Prednisone Taper Side Effects

Two weeks ago I tapered from 60 mgs of Prednisone to 50. The very first day I had immediate side effects. My face was flushed, I felt dizzy, my entire body ached. Before that, I had been covered in bruises for the past week and didn't feel any pain until the day I tapered. Suddenly everything ached, like I had the worst flu of my life. This lasted for a little over 2 days, then I was normal.
I had a blood test today and my platelets are 183. They were 267 two weeks ago, but they're still okay. Tomorrow I taper to 40 mgs. I was telling the nurse about the experience I had tapering the last time and she said she never heard of anyone having side effects while tapering. I find this unusual, because I have read a lot about this online and many people have experienced side effects.
Is it unusual to experience side effects? To me it seems perfectly logical that you would experience some. The Prednisone is producing cortisol for your body, so if you reduce the dosage then your body is missing some for a while until it makes up for it. I'm starting to lose confidence in this nurse. I don't think she knows what she's talking about. Thankfully I have a reputable hematologist who I will be seeing in two weeks.

Kim:

I was told the exact same thing by my doctor's office. They'd NEVER heard of anyone having problems with the taper. Huh? There have been books written about it.

Yes, those are normal withdrawal symptoms for some people.

Thanks Sandi,
This nurse told me to call her if I have any side effects with my next taper, but I think she's the last one I'll be talking to about anything. When I mentioned to her that I had read online about other people's experiences she told me not to believe everything I read. Huh? I'm pretty sure that people going through this would have more knowledge than she does.
The good thing is that I'm tapering on Fridays, so I have the weekend to recover.

those nurses don't have a clue do they?! For me tapering was so much worse than being on it! See, I think that's why I'm kinda hesitant to share stuff with the nurses cuz most of the time they don't even seem interested and they surely don't write it down! My nurses don't seem to be to bad about it, at least they listen and say "hmmmm" and even sometimes have suggestions but most of the time I feel like I'm just talking to the wind!

I don't think we need to bad-mouth nurses. Actually what the nurse told Kim is correct - you shouldn't believe everything you read.

I really didn't have any side effects from the taper that I can recall - of course I did it so darn slow so that could be the reason.

My doctor told me not to believe everything I read too. I consider the source when making that decision.

Personally, I don't automatically believe anyone...Internet, nurses, doctors....I research on my own and base my conclusion on that.

I'm sorry, I didn't mean to offend anyone. I personally like my nurses. I trust them and tell them that all the time. I also am not likely to believe everythingI read but I do like to give the benefit of the doubt and trust people when they say something.

No you didn't offend. Personally I think nurses sometimes know more than doctors

Oh but I don't know if you should trust all people when they say something - there was someone who came to the old board who had quite the cure for ITP, it was drinking something you wouldn't really drink. No way did I believe that person!

my husband almost got sucked into something like that. This had this drink that would cure ALL that ails you. Funny (or not) thing is that the guy died about 2 years after he started taking it! :blink:

Hi there, I think everyone reacts differently to different things. I had awful side effects from tapering, i had to lie down on the sofa most of the day of the taper and half of the following. I was like a druggy cold turkeying every muscle had gone to jelly and i would just constantly shake during this time. I did find that tapering slower helped i.e instead of tapering from 10mg week i done 5mg every week or every other week. Good luck but i would let the nurse know what the effects are so she can not dismiss them with the other patients, it also adds to her knowledge.
Julia

I went from 50 mgs to 40 last Friday. I was all prepared mentally for any side effects. I felt just slightly light-headed for most of the day, but that was it! I actually felt more energetic than ever. I worked for 10 hours, then came home and worked for 3 hours on my fence. I was just bursting with energy! I wasn't expecting that. Just when I think I have everything figured out the opposite happens. The strange thing is that I should have gotten my period last Wednesday. I felt it coming, and a little bit of pinkish spotting came out for 3 days, but nothing red and then it completely disappeared. That was totally strange! Has this ever happened to anybody?

The only time that happened to me.. the period pain but no period arriving, I was pregnant!!

Prednisone can make your periods stop for a while, or become irregular. It's a listed side effect.

Hi Kim,

Yeah, your side affect appear to be similar to the one I went through.

Here is a list of the ones I recall.
1. Pre-metapausal symptoms (including hot flashes, sweating, blushing)
2. I took pred at around 7 am. But I noticed that between 11 - 3 my head would start spinning, as if my brain was on a merry go round. Then it cleared in the evening and I would wake up feeling normal.
3. At a high dose 80 mg, I became an insomniac and had endless bounds of energy.
4. food tasted like carboard, no matter what I ate I lost the sense of taste. (don't worry it comes back).
5. in the same food topic, I couldn't stop thinking about food almost as if the self-control portion of my brain just went away and my stomach became and endless pit.
6. you also have your low days, when the smallest house chore seems like a whole lot and you really can't muster up the energy to get off the couch.
7. depression.
8. water retention combined with the head spinning, I swore my hands felt like Mickey Mouse hands. My eyes also felt that they were bulging.
9. portions of my hair turned gray overnight. honestly I don't know if this was part of my genes and natural process or if it was part of pre-metapausal.
10. during the 11 months I was on pred I had a period for a week every month, but in the past if I over excersie or donate blood my period goes away completely.
11. at a low dose, while tapering I had body aches and pains.

Hope these help and good luck with your taper.

This is all so new to me. I was instructed to take 60MG for two weeks prior to having a medical procedure done they wanted my # up to 90k-100k. ( I went from 51 to 88k with in 10 days but then down to 77k on day 13). Hemo told me I could stop taking it after the two weeks. He said I was not on it long enough to have problems ..... WRONG! I was about out of my mind by day 3 without it -- I had uncontrolled body shakes, I could not think, I was in mood swing madness. I was then instructed to start back with 20mg for 3 days then to 10 for 3 days, going from 20 to 10 was almost as bad, my heart was beating so hard at times I though it would come out of my chest, headaches, hot flash, I am so sore to the touch on most of my body, every lymph in my body is in hyper activity right now and the list just goes on. Yesterday was my last dose of 10. will see what the next few days bring.
I have only been dx with ITP for just over a year avg # is 49K. I have never felt like such a complainer as I have the last 3 weeks of my life.
Dr has only pushed WhinRo & he is not happy with the choice I have made not to treat. I have already started to lose faith in medical field.
I agree EVERYONE will react different to different treatment and have different reactions to everything. But how can the medical field be so uneducationed on some of the reactions???

I had many awful side effects from the drug and the taper, but one that was not so bad is I was able to drink more when I was taking pred. Now for me, 'more' is the ability to have two whole drinks without getting sick - but I liked it.

One other that was ok is that even when I couldn't sleep that much, I didn't feel exhausted the next day. I was able to function on less sleep.
Erica

The taper is the worst part. You feel like someone chewed you up and spit you out into the gutter.

Don't be in a hurry. Go slowly.

Neddie:

It's nearly impossible to understand the side effects unless you've gone through it. I think that is why a lot of doctor's are a bit clueless about it. You can read all you want, but unless you experience it, they are just words.

I have just three more 5mg pills to take and then I am off of the Prednisone. For me, it went like this:

(FYI - I was diagnosed with a platelet count of just 5... Stayed in the hospital for a week until I hit 47. Then....

60mg every day (first 2 weeks): Felt pretty anxious in the evening. Very productive and focused during the day (I actually loved it). Platelets at around 292 I was scared to work out the first two weeks. Then I started running and lifting again, and focusing on my diet.

40mg every day (two more weeks): No side effects or symptoms. Platelets at 197

30 mg every day (two more weeks): No side effects or symptoms Platelets at 184

20 mg every day (10 days): No side effects or symptoms Platelets at 239 (an unexpected increase)

15 mg every day (10 days): No side effects or symptoms. Platelets at 300 (another odd increase)

15mg every other day (10 days): No side effects or symptoms. Platelets down to 257

10mg every other day (10 days): No side effects or symptoms. Platelets down to 209 (my most recent count).

My hemo just got back from vacation and had no idea that I was tapering (the on-call doc gave me those instructions). But he was very happy with how things were going and then just said, "take 5mg every other day for two weeks and then stop". What's next after that, I have no idea.

But nevertheless, I think I averted symptoms and side effects by staying healthy with my diet and exerting myself with strong exercise every day (about 1-3 hours of working out). I think that getting a good sweat going, keeps your adrenal glands active, despite being on Prednisone. So they never truly shut off. That's my theory. I am yet to ask a doc about this but I am friends with a bunch of nurses, including one who is very familiar with the drug who agree that it makes sense.

I got a moon face a couple times after eating too much sodium on the preceding days! So I drank like a gallon of water within a matter of hours and went for a hard run and it disappeared instantly both times. FYI.

So I think it's possible to avoid the side effects: uber healthy diet and intense exercise. I read so many horror stories online, I was pretty determined to test my own personal theory. Maybe I am right, maybe I am wrong. Either way, you are doing yourself some good by eating well and exercising, so it definitely doesn't hurt to try!

Ive tapered off the pred 3 seperate occasions. The first taper was the easiest. The side effects that most people told me about I didnt notice. Each time Ive tapered its become harder and harder and the side effects are more intense. I was able to taper 10mg a week and feel almost nothing. This most recent time even dropping 5 mg every 2 weeks was tough. My joints hurt so much I can barley walk. I can really feel the joint pain along with every muscle in my body hurting. My periods well I havent really had one since December. My hair started to fall out but IM not sure if its from the pred or the other meds Im on, but it always has in the past and it does grow back. I know that dropping the pred weight is the hardest and that when Im on it I have almost no idea when Im full. Once I got down to 10mg that Im full feeling came back and I can stop myslef from eating more then I need. If your not expierencing any side effects then keep going. I have found the slower the taper the easier it is on my body.

Mark:

The moon face is caused by a redistribution of facial fat. Running and sweating won't make that go away in a few hours. Eating sodium isn't the main cause of it either.

My first taper went fairly well too. Each time after that got worse. Believe me, my life was very busy and I was very distracted from thinking about myself. I didn't run as in exercise, but I did run all day at my job and raising kids when I got home. Regardless, the side effects were horrid. Weight gain and moon face were not my main problems. I'm happy you were able to avoid the side effects - some people do. But for those of us that did have them, it wasn't a personal failure on our part because we didn't exercise a lot.

You might be right, Sandi and I'm not suggesting that experiencing side effects represents a personal failure of any kind. I took the last of my prednisone yesterday. If for some reason I have to get back on it, I will be bracing myself just like I did when I started the first time. But I will never give up on keeping a healthy lifestyle. We all need it and I'll continue to be an advocate for that.

Most of all, it doesn't hurt to try and we all need exercise and a healthy diet, ITP or not. So why not use it as an opportunity to make some healthy lifestyle changes? For me, it's the only thing that kept me optimistic. Because online there's very little optimism available. The internet discouraged me. Running and being healthy kept me positive.

That's the whole point I'm trying to make.

Oh no - I would not discourage you from having a healthy lifestyle! By all means, keep going! I didn't have time for all that exercise with a full time job and three kids. Ha - still don't! I have a full time job and after work, I have been really busy with photo jobs.

Don't brace yourself for the worst; it may not happen. You are one of the lucky ones that escaped without Pred Head. I got a bit defensive because you reminded me of someone that came here years ago and said she cured herself with "positive thinking". I'm sure that thinking positively helps, but if that could cure people from illnesses, I think I'd have been fine. She made the rest of us feel like we were not as mentally superior as she was. If I could have avoided the side effects, I would have tried. I couldn't control the shaking, the stuttering, inability to think, etc. Heck, I have that going on all day at work even without being on Prednisone! Too much stress.

I also have question.. I taking 60mg prednisone for a month then my hema taper me to 40mg for a week then 20mg this week, Am I tapering too quickly?

And also, if the side effects of prednisone(acne,moon face, etc,..)will also subside while tapering?

You'll know you're tapering too quickly if 1) your counts drop and 2) you begin to have withdrawal symptoms. Those can include joint pain, muscle pain, depression, extreme fatigue, etc.

Some side effects will subside, such as the weight gain and moon face, but it will take time.

thanks sandi for the input..

One more thing,is taking prednisone for a little over a month is considered as "prolonged use" or short-term prednisone use? how exactly it measured if longterm or short-term?

It is exactly why they do taper prednisolone and not just stop them abrupt. some of us experience some of the symptoms. Like you on Boxing Day I had a drop of 7 then went down to 3 and at the last count 400. I a getting various side effect issues, slight puffness in the face, and am convinced had a mini platetlet drop tuesday night but recovered itself per se - (another side effect of prednisolone) An am tired this week. Not the sleepy tired but a drained kind of tired but okay once am occupied enough...
So why the nurse/office has to say no one has reported that - when it is part of the reason why prednisolone are tapered... is just them not thinking about what they are saying. Also no one has reported such events because whenver anyone does report.... they get told, "no one has reported that" I strongly suspect and things don't getting written down... sadly

I'd say a month is short term. Very few people are on it for just a month for ITP.

When do you respond to the tapering side effects and when do you 'ignore' them so to speak.

In the patient information leaflet I did read that Prednisolone can bring up old symptoms. How old? I had meningitis Dec 1994 and at times I feel the odd aches. 1998 I had septic shock (stage worse than septicemia) and feel sure that I get feelings of that too at times. Meningitis was a complete doddle compared to septic shock though wouldn't wish either to happen again at all.... Should I be ringing my heamatology department and say something or do I just make a mental note per se...? Each 'ache' don't last very long at all and doesn't stop me doing anything etc... just there and being ultra sensitive to it because of having those two serious illness... I do not know if am being over reactive and ignore or should I be saying something?