After effects of prednisone

After 7 weeks of good platelet numbers ranging from 252-315k, my prednisone tapering is done and I haven't taken any for 8 days and I'm wondering if feeling very tired is just one of the after effects of coming off the prednisone or if I should be concerned that my platelets might be dropping. I'm getting 7-8 hours of sleep at night but still feeling rather tired throughout the day and needing naps. My #'s were highest 7 weeks ago and were 252k on 3/5 when I came off the meds altogether. Everything else seems normal no bruising/petchiae. Just feeling really tired the past couple days and when I work out, mostly like stuff yoga/pilates, I end up sore for 2-3 days afterward. Thanks for any input.

Hayley - yes, that is normal during and after the taper. My experience was that I was 'exhausted', not just 'tired', so you are doing pretty good!

I didn't experience tiredness when I tapered off of Prednisone, but I believe that is due to the fact that I tapered off of Prednisone due to the fact that it didn't work for me and had started taking Dexamethaone, another steroid, several months before I fully tapered off of Prednisone.

When Dex, which I have been on for six months now (got to love steroids...not), I take doses for four straight days and then I have 10 days without any doses. Actually, I just started having 17 days without any doses this past cycle. The second day of the not taking any doses (so one full day after the last day of my pulse), I call my crash day. I am so exhausted, even after sleeping 10 hours at night, that I will commonly spend the entire day in bed, sleeping. It is not uncommon for me to sleep 20 of the 24 hours of the crash day. It was so bad that I was taking the day off of work, because I couldn't keep my eyes open to function. Thankfully, I was able to switch the days in which I pulse so my crash day now falls on a Saturday. On a regular day, my body only needs about 6 hours of good sleep at night, and I'm wide awake for the entire day. I've never been the type of person who would sleep until noon on a Saturday.

When I talked to my Hemo about this, he called it withdrawal. It was my body's natural reaction to not having a new dose of the steroid in my system. Perhaps this is what you are experiencing with Prednisone? If it helps, it is something that I fully expect will go away once your body adjusts to not being on steroids anymore.

On a related note, steroids (neither Prednisone or Dex) did not help my ITP much -- I'm in the process of tapering of Dex to be done with it due to a relatively unsuccessful treatment -- but they really affected me in other ways. I experienced a ton of side effects, and my family used to joke that they could tell which days I took Dex and which days I didn't (even if they hadn't memorized my pulse schedule), because I was incredibly hyped up on Dex. I had tons of energy, talked a mile a minute, and couldn't seem to shut my brain off. Actually, when I was taking a higher dose of Dex, I used to have to take sleeping pills in order to be able to sleep on the nights that I was on my pulse. Otherwise, I probably wouldn't have been wide awake for all four days of the pulse.

Anyways, after my very long post, you are not alone with the feeling of tiredness. In fact, through looking around these boards and through my own experience, I believe that ITP does impact the energy levels of a lot of people. Ever since I have been diagnosed, I have definitely noticed a decrease in my energy level. I'm not sure if that is a direct result of the ITP or a result of all the medications I have been taking to treat the ITP. For someone who never took pills for anything (beyond the very occasional Ibuprofen -- not allowed anymore), the massive amount of medication I have been on since my diagnosis seven months ago has been a really hard adjustment -- emotionally and physically.

The big differnece between Prednisone and Decadron is that the Prednisone withdrawal can last weeks or months. Decadon withdrawal is a few days, but is a more severe reaction.

I completely know how you feel, coming off of the steroids. I was on Prednasone for 2 weeks and then was put on Dexamethasone. When I tried to stop them after 4 days, my body shut down. I could hardly walk. I went to my hematologist and they gave me a shot of steroids and started weaning me off of them. I hated these pills. I couldn't sleep, was hot all of the time, and was extrememly irritable. It took like 3 weeks to get off of them; I had to do it very slowly. They did help my platelet count, along with the Rituximab treatment. My platelets have been over 400,000 for over 3 weeks, now. I wish there was some alternative medicine to take, instead of steroids. I don't ever want to us those, again.

Believe me - nobody likes them! You are doing great, Amanda!

I have been on Prednisolone for 10 years roughly (since i was 14) as part of my treatment for my other auto immune conditions. I have been on high doses of 80mg and relatively low doses of 10mg and most of the in between. On high doses i eat like a garbage truck and sleep like 10-12 hrs and i am told i am a bit of a pain in the but on low doses i am relatively 'normal'.

On high doses i would basically be bipolar. One minute i am ecstatically happy then next i am planning my suicide. But as i got older and had more incidents of being on high doses my body and mind began to know what to expect and i feel the fact i knew it was the drugs and not actually me that was thinking like that helped me to cope. That and the new view on life i have in which i have a sunnier view on life helps me deal with the high doses better.

I am not sure if this will help anyone but i understand the problems of steroids but i wouldn't want to be off them as it is very good at maintaining the levels of my other autoimmune conditions.