ITP Support Association
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MMf and Haemorrhage

Hi all,

I have a couple of questions and would welcome your contributions. Thanks. Firstly anyone on MMF - what is your experience with this treatment for ITP, any nasty side effects and does it work?

Secondly do you personally know of someone who has had an intra-cranial haemorrhage as a result of low platelets? What happened?

Many thanks.

Rafiq

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Yes, I am no MMF and I am not suffering from any major side effects except for acne. I am taking 500 mg two times a day and am stable on MMF for 6 month. My counts remain stable at about 250000. I was started on 1000 mg two times a day and on tapering dose, now I am on 500 mg.

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Thank you Grishu90, this is useful to know.

Best Wishes.

Rafiq

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Hi Rafiq

I took MMF for a while. It worked well at raising my platelet count taking it up to 150. I did have some side effects though. It gave me mild stomach problems and made my skin very sensitive to sunlight, with a very itchy rash. I now have a short course of steroids if my count goes below 10. I don’t really get any symptoms until it gets that low and thankfully have no experience of haemorrhage.

Regards Janet

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Thank you Janran, I find your response a little puzzling. My haematologist informed me that MMF was really a life long treatment.. I am currently on steroid for a couple of weeks and I am told that I cannot stay on this for long period of time.

Best Wishes.

Rafiq

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Hi Rafiq

Yes the plan was for me to stay on the MMF but the itching and stomach problems were quite unpleasant. As I have no symptoms until my count drops to under 10, I decided to go for the watch and wait method with no treatment at all until I notice bruising. I can access the hospital (which has an ITP specialist) at any time if I need to. I’m also lucky that steroids work really well and really quickly to bring my count up to over 100. So I have a short course of a couple of weeks on a low dose if I need to raise the count. This is working well for me at the moment. It’s a strange disease as it affects us all so differently.

Hope you manage to find something that suits you well soon.

Regards Janet

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Many thanks Janet, really useful stuff. Pleased that you seem to be dealing with ITP in a positive way. Will be seeing my haematologist a week on Friday so plenty to talk to her about.

Once again thank you.

Rafiq

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Yes I was on mmf therapy 500 mg TDs for six months,initially under steroid cover,which were tapered my count is stable and Ian in complete remission for a year without any medicine,count is stable at around 1.30 lac,

All other modalities had failed for me and was being considered for splenectomy ,as per my knowledge,and apriasal a repeat is necessary only if relapse occur,but duration of remission may be few months to few year

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Hi drsksharma,

Thanks for your response. Just one question, I am sorry but I am not sure what 1.30 lac actually is.. Thanks.

Rafiq

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Hi Rafiq yes I had taken MMF for 9 month but it not work for me and side effect stomach upset loose motion for 2 months weigthloose 10 kg in 2months and I lose my hair.Badly hair fall at last wbc gone down low side til now it not coming up my doctor stop MMf for me. Last 2 year I m on revolade 25 it work very well work for me and now also I am taking revolade 25 but very costly I have chronic it for 4yrs.

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