Prednisone taper - what are the side effects?

Can everyone share what type of side effects you get when you start to taper off Prednisone?

You really want to know?

Depression, muscle weakness/pain, joint pain, fatigue, a feeling of being disconnected from yourself, mood swings, etc. Those were mine and may not affect you. Some people get lucky and taper easier than others. A lot depends on the starting dose, how long you were on high doses, and how fast or slow you taper.

I guess mine are they same I found them to be the side effects of just being on the Prednisone I didnt really realize tht was from the taper. I guess thats why they seem worse today!! Definetly mood swings and muscle and joint pain!! Good Luck!!

My doctor is having me go down from 90mg on Wednesday I went to 80mg Thursday and Friday and then 70mg Today and Tomorrow and then 60mg Monday and Tuesday, however I get my count done on Monday so we will see if that happens and then I see her on Wednesday.

She is having me see an Endocrinologist which I see on Tuesday!

Wishing everyone good luck and heres to high counts!!!

Thanks all. I haven't really noticed anything different but it is just my first day on the 10 mg. I have been waking up in the morning with that "disconnected" feeling pretty much since I started on the Prednisone. I have also had major mood swings, but I can't be sure that is the Prednisone or hormone related. How long until you feel "normal" again once the Prednisone is done?

The normal feeling will come back eventually, but it totally depends on how long you've been on Prednisone, what your doseage was, etc. I've found that each time is different too. The first time I was ever on Prednisone started off at 40 mg. and tapered off very slowly over a four and a half month period. I have trouble tolerating the steroids if the dose is over 20 mg. My body just does NOT like it at all. Second time I had steroid psychosis, severe depression, and had to get off fast. Amazingly I had little to no side effects after that episode, other than a few mild aches and pains in my joints and limbs. This past time I was on Prednisone, the ER put me on 100 mg. Whew, that was fun, NOT! I did a taper quickly because my Dr. and I both know what happens to me at a high dose. I was only on the steroids for two weeks. My platelets will be checked tomorrow to see if I have stabilized. Keep your fingers crossed because I would like nothing more to do with Prednisone! However, I do respond very quickly and if that's what it takes rather than having a splectomy or try something different, then a low dose is preferable. Good luck to everyone out there on Prednisone right now!

Kathy

Thanks, Kathy. Definitely wishing you good luck on your platelet count!

I was reading about tapering off Prednisone and I don't know if mine is a fast taper or not. 1 week on 40 mg, 2 weeks on 20 mg and now 1 week on 10 mg. It seems most of what I read take it slower than that?

So how about headaches? I have been having dull ones off and on this whole time, but almost seems worse today when I am only on 10 mg?

I was on prednisone for two years - that requires a slow taper! You can usually taper much faster if you are only on it for a week at a higher dose. I remember having headaches, it could be the taper.
Erica

Prednisone can have a cumulative effect, meaning even though you are on a lower dose and tapering off of it slowly, it still is in your system. I can take up to six months to a year for some people to get it out of their systems too. The headaches, body aches and pains, and other side effects are most likely from the Prednisone. I gained about 65 pounds from being on steroids for four and a half months! Yep, I blew up like a balloon. Prednisone also raises my blood pressure and my blood sugars as well as the platelets. It saves my life each and every time I take it, but the side effects make me feel much worse than having the low platelet count. I did end up fighting to lose about half of that 65 pounds but now the other half of that doesn't seem to want to budge. This disease is definitely a journey! Oh one more thing I had to deal with was being super dizzy about two weeks after the first treatment of Prednisone. That was fun, trying to walk the halls at work like that. Everything seemed like it was slanted. I also had cloudy vision in my right eye that my Dr. thinks was from the Prednisone raising the pressure in my eye. It was temporary and did go away after an hour or so, but it was scary.

Kathy

This is my first episode ever of acute ITP. I'm down from starting dose of 60mg to 50mg this week. I don't notice any side effects from weaning yet. However, I have a very annoying side effect of morning tremors. Like low blood sugar. It started a few days ago. It lasts for hours and seems to come on after taking my prednisone in the morning. I shake so bad I sometimes miss my mouth with the Cheerios. I've noticed a little irritability on this drug too. Not much, but my patience seems a little strained at times. Does anybody else have these problems? :blink:

Thanks everyone. It really helps to have you all share what your experiences have been. So, the slow taper is really more for people who have been on higher doses longer. That makes me feel better! I have got to stop worrying so much, as I am sure the stress isn't helping anything!

Luvcritters, I also had the shaking, but mine wasn't just in the morning, it would be at random times all during the day. I also had the irritability. I think most of that ended for me in the last 2 days (well not all the irritability!!).

Dcurtis, I know what you mean about the stress and worry. I have it too. I was told one week ago I have ITP. I submitted to a platelet infusion after being told I would die of brain bleeding if I did not. I don't know where this disease came from, how or why it started, and where it is going. Until last week I'd never heard of ITP. This board and website has been extremely helpful though. I'm grateful to have found it.

Shaking is common on higher doses. I had that too. Chances are it's not due to low blood sugar because Prednisone is known to raise blood sugar. It just wires you up like a good espresso buzz. My thoughts raced, I stuttered and had very strange thoughts. When I wasn't careful, I said whatever I was thinking and really had to work hard to control that. Just controlling the side effects was a full time job. I would get so wired at work (it was fast paced which doesn't help) and the only thing that would help would be to go into the bathroom and cry for a few minutes. It was a tension release of sorts. I couldn't stand noise at all - the phone at work was like a gong in my head. At home, I had three kids and a constantly ringing phone. Too much chaos!

Also, you can't know whether or not your ITP is acute for 6 to 12 months. I know that "acute" usually means "comes on suddenly" in med-ese, but not with ITP. Acute means that a remission occurs and ITP will remit. The opposite is chronic which means that you are still dealing with ITP after a year or so.

Well, I am assuming my platelets are dropping on this dosage, as I woke up with a new petechia spot on my arm this morning. Though, I normally get them when I am in the 30,000 range. I guess we'll see on Friday how they are.

When my platelets drop down to single digits, my hema asks me to up my pred dosage, usually to 30 mg/day. (He used to do 40, but now 30 is the max.) Then he has me taper similar to the way you, DCurtis, are tapering, though sometimes a little more slowly. We are both lucky, it seems, to have hemas who don't get really excited and start us on really big doses.

My tapering symptoms seem to be different from those mentioned here. When I am on bigger doses of pred (15 to 30), my arthritis joint pains are minimal. I feel wired, but generally pretty wonderful as my joints are doing so much better. When I taper, the arthritis begins to make itself felt again as I no longer have that powerful anti-inflammatory working for me.

I'm also starting to taper. My hema/ob have me dropping down 10mg a week over the next 8 weeks.

Will your BP start dropping as you are tapering Prednisone?

Never mind! Yes, low BP is a side effect of tapering off Prednisone. That said, is there anything that we can eat/drink that will raise the BP a slight bit, or anything to prevent this from happening? I was not having the low BP until I bumped the Prednisone to 20 for 2 days and then back down to 10, but the low BP episode has happened yesterday and today and it is not pleasant!

How low is it? I had low BP my entire life until I got older and high blood pressure hit. The only problem I ever had from low blood pressure was feeling a little dizzy when I stood up. I had to learn to do it slower and I was fine.

Sandi, my top number was fine, but my bottom number was at 55. I stopped checking my BP to be honest with you. I have a tendency to become obsessive about it, and it causes too much stress/worry for me, which I am trying to avoid!! I do notice that my old aches and pains (knees, back, etc) are coming slowly back. I didn't realize how much the Prednisone wiped out all my joint pains!

"Blood pressure lower than 120/80 mm Hg is considered normal. Within certain limits, the lower your blood pressure reading is, the better. There is no specific number at which day-to-day blood pressure is considered too low, as long as no symptoms of trouble are present."

www.americanheart.org/presenter.jhtml?identifier=3034848

Ok. Back with yet another question. I am now on 5 mg every other day this week and then I can stop. I started the every other day treatment on Friday, so Friday on, Saturday off, etc. I felt horrible Saturday, tired and achy with a headache, but yesterday and today I notice I am having heart palpitations. Not all the time, just randomly. I have had heart palpitations for years, but I am curious if this is a side effect of the Prednisone, as well? Did anyone else have heart palpitations during their taper?

My hema is a huge fan of doing the every other day pred, but for me, I hated it. It was like tapering every other day. So instead we did the step down, which is still hard, but not as bad as the every other day.

I would guess your heart palps are from the taper. However, make sure they test your B12. Low B12 and/or anemia will give you heart palps.

I even had palpitations when it was time for my next daily dose. If I waited an hour past the time I usually took it, I could tell.

Thank you, Plopper and Sandi. This every other day stuff is worse to me than just being on it daily! I took my last 1/2 pill today, so hopefully all these symptoms will pass now!

Some prefer the alternate day dose and some do not. I don't think I could have tolerated it. My body really reacted to a missing or late dose.

This question is funny, because with any long term use of prednisone side effects will surely arise. When tapering , I would take it as slow as physically possible.