Prednisone withdrawal

[Debbie C]

As you all know I have been saying I was going to start weaning of the 5 mg of pred. ( since my dr. said it would be o.k. ) Well Sat., I took 4 1/2 mg. and ended up having a horrible headache,yesterday I did the same but by mid after noon my head was killing me,my ears were ringing so loud,body aches all over and I was freezing.I couldn't take it so today I upped it to 5 1/2mg. But I still feel bad and am freezing. I've had sweats on ,with a robe over that and covered with an afgan drinking hot tea in front of a space heater !!!!!!!!!!! I called my dr. at Cleveland and he said I was having withdrawal systems and to go up to 7 mg. until I felt better than back down to 5. I now wondering if I should just "man" up stay at 4 1/2 until this passes otherwise I'll never give off the crap

[windchime]

I'm having some of the same symptoms trying to taper. I'm trying to tough it , but I'm not sure that is wise because of the adrenals. On the other hand I don't want to go back up to 20 mg when I'm down to 10 and have been for several weeks. Still having the side effects though. I feel your pain. Good luck.

[annekat]

Wow, Debra, it is amazing to me that 1/2mg. could make that much difference, but I certainly believe it, having read of other cases like that on here. As to whether you should "man up", I don't know.... I guess I'd follow your doc's advice, especially if he/she is at Cleveland, but I hope you can get back down to the 5mg. soon. Then I suppose the next time you try to taper from there, you might have to start with 4.75mg!

[pberggren1]

Oh crap.....that sure sucks hun. Um, could be withdrawl. Some people have a very hard time tapering off. How long have you been on pred? How long at 5mg? This could also be a fluke and you could have an infection somewhere? What were your recent labs like? How long ago? I would go for labs tomorrow to see what they are like. I think I would also take your doc's advice and go to 7mg for a bit.

[pberggren1]

I remember Sangye switching to HC. I think she was able to get off that as well. Maybe you need to see and Endo doc like she did.

[annekat]

I just had to go back to 20mg. for at least a couple of weeks, after being at 7mg., because I'm apparently having a small flare. It doesn't feel much like a flare to me, it feels like sinus pressure from seasonal allergies, complete with tinnitus and vertigo, which can happen with WG, too, but I'm not getting any joint pains, rashes, or anything like that... maybe a few mild "chills" kind of feelings, that's about it. So I'm kind of arguing with my doc about the allergies thing, but he feels the rise in inflammation is enough that it is WG activity. To me, could be some of both. I see ENT on Monday and will see what he has to say... I think he's more open to talking about allergies and might prescribe me something for those instead of just letting them be supposedly treated by the pred and MTX that I'm on. Sorry if I'm straying off topic, but my doc thought the taper I was doing on the pred caused the rise in inflammation.

[pberggren1]

What are your numbers at Anne?

I went back on pred on Thursday at 40mg.....took my last dose today, it was driving me nuts...literally. I could not take the fast thinking anymore. And pred wipes me out now. It used to give me wings like Red Bull but now I just crash hard mid day. Got a lung infection again so back on Azithromycin for a week to see if that clears it up. I did have a mini flare in March but got a dose of RTX. I think it was enough to put it down again.

[annekat]

What are your numbers at Anne?

I went back on pred on Thursday at 40mg.....took my last dose today, it was driving me nuts...literally. I could not take the fast thinking anymore. And pred wipes me out now. It used to give me wings like Red Bull but now I just crash hard mid day. Got a lung infection again so back on Azithromycin for a week to see if that clears it up. I did have a mini flare in March but got a dose of RTX. I think it was enough to put it down again.

The only number I got was inflammation is 64, up from 35, I guess that would be the SED rate, no? I get those things mixed up and did not get a copy. So I guess that sounds like a pretty big jump, but I don't feel that bad. Just don't like the occasional dizziness and worrying about getting vertigo. I haven't minded the 20mg. pred., though I did feel a little hopped up the first day or two. I don't know how I'd handle 40mg. I know what you mean, any given dose of pred gives more negative effects than it used to. Will tell more after my ENT appt. on Monday.

[pberggren1]

Sounds more like an ear infection Anne with the increased ESR and dizzy spells. I always check my ESR, CRP, WBC and PR3 at least monthly. When I feel like crap I go check it right away and then weekly until I feel better again.

[Debbie C]

Phil, what do you mean your last dose of pred was today.Are u going from 40 to 0 ? What is HC ? I just had all my labs done last week and everything was good except my lipid panel.chlorestoral high but my sed rate was at 11. Here it goes from 0-20. So Anne if yours was 64,that's high,unless yr lab measures it differently. I never thought 1/2 mg. would make such a difference but I have felt like crap for 2 days. I don't know what I will do tommorrow. Cindy ,I sure don't think I could do this for a several weeks like you,are u sure u are not having a flare?
Good luck at yr ent appt. on Monday,Anne !