Vasculitis UK
5,435 members5,004 posts

Struggling with treatment for my Para neoplastic Encephalitis in the brain

I am being treated with 60mg of presione after three 1000mg infusions. I was told I would feel fantastic and I feel no different. I found this forum because of my stomach bloating and pain in my stomach and it was reassuring. I'm wondering what other treatment options there are that patients found to be more effective?

5 Replies
oldestnewest

I assume predictive text had a go at "prednisone"? Can't help re the alternative - but I do wish doctors would get it out of their heads that all patients feel fantastic on pred. NO WE DON'T!!!

Reply

Hi Silvis,

Do you have a diagnosis of Vasculitis? Prednisolone is used to treat many Inflamatory diseases but this forum is for patients with Vasculitis so we can't really comment on treatment for Para neoplastic encephalitis.

1 like
Reply

As othermembers have said

Reply

It appears that you have been "pulsed" with the three 1000mg iv preds whilst remaining on 60mg oral form. Whilst I have a vasculitis, I too have been "pulsed" on two occasions and continued on 60mg oral pred due to a couple of acute infections. It is not pleasant and certainly one would tend to feel worse rather than "fantastic", due to the impact high dose pulsing has on the body. Rapid swelling, (pred fat) breathlessness, systemic weakness and insomnia -that's certainlynot fantastic.

Hopefully the prednisolone will have stabilised your main condition and in time you should start to feel better. However it takes a reducing prednisolone regime to aleviate the side effects.

Reply

Thank you for the feedback. I look forward to the side effects to subside.

Reply

You may also like...