your doctor about getting on a diuretic. My feet swelling and hurting is part of the reason that I went on it and my feet hurt so bad I could barely put them on the ground.
A lot of people here have also mentioned that RA seems to have hit their feet first.
Other things that help are very comfortable, supportive shoes and support hose. Also, elevate your feet above your head when you rest. Soaking them in either warm or cold water also feels good.
There was a previous topic on this, but I don't know what it was called.
3 mg is not much. But since you've gotten down to 2, maybe you should ask the doc about the water retention. Maybe it is a simple answer to get you feeling better.
I was on 20 and got it down to 5. I thought I was doing pretty well. Then I woke up & couldn't walk. That was 2 - 3 weeks ago. So, I went on the Celebrex and upped the prednisone to 10 mg. Right now, I'm feeling pretty good again. My RD said to not try to come down from the prednisone again until I see her next month. I'm really anxious to get off it, but I CAN'T feel as bad as I've been. It's really frustrating. I hate this stuff. I hate the side effects. But I need to be able to function.