Splenectomy

[Ozjock13]

We'll,it seems that you have to get your spleen out in Australia before they will give you NPlate or Electompag,my wife's is booked,still not sure though....

[NickyD]

I had my spleen out and the operation had no effect. So I have to take penicillin twice a day every day from now on. I also am prone to get other infections that last longer. If there is any way you can avoid splenectomy, I suggest you take that route. NickyD

[Ozjock13 in reply to NickyD]

Thanks for the input,it's a nightmare either way I think but she is desperate to get off the Pred as it's driving her crazy,seems they won't give her any other treatment again that she's already had,so we are stuck with this option now.many thanks, and sorry to hear yours never helped

[NickyD in reply to Ozjock13]

I am on Mycophenolate and that is keeping my count stable - can you ask for that?

[Ozjock13 in reply to NickyD]

Not really sure what we can or could get,Hemo has just about said,spleen out next,then if that doesn't work she will get trying other treatments,the Prednisilone is making her feel really sick for a good few hours a day now and getting worse,I will try find out about that one. Cheers

[kered in reply to Ozjock13]

I have been on Myccophenolate for over 2 years and at a dose of 1g per day is working well with relatively stable counts about 100. The down effect is that it is an immunosuppressant, but it does give you control of your life back. I agree with Nicky and avoid splenectomy if possible.There are many new treatments now available. Good luck, Derek

[andrea_41]

ask your consultant for any other treatments other than steroids , as i my self cant take them any more as they stopped working have just tried revolade but didnt take to side effects am about to start ritumuxamab again no side effect and keeps me stable for a while at least