Trying the pred taper... Again...

[MaxD]

godgirl: I second Marta's sentiments. I started with 75mg prednisone last March, started the taper with Rituxan treatments. When I came down to 7.5mg, some of the old aches and tendonitis came roaring back, plus painful stiffness in legs and upper arms. The docs insisted it wasn't a flare, but rather symptoms of steroid withdrawal. My blood tests showed PR3 down to normal, 0% B cells, so they were positive in their opinion. Now I'm completely off prednisone and getting physical therapy to regain some strength and to treat tendonitis in my ankle. I am exhausted with moderate activity. I'm told it may take 6 months or more to reach a "new normal," whatever that may be.

Alas, while we feel great on prednisone it's long-term side effects (beyond withdrawal) such as atherosclerosis and bone loss are scary. So if all your docs are sure you aren't flaring and recommend tapering down and bearing with the pain and discomfort - well, you have company!

[renidrag]

I got off prednisone in 2010 and bore the pain and aggravation because my CRP and PR3 were also normal. They slowly rose to a level where my Doctor wanted me back on 5 mg. He also gave me a script for 1mg also so I could also taper as I wanted. Well I went from 5 to 1 and so far so good, the pain I was experiencing again is very manageable. I do wish I could lose the swelling on either side of my neck, even when off pred those glands never went back down to normal. I think I can live with 1mg.
Dale

[annekat]

My SED rate shows a normal level of inflammation for the first time in a long time. So I suppose that means it would be a good time to try harder to taper and learn to live with whatever discomfort will result.

[Jaha]

I am glad that you are going to get a second opinion, it is really important to trust that you are getting the proper treatment. I've tried to taper several times and have problems at around 10mgs, with pain in every joint and usually end up flaring with labs all out of whack. I have also been questioning my Wegs specialist, as she sometimes seems that she ignores some of my symptoms, and always seems to tell me that it is my fibromyalgia or my COPD. I just want to know like you whether I'm being given the absolute best attention and tx for this ugly disease. I am wishing you all the best with your second opinion and our tapering off Preds

[mishb]

I have been on 3mg since 2013 and it took me a year to get there from 5mg

Good luck with the taper Jen, you can do it.

Sometimes I found that having a 10mg again (just as a top up) really helped with the crappy symptoms.

[Dkathleen]

I have been off pred for two weeks. My doc would not prescribe 1mg, so I was taking 2.5 one day, then nothing for two days for about a month. Then I went three days without for a month. The pain and depression hit hard. I knew to expect the pain, but the depression made me a bit nervous (probably from the pain). My doc told me the labs were good and to take myself off pred if I wanted. He prescribed Flexeril (didn't help much) and Lunesta. I was having trouble sleeping because of pain. After several nights of decent sleep, I feel much better. Three whole days without extreme pain. I read that drinking Gatorade May help with some issues related to pred withdrawal. I did it. Not sure if it helped, but it did not hurt.

I agree with everyone's comments. Everyone is different. You know your body. Good luck.

[mrtmeo]

I have been off pred for two weeks. My doc would not prescribe 1mg, so I was taking 2.5 one day, then nothing for two days for about a month. Then I went three days without for a month. The pain and depression hit hard. I knew to expect the pain, but the depression made me a bit nervous (probably from the pain). My doc told me the labs were good and to take myself off pred if I wanted. He prescribed Flexeril (didn't help much) and Lunesta. I was having trouble sleeping because of pain. After several nights of decent sleep, I feel much better. Three whole days without extreme pain. I read that drinking Gatorade May help with some issues related to pred withdrawal. I did it. Not sure if it helped, but it did not hurt.

I agree with everyone's comments. Everyone is different. You know your body. Good luck.

Hi DK,
Lunesta is a z-drug and causes dependence (similar to benzodiazepine dependance) just an fyi.
Have you ever tried doxylamine succinate (unisom II)?
That is an antihistamine that has worked well for over a year for my mom and is non addictive.

[mrtmeo]

godgirl: I second Marta's sentiments. I started with 75mg prednisone last March, started the taper with Rituxan treatments. When I came down to 7.5mg, some of the old aches and tendonitis came roaring back, plus painful stiffness in legs and upper arms. The docs insisted it wasn't a flare, but rather symptoms of steroid withdrawal. My blood tests showed PR3 down to normal, 0% B cells, so they were positive in their opinion. Now I'm completely off prednisone and getting physical therapy to regain some strength and to treat tendonitis in my ankle. I am exhausted with moderate activity. I'm told it may take 6 months or more to reach a "new normal," whatever that may be.

Alas, while we feel great on prednisone it's long-term side effects (beyond withdrawal) such as atherosclerosis and bone loss are scary. So if all your docs are sure you aren't flaring and recommend tapering down and bearing with the pain and discomfort - well, you have company!

Hi Max,
When you are on the high dose of pred, do you have your normal energy or do u still have the dreaded vasculitis fatigue?