Weaning pred question

[Pete]

Pete,

That's good news. I highly recommend going to Cleveland Clinic, for your Weg's specialist. I have been going there since July 2010 and feel that they are treating my wegs with all the right procedures available.
Jana

I'm going to ask my pulmonologist at OSU for a referral. Who do you see at the Clinic? Psyborg sees Dr. Villa-Forte.

Pete

[Jaha]

I also see Dr. Villa-Forte. She is easy to communicate with and makes sure you understand her instructions.
Jana

[Debbie C]

My dr. is weening me off pred. I was at 10mg and he put me down to 5. I feel like I'm shaking inside. I went to see a kidney dr. today just to make sure everything was o.k. there and to get est. with one. He said I should probably go back up to 10mg again for a couple of days then drop down to 7.5 then 6 then 5. But he said if I can tolerate stay the way I am... I just don't know how long this is gonna go on for. I keep getting headaches and feel crappy. I probably should do what he said instead of what my reumy did

[Debbie C]

well I couldn't take those "WITHDRAWAL" symstems anymore, I had to break one of my pills in half. I thought instead of going back up to 10mg. since its been 4 days ,I'll stay at 7.5 for a few days then try again. My nerves were getting the best of me and I keep getting headaches,so maybe this will help.

[Al]

well I couldn't take those "WITHDRAWAL" symstems anymore, I had to break one of my pills in half. I thought instead of going back up to 10mg. since its been 4 days ,I'll stay at 7.5 for a few days then try again. My nerves were getting the best of me and I keep getting headaches,so maybe this will help.

By way of comparison, Debra, I, too, had trouble going down to 5 mg--more itching, headaches (which I had not had since beginning pred), and fatigue--particularly in the morning. My doc (a nephrologist) bumped me up to 10 mg, and will try a slower taper.

Al

[Sangye]

Debra, I'm glad you didn't stay at 5mg for longer. Those symptoms are good indicators that you tapered too quickly. You'll have to decide for yourself, but usually it's best to go back up to the original dose and stabilize there before tapering again. It usually only means a delay of a few days but is well worth it.

[Dryhill]

Debra, when you feel able to start tapering again try alternating between 7.5mg and 5mg daily or two or three weeks. Hopefully that will allow your body to get used to the lower dosage.

Jim

[Debbie C]

Well I went back up to 7.5 mg ( I really didn't want to go all the back to 10 since I was off it for 4 days ) I've been on this for about 3 or 4 days now,I can't even remember. My mind is shot. I feel the swelling on the inside of my mouth going down and my lips keep tingling and I still feel like I'm shaky but I've been trying to not think about it.HA HA. I go to CC to see the dr. tomorrow so we'll see what he says. He'll probably be pissed at me since I haven't started taking the MTX. We are also under a winter storm watch and supposed to get 3-5 inches of snow,of all days, I'll need to take extra anxiety pills !

[Sangye]

I hate to tell you this, but if you're still not feeling back to normal after these 3-4 days then you're gonna have to go back to 10 mg. I did the same exact thing a couple years ago. I let it go too long and tried increasing the pred dosage just a bit. By the time I couldn't take it anymore it was too late. I had to go all the way back up and stay at that level for 6 months to let my adrenals recover before starting again.

Dr Seo said if I had caught it within 2 or 3 days I would have been okay. I could have increased just to the last dosage and hung out there briefly before tapering some more.

[annekat]

It sort of seems like it would make more sense to just taper more slowly in the first place, like 1mg. at a time, or 2.5mg. at the most, instead of wondering what's going to happen when you jump from 10mg. to 5mg. and then finding out in a negative way. I'm still hanging out at 10mg. and have no idea what kind of taper my doc is going to try. I will argue for a slow taper. But then, the pred doesn't bother me like it does some people, especially at this dose. I do realize the importance to my body of getting off it eventually.