Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

what treatment do i do next ?

More
14 years 2 months ago #22371 by DeeDee
what treatment do i do next ? was created by DeeDee
I went into remission back in 1989 and it come back in 2007. I've had treatments from IVIG,Rix, Pred, N-plate,cellcept, had assoc spleen removed and nothing seem to work, the doctor ween me off pred while on Promacta. But while I was on Predisone and Promacta my platelet shot up to 241 so I was weened of the predisone and lowered my promacta to every other day. I've watch my platelets slowly dropped to 65 two weeks ago so my doctor told me to increase my promacta to 25 mg every day. Today count was 35. I have to go see her on Wed.for my check up and see what the next step is. Nothing seems to work and I'm getting tried of being tried. I went and maybe still going through withdraws from the predisone, my body hurts and I'm containing fluids when I wake up in the morning my feet and hands are swellen, have pain that feels like its coming from the bones. I don't know what to think or do anymore.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 2 months ago #22398 by Sandi
Replied by Sandi on topic Re: what treatment do i do next ?
DeeDee - I wouldn't say that Promacta isn't working. Maybe you just need to raise the dose again. Is that possible?

How long ago did you stop Prednisone?

Please Log in or Create an account to join the conversation.

More
14 years 2 months ago #22400 by Ann
Replied by Ann on topic Re: what treatment do i do next ?
I'd think that 35 is an okay count for Promacta. I aim at 30 to 50 with Nplate. I don't want higher although I often get it. Funny now that I want low counts I can't keep them low.

Please Log in or Create an account to join the conversation.

More
14 years 2 months ago #22430 by DeeDee
Replied by DeeDee on topic Re: what treatment do i do next ?
The doctor up my promacta to 50 mg every day, we'll see what happens. I stopped my predisone in January but still hurting. My electro lights are out of wack but have to go the doctors tomorrow. Thanks for the input it really helps to know that you have support out there and that your not alone. Let you know what happens :ohmy:

Please Log in or Create an account to join the conversation.

  • weirdjack
More
14 years 2 months ago - 14 years 2 months ago #22436 by weirdjack
Replied by weirdjack on topic Re: what treatment do i do next ?
In one sentence you say "nothing seems to work", yet you have a 35k count with only 25mg/day dose of Promacta?
I would hazard a guess and say that Promacta IS working. ;)
Remember, Promacta is designed to keep one "around 50k" (safe), not boost platelets into the 'normal range'.
I take 50mg/day and my counts run between 40k and 50k.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 1 month ago #22452 by Sandi
Replied by Sandi on topic Re: what treatment do i do next ?
It can take a few months to get rid of the withdrawal. Hang in there.

Which electrolytes are affected? That can cause some serious problems/symptoms too if low enough.

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.