Hi my lovelies, bit 'not with it' at the moment, had a lot to take in. Things are no better but no worse. Strange thing is breathlessness - its not all being caused by lung problem but they think it might be anaemia. Had loads of tests, will be going on Mycophenolate when they've sorted things out. Any advice, knowledge on the above would be appreciated.
Keep safe everyone
Penny xxxxx
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Kimlu
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Is that an immuno suppressant drug? I don’t know about that one...how is it administered? I really hope it’s a good drug for you and sorts out what’s going on in your body a bit more! ...I have Rituximab infusions which is an immuno suppression drug. It help keep things at a level for me...my kidneys and pancreas rather than lungs though.
Hopefully once they start to treat the anemia the breathlessness will improve fairly quickly. I’ve read of people getting breathless with it.
I’m glad things are at least not worse! Bless you! It takes time to process what they say and find doesn’t it!
I heard about Mycophenolate, it's an immunosuppressant medication used to prevent rejection following organ transplantation and to treat autoimmune conditions such as Crohn's disease and lupus. Friend of mine used this when he had got his new kidney.
Sorry to hear that you are still breathlessness, I hope that you getting better it might taking some time but you getting there. 😃🙏😃 You take care and take all the rest you need.
Anaemia can make you breathless, so if that's what's causing it and they treat you for it you'll soon be feeling like a new woman! Now, don't go getting TOO excited about that - I didn't say what age the new woman would be so you may not be dancing on the tables, but I'm sure you'll be feeling better than you are now.
I don't know anything at all about the other thing you mentioned, but anaemia and me are old friends so I do know how much better the iron tablets can make you feel.
Hi Moy - could definitely do with being a new woman lol. I have a lot of faith in the hospital, they're all lovely. Will keep everything crossed that the treatment works for me, your message is very encouraging. Thanksyou xx
Hi Kimlu i have been taking mycophenolate for about 16 months it does at times make me feel a bit sick but no other real problems weather it's doing much is another thing as lasttime i went to papworth i was told things have got worse. They will start you on a low dose then increase over a few weeks and you have to have monthly blood tests. Pleased to hear things have not got worse for you, take care. xxx
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