ANCA Vasculitis: Side effects of 60 mg of prednisone a day?

Posted by joroy @joroy, Sep 25, 2023

Is anyone else having side affects from taking 60 milligrams of prednisone a day? I’ve been on it for 2 months, seems to be effecting my memory and not acting myself.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

I forgot to say I was diagnosed with Anca Vasculitis

REPLY

@joroy yes, prednisone has lots of side effects. It can change your mind as well as you body. You can get nasty, cranky and your family will not recognize your mental state.
Hunger causes “apple” belly, “moon” face, and a “hump” neck. I gained 40 lbs.
It’s nasty stuff, but it’s a lifesaver!

REPLY
@joroy

I forgot to say I was diagnosed with Anca Vasculitis

Jump to this post

Welcome to Mayo Connect. I see that you have been following for a while, but recently decided to post. I hope you find someone else who shares your diagnosis, but in the meantime, I can agree that prednisone therapy can be really tough to tolerate.
I always warn my family when I need to start it again!
Has it helped to get the vasculitis under control?
Have you asked your doctor about trying to taper off a little to reduce the side effects? Do you have a long term treatment plan in the wings?
Sue

REPLY

It is a nasty drug. So sorry.

WhenI was diagnosed with ANCA Vasculitis -Granulomatosis with Polyangiitis, I was only on 60 mg of Prednisone for 2 weeks before starting to taper down. 60-50-40-etc.

I was also on Rituxan infusions almost immediately. I wonder why your Rheumatologist isn't trying to get you off Prednisone more quickly... it's worth asking the question,,, or getting another opinion.

This is not a disease where one can be passive. Question everything.
Sorry for what you are going through. With the right treatment it gets better.

REPLY

Why so long? Yes it will affect memory etc.

REPLY

Said they were waiting for kidney numbers to look better.

REPLY

I went from 100 to 60 after 8 days. Ooof! Went from sorta okay to back in bed. Couldn't do it! My doctor allowed me to go back up to 80. Yes, I am not myself...hard to concentrate, sleep, short term memory is really bad but I am just waiting for okay from insurance to start rituximab infusions. 😂 Funny, their comment is that it is not FDA approved. Not too smart, considering there is no FDA approved treatment! So, just keep advocating for yourself! I am getting better at it.😌

REPLY
@teach3foruyahoocom

I went from 100 to 60 after 8 days. Ooof! Went from sorta okay to back in bed. Couldn't do it! My doctor allowed me to go back up to 80. Yes, I am not myself...hard to concentrate, sleep, short term memory is really bad but I am just waiting for okay from insurance to start rituximab infusions. 😂 Funny, their comment is that it is not FDA approved. Not too smart, considering there is no FDA approved treatment! So, just keep advocating for yourself! I am getting better at it.😌

Jump to this post

Yes Actemra and it works really well and fast. On it years. On and off.

REPLY
@teach3foruyahoocom

I went from 100 to 60 after 8 days. Ooof! Went from sorta okay to back in bed. Couldn't do it! My doctor allowed me to go back up to 80. Yes, I am not myself...hard to concentrate, sleep, short term memory is really bad but I am just waiting for okay from insurance to start rituximab infusions. 😂 Funny, their comment is that it is not FDA approved. Not too smart, considering there is no FDA approved treatment! So, just keep advocating for yourself! I am getting better at it.😌

Jump to this post

@teach3foruyahoocom When I first started rituxan, i was also told that they wouldn’t cover it because it was being used off label. The doctor called insurance/ manufacturer and explained that it was the only drug that worked, so they gave their OK. Hope your insurance says OK!

REPLY

I hope they will change their mind too! I am just beginning to look at clinical trials. Spoke to coordinator from Mayo Clinic Rochester today. She was so kind and understanding. My neurologist isn't very comforting or helpful. But again, it's a 4-yr. commitment and you basically have to live near the clinical trials location.

REPLY
Please sign in or register to post a reply.