Not Responding to Prednisone

I have now been on Prednisone for about a month and my numbers are not moving. They are in the 30's. My doctor called me today and my count is down from 39 to 31. I am seeing him Friday and he wants me to stay on Prednisone for awhile longer as he thinks I maybe somebody who takes awhile for it to work....He also said we can discuss other options Friday. What is typically the next step if Prednisone doesn't work?

Barb my hematologist would tell me that my count had not gone down, that 39 & 31 are the same.

Personally, I detest prednisone and would want off of it if it were not working!

I don't know if there is a certain step after prednisone - have you clicked on the "Treatments" tab at the top of the page and researched all of them to see if there is one you would like to try or not like to try?

Are you having symptoms now?


Here's the link for the Treatments - you are new to this right? The best thing to do is educate yourself - you need to be able to go to your appointments armed with knowledge.
www.pdsa.org/treatments.html

True about the numbers. I was just hoping it was going up as in responding. I have looked at a few options, but the side effects sound horrible! I am not bad on Prednisone. Some achiness for awhile and heart palpitations, but they have subsided. It occured after dropping from 60 to 50 to 40. I don't have the weight gain or hunger and I sleep well.
I will see what he thinks is next. Maybe NPlate from what I read, but this is all new to me.

Barb, were you able to get the procedure done while your counts were up? If so, you might consider tapering slowly off prednisone and then not treating at all unless your platelets drop to where you start having bleeding symptoms. Living with counts above thirty is usually uneventful; for some, 20, or even lower, is okay.

Did the prednisone quit working when you began tapering, or did it not work at all?

Yes, I was at 39 and had it done. No bleeding issues at all. Thank you. The only symptoms I have are deep colored bruises if I whack myself. Nothing spontaneous. I had one blood blister in my mouth, but I think I bit myself! lol! I am fine with staying in the thirties. I guess you can say I had no response at all to the Prednisone, unless it is what is keeping me above 30, because I plummeted from up near 100 down there pretty quick. Between that and the procedure, that is why my doctor treated. I have a feeling he thinks it is keeping me in the safe zone, but I would like to taper and see if it falls. I am just afraid if it does, will it work again to get me above 30. I am kinda freaking at 31. I know people do well with much lower numbers, but I am nervous about all of this....
I looked at other options. My insurance covers Promacta and NPlate. Not Ritubimax. May be spelling that wrong. And not IVIG unless I go below 20.

That seems unusual, insurance paying for Nplate and Promacta but not Rituxan (rituximab). My wife, Ellen, had Rituxan, and has had a partial remission for over two years, with platelets mostly in the 50s and 60s, but her latest count was 24k. She will treat only if the symptoms get bad, or if she needs surgery. The more we read, the more we worry about side effects, and the less we worry about low platelet counts.

Very unusual. Was just changed as of 10/1/16.

tuftshealthplan.com/documents/providers/guidelines/pharmacy-medical-necessity-guidelines/rituxan

Honestly, maintaining a count of 30k while on 30 mg's of Prednisone isn't worth it. You should have had a much better response than that. It's not feasible to stay on that dose indefinitely to see what it 'might' do. It should have already done it.

There are a few next steps that you can discuss with your doctor. Imuran, CellCept, Rituxan, N-Plate, Promacta, Win-Rho and Decadron. None of them are without side effects or risks of course, but they are options nevertheless.

Sandi, I agree. I am still on 40mg. at this point, down from 60. Some of the drugs mentioned are not covered by my insurance or only if I drop below 20. I will check out the rest.

If prednisone failed, would it make sense to switch to decadron?

Oh 60 mg's? I'd want a better response than that.

I don't know if Decadron would be a good next step right after Prednisone. Lots of steroids all at once and Decadron is really hard on the body. You couldn't do both at the same time.