1. < Polymyalgia Rheumatica (PMR)

Living with someone on high-dose long-term prednisone

Posted by isabelle7 @isabelle7, Apr 3 3:43pm

I’d love to hear other people’s experiences of living with someone on high-dose, long-term prednisone. My husband has PMR and a serious case of GCA (giant cell arthritis) and I feel awful for what he’s going through. I’m doing my best to support him and advocate for him. In the meantime, he just went down from 80 mg prednisone to 70 mg and tapering is going to take time. He’s also taking Actemra injections weekly. The prednisone really affects his moods and personality. Suffice it to say he’s difficult to live with. It would be nice to hear from others who have gone through this and how they coped. I hate to even complain and feel blessed that he’s out of pain and things have stabilized. His levels were so bad he ended up in the hospital last month with three days of 1200 mg IV infusions of methylprednisolone. It’s not been easy and I feel awful for what he’s going through.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

isabelle7 | @isabelle7 | May 9 8:48pm
In reply to @glinda47 "Seems appropriate to me to file against this woman. She did not do her job which..." + (show)
@glinda47

Seems appropriate to me to file against this woman. She did not do her job which involves matters of life, death and other devastation, such as blindness!!! I notice the reluctance sometimes with docs to run comprehensive labs that can be so revealing of disease, etc. I understand that there are few real specialists in this country, ones who have the passion, humanity, brains and work ethic to really dig in, research and get to the bottom of an illness.
They have saved people who literally did not want to live anymore and had been to 50-60 docs, specialists included and no one could help them.
Thankfully, your experience turned out well.
Wishing you the best.

Jump to this post

@glinda47
I haven’t had the time yet but I do think I should file against his former doctor. Especially reading another person’s response to your comment that her father in law with GCA went blind in one eye and had an aneurysm. These and worse could have happened to my husband because of her mistakes.

Our new doctor, who is the chief of rheumatology and who knows what happened and how unhappy we were, has been awesome. She is on top of everything and very responsive to our questions and concerns. A breath of fresh air.

REPLY
isabelle7 | @isabelle7 | May 9 8:49pm
In reply to @nicolemag "My father in law lost vision in one eye and had an aneurysm from GCA. Terrible..." + (show)
@nicolemag

My father in law lost vision in one eye and had an aneurysm from GCA. Terrible disease, demand bloodwork.

Jump to this post

I am so sorry your father in law had such a horrible case. It is a terrible disease.

REPLY
alissahe | @alissahe | May 10 10:01am

I’ve been on 10-15 mg of prednisone for about 18 months. Mostly I manage to curb my irritability but not always. CBD really smooths out the rough edges. I don’t do it often but I love knowing it’s there….so does my husband, who’s been a super hero as far as patience and compassion

REPLY
View MoreView Less
Please sign in or register to post a reply.