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Brooke
06-10-2010, 12:51 AM
Ok, so I know you are supposed to taper prednisone very slowly but my question is: If you taper too quickly and symptoms start to arrise, is that a wegener's flare or would that be a symptom of tapering the prednisone too quickly?"
I read one of the symptoms of tapering prednisone too quickly is joint pain. So, that wouldn't necessarily be associated with Wegener's correct? I myself do not have joint pain.

Jack
06-10-2010, 01:01 AM
There are two problems associated with reducing Pred too quickly. The first is that the shock of it might bring on a Wegener's flare, this will usually be signaled by a return of your original symptoms. The second problem is that long term steroids will shut down the adrenal glands and it may take a bit of prompting to get them started again. If you have been on Pred for a very long time, it may not be possible to ever give it up completely. The symptoms of this are more vague with fatigue, weakness and a general feeling of being unwell to the extent that it can prove fatal.

Sangye
06-10-2010, 01:17 AM
Brooke, even though I'm tapering pred extremely slowly, I still go through periods of severe pain (joints, muscles-- basically every square inch). Fortunately I've had Wegs joint pain so I knew it wasn't that. It felt totally different. I've often felt lousy for a day or two after dropping down a bit. The key is that if it's due to the pred, it goes away. If it's due to Wegs, it doesn't.

Brooke
06-10-2010, 01:42 AM
Thanks Jack and Sangye - I will watch my symptoms carefully while tapering the pred.

Jack
06-10-2010, 01:43 AM
If it all starts going wrong, put your dose back up for a while and try again later.

elephant
06-10-2010, 08:43 AM
I concer with the above statements! :)

jola57
06-10-2010, 03:26 PM
Brooke, I have been tapering from 15mg very very slowly, about 1mg per month then from 10mg I am tapering 1mg per 1 to 2 months. I am down to 5mg. Last year I tapered too quickly form 10 to 5 and flared badly, not only joint pain but coughing up blood. Had to go on cyclo for a year. So this time I am going as slow as I want. I have been on 5 for a week and feeling good :)

Sangye
06-10-2010, 10:47 PM
That's great, Jolanta!! I remember when you thought you'd never get below 10mg. Ha! Take that, Wegs!

What's your plan for tapering down from 5 mg? I highly recommend my 0.25 mg a week drop. :)

Col 23
06-11-2010, 06:51 AM
I just had to go up again for awhile and am now back at 15mg until the end of the month and we will see after more bloods. After that it will be very slowly. I had losts of joint pain, but I get that anyway, also noted nodules in the legs returned and foot pain when I was tapering. I also became very sleepy.
cheers Col 23

Sangye
06-11-2010, 06:52 AM
When you tried tapering, did you have more joint pain than you do on 15 mg?

elephant
06-11-2010, 07:49 AM
That is what I am going to do once I get to 5 mg taper 0.25 every three weeks? or four?

Sangye
06-11-2010, 07:58 AM
You've been on it for a long time, so just go slow. You can tell each time it's okay to drop it, because everything levels out.

DEE
06-11-2010, 03:48 PM
hi i start to reduce preds today !!!!! moving from 25mg to 22.5 mg a day on trail basis
to see how i go on and contact gp or wg consult if i think im having problems
at least its a small step forward :) DEE x

jola57
06-11-2010, 04:50 PM
Oh yeay we are all tapering, aint life grand? Easy does it everyone. I will half my 1mg, and try 4.5 next month. I realy think I am either in remission or very close to. My ENT visit was great. Right ear almost back to good, left not so good. He thinks it is going to be permanent. But I say never say never. Throat good and nose and sinuses OK too. Just wants me to swish my nostrils since they are dry. Tomorrow I will do my blood test. But I think that beyond high ANCA, all will be good. I will also try to see what the results of my lumbar and foot x-ray was. I guess no news is good news. I still can't walk fast or far because of the pain but I think that this like my feet and ear is permanent. but I can live with that. After I come back from UK I will see if maybe when I taper off from pred, I can stop mtx.

Jack
06-11-2010, 07:00 PM
hi i start to reduce preds today !!!!! moving from 25mg to 22.5 mg a day on trail basis
to see how i go on and contact gp or wg consult if i think im having problems
at least its a small step forward :) DEE x
I think you should manage that OK. It tends to be the last 10 mg that give the most trouble. Good luck!

DEE
06-11-2010, 09:10 PM
thanks Jack i know it does not seem much but i cant get below 20mg without having major problems and it makes up for the fact that he still wont reduce cxt but the good news is white cells nearly normal !!!

Sangye
06-12-2010, 12:12 AM
Dee and Jolanta, what great news!! I hope it goes well for both of you. :)

Brooke
06-12-2010, 01:43 AM
That is great to hear Jolanta! It does seem like many of us are getting to taper the prednisone! Good luck to us all! I'm glad we all know that it needs to be tapered very slowly.

Lightwarrior
06-12-2010, 03:20 PM
I have been at 20mg of pred for about 2 weeks and I have had a lot more energy. I go to 17.25 starting in the morning. if i do okay then I can drop to 15 in 3 weeks. I hope this works.
2

Sangye
06-12-2010, 10:07 PM
Whooya! :)

elephant
06-12-2010, 10:16 PM
Good for you lightwarrior! Glad you feeling better!

Lola
06-14-2010, 10:17 AM
Ooh! So do I, LightWarrior