Prednisone dosage too high?

Hello!

So, my doctor prescribed me 60mg of Prednisone to be taken every day. However, my platelet count is 38,000 right now. She thinks that since my CBCs have been showing a downward trend (from 75,000 to 43,000 to 38,000), I should begin treatment immediately. I was diagnosed with ITP in 2007 (10,000 count when I was first diagnosed) and went into remission in 2009 (with around 100-120,000 count). It wasn't until a few months ago that a random CBC that was still up as a standing order revealed that my platelets were in the 30,000s. I have my hesitations about starting treatment now, since I know Prednisone can have some pretty nasty side effects and I just started working in a fairly important position. I used Win Ro last time, which worked well for a few years and didn't give me any side effects, but my doctor is really pushing for Prednisone or Rituxan. I don't think I'll have time to do Rituxan, since I work 9-5 on weekdays and the treatment is 4-6 hours once a week for a month. I just wonder if anyone here would have any insight or stories you could tell to help me figure out how to do the right thing.

Also: I have a CBC on Sunday and a doctor's appointment on Monday, where she'll tell me more about the treatment plan, based on my results.

Hi Violet, i also im new on all this ITP , but i still taking Prednisone and is not fun it all i had all the side effects , buffalo hump,weigh gain,moon facies and really weak , i was taking Prednisone 80 ml per week then 60ml then 40 then 30 then 20,then 10 the 10 every other day for a week now im taking 7.25ml every other week and im still not feeling like me , i wish you good luck and take care.

Welcome Violet.
For most Prednisone only works as long as you are on the higher doses and long term use has nasty side affects. I had two rounds of Rituxan treatments. Had 16 months of remission with the first round and almost 3 years with the second round. I work nights Sun-Thr and scheduled my treatments on Fridays. This worked well. I assume you work Mon-Fri? You could see if the treatments can be scheduled on a Sat. It would be tough to ask for time off being you just started a new posisition. See what your CBC is and go from there. If you are feeling fine with counts in the 30's you may not need to treat. That is up to you.
Good Luck!!

violetchild, it should be your decision at what level you treat at. Your doctor should discuss it with you and take into consideration your thoughts. To leave it a while longer to see what happens to your count is a very valid opinion and I'd go along with it myself. I would wait to see if the count is going to drop all the way down or not. Treatment choice is also yours to make with the guidance of your doctor. If you don't feel your doctor is listening to you then you should maybe consider seeing someone else. It's important to have a good relationship with your doctor.

Prednisone does sometimes push people into remission. My count kept up for 6 weeks after stopping it and then crashed. The doctor was disappointed but we then moved on to other things. You could try Dexamethasone instead. It's another steroid that is taken at a high dose for just 4 days at a time, once a month for however many you like. That can also push people into remission.

Odd - when I tried to see her profile it said it no longer exists or is no longer available.

Sometimes if you can see where a person is from that may explain why a treatment.

Hmmm... I'm not sure why my profile isn't visible, but I don't really think it has much to do with anything... I'm from California, if that helps at all?

Hi violetchild - it still tells me there's no profile for you.

I was curious because when I lived overseas the hematologist in the first country was wonderful and didn't panic and we worked together more or less [at that time it was prednisone or splenectomy & he knew I wouldn't remove my spleen] - the hematologist in the 2nd country liked to panic, my count would drop a bit and she was telling me I needed a splenectomy and up the pred and "oh my what are we going to do with you".

Back in the States my count tanked due to a tetanus booster, as soon as my hematologist picked up her prescription pad I told her I wouldn't take prednisone - my son was getting married in a couple months and I was not going to look like the Pillsbury Doughboy in photos! Had Win-Rho and have been in a little remission ever since [not normal counts but good ones].

What do you want to do with/about/for treatment?

I think I would discuss the Win-Rho option since it worked so well for you the last time. They have changed the protocol though and most doctors take precautions and keep the patient for 4 to 6 hours. Not all of them got the news so they may not do that.

If Win-Rho doesn't work, you can always do Prednisone or Rituxan.

Hi violetchild,

I've been on prednisone for about a month now (a very high dosage, between 50-80mg per day) and I can tell you it is not fun. I've gained about 10 pounds and have a very swollen face a long with the worst acne I've had in my life. Not to mention fits of depression. If you can avoid it, I suggest you try, although it has been keeping my counts decently high (the lowest I've been since being on it was 74k; when I was diagnosed I was only at 1k). Good luck with your treatment.

Thank you guys for all the responses! I think I'm going to see if there's any way I can try the Rituxan or Win Rho perhaps on the weekends, since I didn't really experience any side effects from the Win Rho last time. It sounds like the Prednisone is more trouble than it's worth for what my levels are right now.

Where in California are you from? Some areas have pretty good support groups.

Karenr, I'm from the Sacramento area but will be moving to the bay area for school in a few weeks. I ended up going on prednisone for a month or so, with good results. However, my platelet count started dropping after two weeks of tapering off of it. I'm now at 42,000 again