Withdrawals

I am off my steriods since yesterday and was wondering, Can you have withdrawals from them since I was on them for years ?

Did you taper down as you went off of them?

Yes you can have serious bad symptoms when you taper and go off steroids.
Erica

Hi Deedee,

First of all, congratulations on coming off the steroids completely! It's usually the last 5 mg that's the most difficult. But, as your body adjusts to the changes, some withdrawal is almost inevitable and does need to be very gradual to avoid any serious problems. Has your doctor given you any instruction on how to taper safely? I've seen many doctors that recommend skipping a day--one day on, one day off approach at the end. That way your body gradually gets the message that it once again needs to begin making it's own hormone. It takes awhile for the body to reawaken after steroids.

One thing I've found is helpful is to make up a very dilute solution from one of your pills, and to take a dose of it, later in the day after your day on Pred. Then,take 1 or 2 sips of this water on your day off of Pred. This helps to very gradually reduce the Pred, as well as helps lessen any side effects. You can read about it in this thread:
www.pdsa.org/forum/8-natural-treatment-methods/12854-how-to-attenuate-side-effects-to-medications.html

If you have further questions, just ask.
Wishing you success!
April

Hi Dee Dee.
Wow finally off the steroids, how great for you. I felt pretty bad aches and pains when I stopped after I was taking them for ten or eleven months. I really hope this gets better for you, what ammount was you taking when you stopped?

It depends on how you tapered. I would hope it was very slow after years of being on them. If you didn't have problems tapering and were at a very low ending dose, you should be okay.

Congrats on getting off the steroids!!! As long as the dose is tapered you should be fine. Maybe some minor withdrawl symptoms.

Yes I tapered down to 5 and jumped off. Taking Promacta 25 mg every other day. It appears to be working so far We'll see what my counts are in another week. The doctor told me last week that it's like looking at another person's profile. I can't figure out if it's withdrawal or side effects yet. My current count now 375. Before promacta I was developing lots of infections due to the steriods and other medications use. I've been on promacta for a month now and I hope it stays working.

Going from 5 to nothing after years of Prednisone might cause withdrawal. Have you had breaks in there or were you on it the whole time? If you've had breaks, you might be fine.

Dee Dee, my doctor thought because I had been on pred for so long (10 or 11 months) that the end of the taper should be really slow, so I went down 1mg from 5mg every week at the end, so 5, 4, 3, right down to 1mg. He wouldn't let me just stop at 5mg. At the time I thought it was a bit annoying, I just wanted off them but now I think it was probably a good idea.
Great count though 375 wow.

It is interesting for me to read this thread- especially that the last 5 mgs can be really bad or significant because I was thinking of posting a related question myself.

I’ve been on 20-30/ mgs day of prednisone for about 8 years. This past Oct when my platelets bottomed out, I was on 150 mg/day, to no avail. It seemed that I went from being steroid responsive to nonresponsive. In Nov I got a splenectomy – my platelets shot up to 600 and then after 2 weeks settled to the lower 300 where they have been stably since. Around that time I start tapering, stepwise, down to 20 mgs where I step 2.5 mg down a week until 10 mgs and then 1 mg down a week. At the moment I am at 8 mgs.

So here’s my question. During 8 years of maintaining my platelets at 20-60 with 20-30 mgs of pred, I never had the symptoms of fatigue one hears of. But these days I am exhausted. During the last weeks of 150 pred the drug caused a crippling insomnia….but I have been able to sleep through the night for a good month now. But unless I get 12 hours of sleep, I am wiped out during the day. I was thinking that at 8 mgs, such a small amount, I should not be feeling wiped out from the taper, but I suppose that is naïve?

I’m getting pretty tired of being tired.

Yes I think the fatigue could very well be related to tapering. It's not the small amount per se, it's the fact that you are coming down from a much higher amount. Many here on the board prefer to taper much more slowly. If you can tolerate the fatigue, it will be over with sooner if you keep up the tapering pace.
Erica

When the dose gets down to less cortisol than your body produces naturally (7.5 mg's), the taper can become difficult as the adrenals start producing on their own. Yes, the lower doses are worse and you should take that part slow if you've been on steroids for a long time.

Thanks for all the reply's. I was on Pred over 2 years stright I taper from 100 to 10 and stayed on 10 for 6 months then 5 and 10 every other day, then once I started Promacta and was taper to 5 then 5 every other day for about a week then off. I have been on all treatments including N-plate and my count went to high. I was taken off that. So I'm hoping for this to work. My insurance company first gave me a hard time because the price here is 1080.00 Cheaper then N-Plate.

Mark I know how you feel about tried of being tried. It's so hard this illness we have, one day feeling ok to the next day is any one's quess. I take the good days and run like hell with it. It's hard coming off the pred, I was off of it before and went back on it because nothing else worked. The Pred also gave me infections and other complcations, I quess I'll take the withdrawal and hope for the best.
I hope you the best also and keep a postive out look because someone else is worst off then we with ITP.

For me, the taper was far worse than being on the drug. Go slow.

My taper was 60, 40, 20, 10, 5, 2.5. Was not on the higher doses for long. The lower doses went for a few weeks.

I was wondering how long do withdrawals last ? My body hurts all over from joints to muscles, it hard for me to get moving, My blood sugars are running high, alot higher then they were on predisone. Could this be the promacta or something else. I have another profile on Monday and that should show something ( I'm hoping ). Did anyone who is taking promacta have any bad side effects off? I had less pain on predisone.

It took me three months of no prednisone to stop having the symptoms. I was on it for two years.
Erica

DeeDee, sorry you are still feeling so bad, hopefully the tests will show if there is a problem.

It took you HOW long ???? I've been on pred. since 07. Did you have the muscle and joint pain also ?? My blood sugar are also high since I started the promacta. We'll see what the profile shows tomorrow. So how do you feel now since you have been off predisone ?

Dee Dee - if you've been on Prednisone non-stop since 2007, you might not be able to get off that easily. Sometimes the adrenals shut down and do not begin to produce of cortisol on their own.

Yes, it can take months to feel normal again assuming the adrenals pick up. Some people have to taper by 1 mg. to get off successfully.

It's been several years off prednisone and I don't have any of the related symptoms any more. The muscle pains are gone. At the time it was scary because I wasn't sure it was from prednisone withdrawal, I thought maybe it was a new forever symptom. I couldn't turn my head much and my thigh muscles hurt a lot and were very weak.

I travel for my job and I take prednisone with me at all times in case I suddenly have symptoms of severe low platelets - but I've never had to use it.
Erica

eklein, those are the symptoms I have, muscle pain and can't turn my head very well. And feeling and thinking like I have something new developing. Got my blood work back and counts were 199 and looking good. Promacta every other day. Now some days are better then others on the pain but it's still there. They didn't stay anything about my sugar level neither so one step at a time. Hope all is good with you and the rest of the group. Thank-you everyone for the support and good feed back. Talk to all soon:)

If you're only on Promacta and have a count of 199 I'd say that's too high. The aim is for not much higher than 50. The idea is that as all the platelets are new and large and sticky, too many may cause clotting.

Before I started the Promacta my counts went down to 30,000, that's when they started on the Promacta and they shot up in to the 300's now there dropping. Last week down to 199 and this week I feel tried and still have pain in my joint's and muscles. I just found my gums bleeding after I brushed my teeth. And I know that's sign for me that the platelets are going down again saw some brusing also but not bad. I started back to college after losing my job 4 years ago and that's ajustment after being out of college for 30 years lolo. So maybe "stress" is playing a small part in there too. But feels good doing something positive and rewarding again. "This to shall pass" if the platelets are running low again. I'm known to dive really quick with ITP, but knowing what my body is tellin me helps me to get somewhat a head of the problem that's coming.