Trouble Tapering Pred

Okay ... so I've been tapering off the evil pred for what seems like FOREVER. Here's that portion of my history from the old board:

Aug 5 - 37k still on 50mg pred
Aug 27 - 66k now tapering to 40mg pred
Sept. 10 - 107K, tapering to 35mg pred (YAY!)
Oct. 21 - 51K, sick and fighting infection from cat bite (don't ask!) continuing pred taper, at 22.5mg now
Nov. 25, 2009 - 67K, taper at 15mg of pred
Dec. 31, 2009 - 120K, still tapering pred, at 7.5 now

In January, I got to 5MG, stayed there for a bit because the 7.5 to 5 taper was WICKED awful. Finally got up the courage in Feb. to taper to 4MG ... another horrible two weeks. I'd been sitting at 4MG for most of March because I've been really sick and thought why make matters worse by tapering.

Tapered by just a 1/2 a MG Friday of last week, I'm now on 3 1/2 MG and feel completely awful. Like I'm moving through pudding. No energy, muscles ache, still incredibly emotional (when will THAT end lol) and cannot fathom tapering again this Friday. I want off this stuff so bad, but cannot believe how hard these last five MG are.

Ugh! This is just horrible. I work full time (and my co-workers do not know about my illness, I'm a high level manager and it would NOT be a good thing for them to know), my husband works nights, I have two kids under 5. Right now I can barely function. The other thing is, I have no appetite at all, and I know that's not helping the no energy thing. I have to force myself to eat, and have started buying protein drinks just to get something into me. I've lost about 25 pounds, and most of the puffiness in my face so YAY for that ... it's odd when people compliment you on how good you look when inside you are just crumbling.

Please tell me this is normal. I feel like I'm losing it. My counts have been stable - always over 50, last count was 124 last week. When I got that count was when I decided to taper again. I want off this stuff so bad ... but I feel like each time I drop - even a half a MG! - life is just misery for at least two weeks.

Sorry ... just needed to vent. :*(

It's ok to vent.....especially here! We all need that. We can take it!
Why so long to taper off? I did it in 18 days! I was taking 100mg a day. Went to 80 for 3 days then 60 for 3 days and on down until today....I take my last 10 mg! WOOHOO!!!! It wasn't that bad for me. Though tapering off was worse than being on it. I will never...ever take it again. Seeing as how it did nothing for my count, there will be no reason for it!
If your down to 3&1/2mg a day, why not just stop? Did your doctor say it would be ok to?

I've been there. I couldn't get off of it, so I didn't. I tried going down 1 mg every six weeks and by the time I got to 3, I felt like my body was shutting down. I couldn't think, couldn't move, could not function. One day at work it was so bad I just took the 5 mg's and within an hour, I was a new person. I tried three different times, then gave up. I was diagnosed with Lupus at that time, so my Rheumatologist just kept me on it. I now take 10 mg's a day and know I will never get off of it.

I don't know what to tell you. My experience was just as bad.

Leslie, have you tried every other day?

I tapered from 60mgs over 5+ months, dropping 5 mgs a day until I got down to 15mg, then when to 20 every other day for 6 days, then 17.5 every other day for 6 days, etc. Joint pain started when I was at 30mgs, and continued for a couple months after I was off totally...so I gotta wonder if prolonging the taper at this point is helping or hurting. 3 months off pred is when I finally started to feel normal again.

Good luck!!

Here's the thing with me though that I didn't mention. I had been on Prednisone about four times, at high doses, prior to the time when I couldn't get off. I had problems tapering those times too, but not like the last time. That particular time, I had only started at 20 mg's and was on it for about a month. That was when I found it impossible. Why? I don't know. That time should have been easy, lower dose, short period of time. Each time I was able to go right from 5 mg's to zero. It was hard, especially with the typical muscle weakness, fatigue and joint pain. That last time though, I wasn't able to function at all...like my brain shut down and my body locked up. I always attributed it to Lupus, but maybe my adrenals were shot. I'll never know.

Once you start Pred. your system doesn't know it for about 7 days. Then you internal production starts to shut down as you are now getting sufficient cortisone orally. When you taper-off Pred, your system is supposed to get back into production. Sounds like something has prevented your system from re-booting. Are you seeing a Hemo doc? I regularly see my Family Doc (for Coumadin) and my Hemo Doc for the ITP. They don't always agree on a Prednisone regimen.

great count,
hey, you're almost there.

maybe since it didn't do anything for me as far as bringing my counts up, it's not so hard for me to taper off? Maybe I wasn't on it long enough, a little over a month and a half, for it to make that much of a difference? Maybe I have more "withdrawl" to go through!? Hope not!

server wrote:

It's ok to vent.....especially here! We all need that. We can take it!
Why so long to taper off? I did it in 18 days! I was taking 100mg a day. Went to 80 for 3 days then 60 for 3 days and on down until today....I take my last 10 mg! WOOHOO!!!! It wasn't that bad for me. Though tapering off was worse than being on it. I will never...ever take it again. Seeing as how it did nothing for my count, there will be no reason for it!
If your down to 3&1/2mg a day, why not just stop? Did your doctor say it would be ok to?

It is recommended if your on it for longer then i think a week or so that you taper it off slowly as you can go through withdrawal symptoms if u taper it too quickly and the platelets can drop quite dramatically low really quick when u taper fast. I tapered fast so i could start the Nplate and my platelets plummeted from 81 down to 9 when i went to the low doses really fast and thats why u feel like tapering off was worse then being on it because you get hit with the symptons of withdrawl a lot quicker then u would when your just on a stable dose of pred or tapering really slowly. When your on a stable dose, u don't seem to notice them at first cause they come on gradually, so the longer u have been on it and higher doses u have been on means u should taper off really slowly to try to avoid the withdrawal symptoms.

I can relate to this. I find getting off the pred and prefer to do it slowly. I do feel that a slow taper helps my platelets to stay up, but also I just can't stand the side effects. I've noticed that sometimes they're worse than others and I think it must relate to how quickly your adrenals come back.

I've also thought that maybe I'm just prolonging the agony when I do it so slowly, but it really can get painful. I've heard that taking the doses every other day, as Tamar suggested, can help keep the adrenals from getting suppressed, so maybe that's the way to go.

It'll be worth it though, when you do manage to get off of it. Who knows maybe you'll be able to go without treatment!

Lily

Server:

Whether or not you respond to Prednisone doesn't correlate with taper withdrawal. Sometimes, the first time a person is on it, it's not so bad. After that, it gets hareder. It also depends on dosage and how long a person is on it. There are some lucky people that just don't have withdrawal too badly, others have a very hard time.

man im 15 and im on 70mg. it drives me nuts. ive been going crazy cuz i was just diagnosed last week... any tips?

I've been on Prednisone of varying doses since Nov. 08 - so that's a long freaking time. In April of last year, I was put on 50MG and stayed there for a while tho it really didn't seem to help my counts.

I'm still feeling lethargic and miserable, tomorrow marks one week from the 1/2 mg taper. I am going to learn from this and not do that again ... I think next time I'll do the every other day taper and taper just 1/4mg. And I'm not even going to think of tapering again for at least a few weeks.

I really want off this stuff - but this is just unbearable. Sandi, I was thinking of going back to my 4mg for a day to see if I felt better but it seems like I've already been through the worst so why backtrack now. Just trying to get to the weekend ...

As for tips being at 70? Know that everything you're feeling is normal for the high dose of pred you're on - lack of sleep, anxiousness, irritability - and hopefully you'll be able to taper soon too and not be on it for as long as I have and have all these issues.

One thing I did that helped me explain to family and friends what I was going through, and the personality change, was to read them parts of the book "Coping with Prednisone" - the expected side effects from high dose - so that they would be more understanding when I bit their head off or started sobbing.

If you are noticing improvement, try not to go back to a higher dose then. I stuck it out for weeks and never felt better, only got worse, which was why I gave up.

We all know I'm no expert at this, but I gotta agree with Sandi, I surely wouldn't go back to a higher dose.
Today is my 2nd day with no Prednisone at all. I sure am tired. I move kinda slow too. Is this part of it or maybe from the NPlate? I dunno. I just wanna start sleeping "normal" and not feel so slow all the time. But...if that's all I have to deal with, I'll take it I guess.

Perhaps we each react to Pred in different ways. I've been off/on high dose/low does, a couple of times. But never had the taper-off syndrome. When I'm on it, I'm usually in high gear ready for action. I have trouble sleeping and usually wake after about 5 hours. I get the hungry's but I still manage to control my weight. My wife noted some personality changes but nothing dramatic..... other than I talk more than usual.

Anytime I change doses it is with the advice from my Hemo doc..... And that might explain the differences in how the Docs treat the issue. My Doc practices Oncology/Hemotology and her office is a Cancer Treatment Center. As I mentioned previously, my family Doc doesn't always concur with the Hemo Doc..... but they know each other professionally and socially. And remember, the MD's refer to their business as a "Practice". i.e., they practice on us.

I agree with Sandi, don't go back up. What I do is stay at a given level until it's I feel more or less normal (given that I'm taking prednisone) and then I go down again. I've even sat on one dosage for a month or so and then continued down.

Server, I got of prednisone for a few months last fall and I was exhausted for the whole time. Then, just as I was starting to feel a bit more normal, my platelets tanked. :S So I think it's normal to take a long time to recover from the pred.

I'm now back in the same position as Silicon and have tapered down to less than 5. I'm going to try to get off of it again as long as my platelets hold.

Hope yours hold,

Lily

Ianroom,
The first time I took prednisone, I started at 50 mg. I started feeling psychotic. So my doctor had me lower my dose to 40 mg, and I could handle that better emotionally. If you are feeling crazy, you should talk with your parents, and have them call your doctor. Okay? Let us know how it went.

ive been able to cope for the most part. like i have my moments. there was a point where my mom was crying cuz i was so out of controll. we are seeing my hematologist on tues and we are gonna see about tapering

> until I feel more or less normal (given that I'm taking prednisone)

Lily, thanks for the laugh! Love that - normal, given that I'm on pred.

What IS normal? I just do not know anymore.

Today is a little better. Looked at that other half of the pill every day this weekend but did NOT take it.

Forced myself to walk the block at lunch and grabbed soup and salad. Then forced myself to eat it. Having serious trouble with not wanting to eat ... which I'm sure is affecting the crappy energy levels.

- Leslie

Well, this is it about the normal. You get so many strange side effects from the pred that I tend to blame everything on it. And tiredness and low energy are very well known pred taper side effects, so you don't need to look for any other causes there. On the other hand, I'm sure I blame things on the pred that are caused by other things, so it's tricky.

Hope you start to feel better soon,

Lily

Does anyone here get chills after lowering their prednisone dosage? I just went from 15mg to 12.5mg; I feel unbalanced, very tired, and feel cold despite wearing a down-filled jacket while sitting next to a fire!

Could it be related to my platelets dropping 5-10K/day for the past few weeks? (I'm at 32 now and staring IVIG on Wednesday morning.)

starting to taper tomorrow. excited.