HI .thaks for answering my question has anyone has side effect from mycophenolate

[farideh]

and are you alowed to fly

[lindylou45]

Hi my daughter has been on mycophenolate and eltrombopag since November and she doesn't seem to be suffering any side effects. She is going going on holiday at the end of June and as long as her platelets are at a good level then I don't see the problem in her flying , if you are concerened you should maybe speak with your consultant haematologist. Hope this helps.

[NickyD]

The only side effect I have had on mycophenolate is a very dry mouth during the day and a slight sore throat in the mornings. Being able to fly depends on your platelet count. I saw my consultant on a Monday morning at hospital and had to cancel my holiday to France on the following Saturday because my count was very low and it was dangerous for me to fly. Do you have any side effects on MMF? NickyD

[kered]

Although there is no evidence for inter cranial bleeding at low platelet counts,20 seems a reasonable cut off point for more careful consideration. My haematologist advises 50 or above.that means if I fly below that it would be against advise and therefore would invalidate my insurance cover.

As a question to Nicky on MMF, like you my dose of MMF has been reduced to 1.5g per day and I am to be tested in 2weeks,what happened to your relatively stable count at 2g/day? I am flying to Belfast from Edinburgh in 2weeks time.

[gr8tmumof2]

My daughter is on 180 mg pills. She takes 3 of them 2 times a day and she has never had any side effects. She has also never had any response to it....She was just taken off of it as of yesterday and we where on a 5 mth trial of it. The Dr is Sick Kids just booked My little one a surgery to take out her spleen now :(....not looking forward to that at all considering there is only a 70% chance it will work. And i have been advised that if you have counts that drop quickly and you frequently needs treatments to not take a plane at all. you might have high enough counts to get there but what happens if you need treatment before you get home or before you can get back on that plan to go home....

[kered in reply to gr8tmumof2]

Splenectomy is an old and drastic treatment from the early 20th C,before even steroids became available in the 1950's. I share your concern for your child of only 6years when all treatments so far have failed.But splenectomy is only another treatment,but one that cannot be reversed. Just a quick thought but have you been into the Discussion Group of the American support group at pdsa.org where there is a whole section on parents and children with ITP. Derek

[gr8tmumof2 in reply to kered]

yes i have, seen quite a few adults there with ITP and a few with children. No one there has such an aggressive form of ITP as my little one but it was great to meet everyone and see the different paths that people have taken. A few of the adults have got the splenectomy and some of them did not work but im still trying to keep good thoughts about it all, I want to go again but i personally dont know when or where they are meeting next

[kered in reply to gr8tmumof2]

I understand your concerns about flying under the circumstances,especially to the US where medical costs are so high.Keep up those good thoughts and good luck to your little one. I deleted my first reply because I only got as far as I understand before pressing the Reply button.

[lindylou45]

Hi my daughter seems to have stablizied at between 60 and 70 so we are hoping that is enough for her to fly with. She had an intercranial bleed last October but at that time her platelets had been at 0 for a number of weeks. MMF twice daily and eltrombopag combination seems ti have helped. We always go on the advice of our haematologist though.

[lc12345]

Hi,

I had no side effects on 1.5g but a month ago was reduced to 1g and have a dry nose and eczema like when I just started on 1g before increasing to 1.5g. It seems my dermatological issues now appear, for those dosage is probably not right, going to talk to my doctor about it.

[Ltinny]

I have been on 1000 mg of mycophenolate for about 10 years now for lupus. I can honestly say I have not had any side effects, except a little dry mouth. In the beginning I did have a little bit of GI distress about 1/2 hour after taking it, but it was nothing that I had to change my day for. Hope this helps, wish you and your daughter well.