Mycophenolate and Eltrombopag

[lindylou45]

Hi, my daughter (who is 23) who was diagnosed in April last year with ITP and had a brain bleed in October 2012, has had flunctuating platelets ranging between 0 and 6, and has been on various treatments has now been put on to a combination of mycophenolate and eltrombopag ( as neither worked just by themselves) has anyone else with ITP had this combination together and if so did you see a rise in platelets and how long. Any comments would be appreciated. Thanks

[NickyD]

Good luck with the treatment. I am on mycophenolate and that has worked for me. I was going to be put on eltrombopag but my hospital could not get it. It is a roller coaster, just keep going and trying different combinations. NickyD

[lindylou45]

Hi Nicky, how long was it before you seen an improvement in your count and was it erratic or have your platelets raised and stayed at a good level, my daughter can't get past 6, thanks

[Charlie01Lake]

hiya im 23 to but I was diagnosed 6 years ago sorry to hear your daughters platletes are struggling can be quite scary specially for mothers. I haven't been on either drug ive been on predisilone for 12 months didn't work then I had imunnigloblin transfusions my boidy has got use to them now and im now taking dexamethasone and these are working there strong but I have no side effects which is good u could try metioniung the drug cuz I asked to try this drug after researching the drug x

my platletes went from 5 to 40 in 2 days on dex so cud be worth a try x

[lindylou45]

hi Charlie, thanks for that. I think dexamethasone is one of the few drugs we have yet to try as she has had so many different medications since diagnosis in April. At the moment our haematologist is keeping her on the mycophenolate and eltrombopag to see if there are any results, we are quite lucky If you can say having ITP is lucky ...) in that our hospital has been in touch with Dr Proven and he is liasising with our hospital. It is just so frustrating that we can't get in to double figures as she is unable to work at the moment and she seems to have her life on hold and only being 23 you will understand. Thanks for that I will keep dexamethasone in mind if the meds she is on don't work. Being ITP though you will know everyone is different.

[lindylou45]

Hi All, I feel I have to share my good news although I don't want to get too excited, My daughter has been on the combination of Mycophenolate and Eltrombopag for 2 weeks now and her platelets have risen from 6 to 94 in the two weeks, so we are really hopeful that this is working and not just a blip as she hasn't been in double figures with her platelets for a long long time. Kepping fingers and toes crossed.

[lindylou45]

Hi, I know I am probably being a bit boring now but my daughters count has fallen slightly today, its still good but its down to 51 still hoping that the combination of medication is the way to go.

[HOLCOTT]

Hi LindylouI hope you are well.

Just enquiring how your daughter is now....I am Considering Eltromobag and interested in your experience. I hope you don't mind me asking

Jen

[Metalgod]

I have been on eltromopag for a few years and it works well for me I was having one 25mg tablet every other day and platelets were between 70-90 once tested every 3 months But had covid early last year and my platelets crashed but now on one 50mg tablet once a day and platelets are back up over a 100 now

[lianaki in reply to Metalgod]

hello, I hope you are well, I read that your platelets were fragmented after the corona virus, I am 2 months after the corona virus and I was not affected by any medicine, how long did it take for the medicines to start workin?

I was on nplate and I lived a normal life, after the corona virus, which I passed very lightly, my platelets were 10