Promacta:Indications and Response

[Susan]

My ANC is 0.3 usually around 0.6. The drop may be from fairly recent antibiotic use but began folic acid, B-1 and B complex in case that helps. Already on D.
Years ago I tried Procrit for low rbcs but got a rash. Both this and Neupogen are grown in Chinese hamsters and I apparently am allergic to them. (That would be funny if it didn't limit my med options). Plts not bad, moderately low.

Has anyone heard of patients taking Promacta just for the wbcs?
I've read sometimes the wbc goes up along with platelet count with Promacta. I'm looking for the response rate in the wbc line. Anyone have a good resource on this info? Or if you took Promacta did your wbcs increase?
Has anyone had a blood clot while on it (hepatic most often I believe).

I'm not sure if SAA one blood line - wbcs is an allowable indication for Promacta. But I don't see why it couldn't be given. Have yet to discuss with my Hem, waiting for next labs. But want to know just in case for the future.

My ANC will likely bounce back up a bit, if not I may want Promacta before cyclosporine as I have moderate chronic kidney disease from the PNH portion of my illness AA/PNH. Thanks.

[Sue H.]

Hi Suz,
My husband (diagnosed severe AA April 2012 - one ATG 2012 but no significant response) had a very good response to Promacta (Revoldade here in Europe, where we are) in all three bloodlines. Indicated usually for low platelets but apparently can have a positive effect on all bloodlines in the best scenario. He first had a significant response when on maximum dosage Promacta and then stayed on this dosage for well over a year. Recently they tapered the dosage and then end of Sep. he stopped Revolade completely. Thankfully so far so good and counts have held. He still takes Ciclosporin but they plan to try to taper that off in the New Year.
NIH have up to date info. on Promacta trials, findings etc - apparently some people in the trials have had a very good response to it - also in all 3 bloodlines.
Wish you all the very best and hope things go well for you.
Sue H.

[Susan]

Thank you. Good info. I have to check with a PNH specialist about Promacta. I recall reading somewhere it increases clot risk. I have PNH with a high clone. Getting a BMB next week and am being put on preventive antibiotics.

[Sally D]

Hello,

I have VSAA 2008, and relapse SAA 2010. I began seeing my blood count numbers drop the beginning of February. My doctor put me back on 1mg.of Prograf, twice daily 6 weeks ago and added Promacta, 75mg. once daily 5 weeks ago. Yesterday all my counts were up with platelet count up by 14. I'm doing weekly blood counts so this felt like a very positive change. Will be checked again next week and hoping for more good news with a continuing up trend. Guess you really need more than 1 week to be sure you are trending up.

Hope you are doing well. These are certainly not easy diseases!

Sally D

[Sally D]

Hello again,

I had more blood counts done on April 22nd. When I started Promacta my platelets were dropping about 6-8 per week. After a month the drop stopped and last week the Plt count went from 48 to 62. My other bloodlines went up modestly too. This week platelets jumped to 83 but the WBC and Hemo both went down. We are celebrating the platelets and hoping for more improvement next week.

Feeling very tired and fighting an infection so not sure what is related to what. Happy with the Promacta in the short run but not sure about long term effects.

Anyone else with results on this drug?

Stay positive.
Sally D

[Sally C]

Hi Sally,
Please look up my posts regarding my husband's amazing response to Promacta. After over 125 platelet/blood transfusions he has been transfusion independent for 3 years now and has been off all MDS drugs for 2 years. It does take a little while but it brought up all 3 blood lines. He tolerated it very well.
God Bless,
Sally

[Sally D]

Hi Sally,

It was good to see your positive reports on Promacta. I'm feeling very blessed today because my lab report showed my platelets have reached the low normal range. They have jumped up over 110 since I started the Promacta 10 weeks ago. I've been taking 75mg once a day along with 1mg. of Prograf in the am and pm. My doctor said she wants me to stop the Promacta in two weeks which will be a three month course of treatment. She mentioned side effects. I haven't been able to find much information on Promacta regimes and I'm wondering if it's prudent to stop something that is working so well. Has anyone had experience with this?

Feeling very fortunate today, also love talking with another "Sally".
Sally D

[Sally C]

Hi Sally,
Yes - good to talk with another Sally!
Once Don's platelets went over 100,000 they started to wean him off due to the greater risk of clots. He has maintained all 3 counts for over 3 years even though he has been off Promacta for several years. It does seem to have an amazing lasting effect.
Please keep us posted.
God Bless,
Sally

[Sally D]

Hello Sally,

Thank you for your positive reply. It seems your husband has really benefited from the Promacta drug. At the moment my blood counts are pretty good and I'm celebrating avoiding a full blown relapse. Feel so grateful.

My local doctor after consulting with my Stanford doctor wants me to stop the Promacta at 3 months, next week. I know they are both very aware of the side effects.

I'm staying on the Prograf (immunosuppressant) for now and praying for continued good results.

Wishing you and your husband the best.

Sally