Promacta Dosage

Any on/ever been on 75 mg? Your experience(s) ? I just got upped to 75 mg after consistently dropping week after week on 50 mg. Checked in at 19 today.

Hi penlyn,
Read my posts about gradual improvement on75mg daily. I now seem to be stable at about 140 on 5x75 and 2x50. My consultant is reluctant to reduce dosage further as I too was once at a count of 13 on 50 mg daily.

I have been on 100mg daily since I started 1yr ago. It keeps my counts at steady 30-40 and then a gradual decline. I have IVIG every 2-3 mths to "kick start things again, I keep wondering if it really working for me. Any thoughts????

Sorry, I reversed dosage . Should be 5x 50 and 2x75. It took about 18 months to get stable at this level so hang on a bit longer Christine. I also had Rituxan in Nov 2015. It didn't seem to help in first 6 months but who knows what effect it may have had in long term.

Hi Margaret K. I'm brand new to this site and I'd love to read your post about gradual improvement on 75mg but I'm not sure how to find it. My son was on 50 and crashed in 1 week and then on 75 mg for 3 weeks now with a count of 7 so I'm extremely interested in reading your gradual improvement info. can you tell me how to find it.?
Thank you so much

I'm not too sure myself jkk but if you trawl through 'my Promacta journey ' and ' started Promacta 2017' you will find some. I am now trying to get down to 50 mg daily My last count a month ago was 145. I am now taking 75 mg just once a week and in 2 weeks hope to drop that too. I have been having some odd visual disturbances called ' scintillating scotoma' ,brief flashing lights in my vision so we have agreed to try to drop the dosage . So far since I went down to 75 just once a week I have had none.

Also, as an aside....after 5 days on 75 mg I had extreme bone pain and a constant headache. I try to stay away from ibuprofen and the Extra Strength Tylenol was not touching either symptom. I called my heme and asked if I could have a CBC, fully anticipating that my platelet count would be high enough for me to cut back, or a least take some Advil. I was at 232 (after having been at 29 then 79 the week before.) I skipped a day and cut back to 50 mg. I went in for a CBC 5 days later and was at 234, and still had the crazy pain. I took myself completely off for 5 days until the pan subsided and now am back at 37 mg. I’ll test next week. I am one of those people that actually feels better when my count is low. And at 234 I felt like I had some room to spare!

I'd certainly be dropping my dose with a count that high, too many big juicy platelets. A count of 50-100 is the recommendation.

Hi. I’ve been on Promacta a few months. I was on Prednisone too at first, but am now only taking 1 mg of Prednisine and currently 25 of Promacta.
Pennlynn or anyone else with experience...do you find that deep bone pain more common with a high platelet count?
I currently have that pain.
Thank you.

Sorry Nomad. Just saw this!

Yes! When my counts are high I have, without fail:

Constant banging headache
Bone pain
Fingertip and toe pain/pressure

That’s how Iknow I’m high. When I switched from 50mg to 75mg I instantly started getting too high, and this is how I know. Still working on dosage to try to get it right.

Here's an update on me and promacta. For the last month I have been doing 50 mg daily and today my count was 161 ( more or less same as last month) despite being on antibiotics and omeprazole for h. Pylori. I have done so well and been so stable for a year on a gradual reduction from75mg daily that I am reluctant to make sudden changes so I am just dropping to 25 mg once a week and 50 mg on 6 days till my next appt in 8 weeks. My haema has had 2 patients who have had remission on promacta and been able to stop it altogether but both were at 250 when they did that. I've had no more visual problems since I settled on 50 mg.

Penlyn...what is a high count for you? Especially as it relates to pain. What is your current count? Many thanks.

Margaret...were you on that tx for h pylori because you actually had reason you had thought you had h pylori and needed treatment or because there have been some people who have gone into remission using that protocol?

Do you have any fears that a high-ish count is a little dangerous while on Promacta? Promacta recommends 50. So over 100 count is twice what they suggest.

Believe me, I’m not trying to stir the pot.


These are some of the things / questions I’m struggling with.

You sound like you are doing well.

I have intermittent leg pain and GERD like issues. I’m on 25 mgs of Promacta. Last count was 100.

Thank you.

I had heartburn, got a test for h.pylori which proved positive so was offered treatment. Apparently links between h.pylori and itp have been found but mainly in the Far East according to my haema.
Because I had a bad year in 2015 ,appeared to lose response to promacta and became pancytopenic he is not keen on reducing my dosage unless I am over 150. For me , being at 50 is not secure enough , there is too little of a safety net should my response go down again. I like to travel a lot and should my count go below 20 he would not let me fly so to avoid the disappointment of cancelling a trip I prefer to stay between 50 and 150. He says that the protocol says to only drop the dosage when you exceed 150. He is a university professor of Haematology so I trust him. He is cautiously optimistic however that I may achieve remission.

I forgot to say that how I first discovered I had itp. 6 years ago was when I had a blood test for h.pylori. It was negative so h. Pylori was not then implicated as causing my itp. It will be interesting to see what my platelets do next. I have now read the article by Stasi and Provan that suggested a link. It is strongest in Japan where 70% of the pop has h.pylori of a particular genetic strain.

Interesting Margaret

I was tested for H Pylori as a matter of course as soon as I was diagnosed. Negative fortunately.
I asked my Consultant what was the lowest count she would let me fly and she said anything above zero.