Platelet Disorder Support Association

Join Us:

Become a Member

Support Us:

Make a Donation
    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!

Order of treatments

More
15 years 4 months ago #4932 by jtx
Order of treatments was created by jtx
How did you decide in what order to try treatment options? If you care to, please share the order of your treatments and any info that helped you make the decision about the next treatment. Thanks very much.
More
15 years 4 months ago #4933 by Ann
Replied by Ann on topic Re: Order of treatments
I had IVIG, WinRho, prednisolone, mycophenolate (CellCept), azathioprine (Imuran), dexamethasone, low dose pred on and off, romiplostim (Nplate). It all just seemed to be a natural progression.
  • server
  • Offline
  • newcreationchangingdaily
More
15 years 4 months ago #4935 by server
Replied by server on topic Re: Order of treatments
I think everyone starts out with Steriods. Didn't work for me.
Had several platelet transfusions, that's not treatment but just a quick fix.
Then (currently) Nplate. It's working great. Even to well I think! I think they are giving me to much, not sure yet how all that works though. My counts on it have gone up as high as 377. After missing a week of it I was at 200.
Had my 2nd treatment of Rituxan yesterday. Slight reaction on the first one but the 2nd one went well, and fast! Only 3 1/2 hours.
The doctor has made all the decisions. I'm still learning!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
More
15 years 4 months ago #4937 by Sheryl589
Replied by Sheryl589 on topic Re:Order of treatments
Kayla first had IVIg. She did that every 3 - 5 weeks from Feb 2002 to June 2005.
In between those we had platlet transfusions and tried Whinro. She had a severe reaction to that. She has never had any steroids. Doctor strongley suggested spleenectomy in June of 2005. It worked for almost a 1 1/2 years. Currently she has IVIg approximatley 3 times a year. So maybe you could call the spleenectomy semi sucessful.

Mostly people just do what the doctors tell them to do. I see the above post mentioned Nplate. I'm wondering if its something we should check into but I dont know much about it.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 4 months ago #4945 by Sandi
Replied by Sandi on topic Re:Order of treatments
I had Win-Rho first, then Danazol, Prednisone, and Rituxan. My order was a little strange. I think most people do what the doctors suggest at first, then they start making suggestions. I did.
More
15 years 4 months ago #4947 by BethF
Replied by BethF on topic Re:Order of treatments
My son started with Prednisone, then went to WinRho, IVIG, Rituxan, back to IVIG, and is currently using a Win-Rho-like product, Rhophylac.

Good luck with your treatment.

Beth - mom to Brady (age 13, diagnosed 1/18/02)
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)
Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

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.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2025, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use