Fostamatinib Trials

[Sachmo16]

Hi I was diagnosed a year ago with ITP and not responded to Steriods, MMF and Rituxamab, only treatment that raises my plaltelets is IVIG temporarily. I have now been referred to Oxford and they are trialing a new drug called Fostamatinib - I had never heard of this but they would like me to start trialing it and I have two weeks to make a decision. Has anyone had any experience of this drug? It has apparantly had good success with ITP patients already and the side effects are not too bad, mainly upset tummy and nausea. I know they are a few more treatments I could have that have been around a while - Nplate and eltromobag but at the moment they do not think these are suitable for me as I do not bleed with my ITP just bruise heavily. Any advice would be great as really not sure I want to be a guinea pig for this new treamemts but it could work and help others in the process! Thanks

[Robert1959]

If you go to the PDSA website Discussion Group, under the category 'Treatment General' there is a lady (MrsB04) who took part in the Fostamatinib trial and so it maybe worthwhile you looking at her comments.

I am not sure about your comment regarding NPlate - I was considered severe refractory but never bled however NPlate was a huge success for me. I would have thought that one of the proven treatments would have been the better option rather than a trial drug.

Best of luck.

Robert

[Swetal]

Take tab.Dapsone 100mg once a day. My 1 year son's platelets rising from 18000 to 270000 within 15 days

[scaryteacher]

I was reading about this on the website of the U.S. company that makes the drug. It said it was gentler than steroids, and not so many side effects.

[kakkar_vikas87]

Hey, no need to take any drug....I was having homeopathic medicine, you wont believe with in 10-15 days my platelets increased by 90000 and it don't have any side effects. I can help you with if you want.

[magone7 in reply to kakkar_vikas87]

Hey, what kind of homeopathic medicine is it?

[kakkar_vikas87 in reply to magone7]

I don't know name.....if you want u send me your latest blood reports...I will share your reports with my homeopathic doctor..then only I Will be able to tell you...

[magone7 in reply to kakkar_vikas87]

usually I have from 15000-30000. The last one was on 31st of August. And then there were 27000 platelets. I have used only prednisolon for 10 years. In my country hematologists don't offer other medocine for this illness. I have tried also IVIG but it worked for very short time.

[kakkar_vikas87 in reply to magone7]

Can you mail me your blood reports....I will take print out of your reports to the doctor.....

Emailid: [e-mail]

[5bella5]

Hello Sachmo16:

Personally I would try all the natural treatments availabłe first. There is a Homeopathic treatment available that somebody posted about. He said he is willing to work with anybody and send them the meds. You would only pay for the meds and postage. I will post his contact information later on today.

I too was diagnosed with ITP a little over six years ago. No brusing or anything at first. I had every test known to man including a bone marrow biopsy( which was very painful), but none of the specialists I consulted could pinpoint the cause. One year ago I was preparing for shoulder surgery, my platelets were 30,000. So my surgery was cancelled twice. In the mean time I was put on 60mg Prednisone (the evil drug). All it did was make me gain 18 lbs and my nose and gums bled. It was horrible!! I tried herbal meds, papaya leaf tea, Chinese medicine and a herbal blend from India, which a very kind and generous person sent me and paid for out of his own pocket. None of these things worked. Here's the miraculous part of the story. I'm writing about this to suggest not giving in if at all possible. I have been on the same Thyroid meds for over 20 years. Suddenly I felt that it was just not working any more and it made me feel bloated. My doctor very grudgingly put me on Armour Thyroid and BINGO! My platelets went from 60,000 to 92,000 in one week. 4 days later another CBC and my platelets are 151,000! Three of the top Hematologists in California said that my ITP was not caused by any of the meds I was on and they were all wrong. Perhaps you want to discuss your meds with a professional who may be willing to switch them and see if your platelets go up before trying something that is in trials. Good luck & God bless.