Nothing seems to works

Well I went throught the withdrawals of Predisone just to have to go back on it again. Went on Promacta and slowing was weened of the Predisone. About a month after I was sailing on Promacta pretty good and all in one week I went from 68 to 18. Increase Promacta and still nothing. Added predisone 20 mg flew to 318 Back off the predisone from 20 to 10 to 5 and dove from 318 last Monday and this Monday to 4. Increased the predisone to 10 and 50 mg of Promacta all over again. Getting very frustrated with this treatment. I just wonder if I should not take the Promacta and just be on Predisone since I react to the Predisone???? Also having ocurring infections. The infections do not really go away. My family doctor just gives me the same old antibactics that seem not to clear it up. Has anyone ever gone through this with Promacta? What other treatment can I do with out repeating the old ones again. Any new med's out there?

Frustrated in Michgan:unsure:

perhaps a second opinion would be good. Have you seen a Haemotologist or are you being treated by your GP? I have no experience with the Promacta only the prednisone which also worked for me.
You must feel like a yo yo with all the up and down, not to mention being a pin cushion. Good luck

It appears that you are on 50mg dosage of Promacta now? Up from a 25mg dosage? Is that correct?
Have you tried the maximum 75mg dosage of Promacta?

50mg initially did little for me. Could not get above 13k-14k. Increasing the dose to the 75mg maximum brought the count up slowly over 2-3 weeks. After a year on 75mg/day, I was able to cut back to 50mg and stay stable in the 50k range. No Prednisone was involved.

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Yes I started out with 25mg in Dec and then increased to 50 a couple of months ago. It seem to be the number but soon dropped. So then I was put on Predisone and Promacta. I was weening of the predisone. Got down to 5mg of predisone and bottom out again. From one week I went from 318 to 4 so back up on predisone to 10. And CBC and profile twice a week. I just wish I could level off somewhere. Infections are coming alot more. Things are really changing fast. One day feeling good and the next bottom out. Hopefully things will look better soon. I never had my platelets drop so fast like this before.

Hi DeeDee- I'm also on Promacta and Prednisone. What works for me is the super-sloooowww taper off Prednisone.
I've noticed that my counts will crash when tapering by even 5mg.

I started back on prednisone at 10 mg in Jan. 2012. Now in April I am at 7.5mg- that is slow! But I've learned when I taper very slowly like that, the counts stay fairly steady, like my body is not noticing. Everyone is different though.

Right now I'm taking 25mg Promacta with 7.5 prednisone. My goal is to have counts around 30K. Higher would be nice but I'm not willing right now to increase the dosages. 30K is something I'm comfortable with. I may have to increase Promacta if I want to completely get off of prednisone, but I'm not thinking that far ahead.

Recent counts have been 32K 34K 32K 29K. I haven't had infections with Promacta or prednisone. Good luck!

I am very excited, I had a blood test yesterday and my platelets are now a fantastic 217,000

I am so very pleased. I am currently on 10mg of prednisone and droping by 2mg per week now. I am also taking the Maharishi Amrit Kalash nectar and Ambrosia tablets (Ayurvedic medicine) If anyone wants to know the website I am going to for my products please email me (I was buying from Ebay but have found a proper site now)

I have another blood test in a month so hopefully I am able to report the same count or even higher

I was on the roller coaster of steriods for 3 years. Had my spleen removed, platelet infusions..., none of these worked long term. Rituxan finally seems to have worked for me. Last relapse was in July 2011, had a quick high dose of steriods and than Retuxin, been fine since.