Connect
Does anyone else feel isolated and misunderstood?
Hi, my name is Sandy. I’m very new to this whole thing. I’m 67, I’ve always been very active. Two years ago my husband died suddenly and it has taken me some time to figure out what I was going to do with my life going forward. I decided to put my energy into volunteering and staying busy with things I enjoy. Two months ago I was doing great, long walks, hiking, yoga, playing pickle ball 3 times a week, volunteering at a therapeutic riding stable, driving for the American cancer society. I was finally feeling good about life again and about myself. Then suddenly one day I went to do some simple stretches and noticed that I couldn’t touch my toes without pain in my sit bones. That pain continued to get worse, as I was driving it would hurt so bad that I would have spasms from my butt to my knees. At this time I was still trying to do the things that I enjoyed and I could if I took enough ibuprofen. But I knew something was not right so I went to my primary doctor. She ordered blood work for rheumatoid arthritis and one of the markers came back positive for antiCCP. She wanted me to go to the rheumatologist but I couldn’t get into one for 6 weeks. My pain increased and I started having pain in my hips, groin, shoulder blades, neck and upper arms. It got so bad that one morning I went to the ER I told him that something was really wrong with me. He did X-ray told me I was getting older, prescribed a narcotic, I told him that I had to drive because I lived alone and he said, I guess you’ll have to take an Uber. So then I went to an orthopedic doctor, he also told me that I was just getting older and I was showing some arthritis in my hips. I told him that I knew I was getting older but two weeks ago I was hiking up a mountain and felt fine.
I was finally seen by a rheumatologist and she immediately said, I think you have PMR, I had never heard of it! She started me on 15mg of prednisone, I have only been on it for 3 days and so far it hasn’t helped much but I’m really hoping that it gets better soon, this morning I was in tears and feeling very lonely. Is this going to be what my future looks like? Then I feel bad for thinking that because I know that I’m blessed and it could be worse. Thanks for letting me vent!
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
@jabrown0407
Is your pain under control? I worry about being on prednisone for years, what that will do to you, but the pain is so hard to deal with 😣
@sams57 I recently was diagnosed with another problem that layered with PMR was difficult to find. Please follow your doctor's lead and work with them, yet express your concern. Tell every doctor you visit so they know, and ask them if they have concerns and can you watch for anything. Talk to your PCP about it. The PMR dosages and timelines are not normally seen by doctors to be the high dose, long term times they are concerned with. For some autoimmune problems they start at 60mg a day. One day at that level would be long term to me.
@pmrsuzie
I am optimist that AI will be extremely beneficial in the medical profession and we will find both cures and better modes of treatment. Hang in there 1 day at a time! Hugs!
@kathleenclaire
I am starting kevzara this week. Nervous about it but unless I try it I think I’ll never know if I can get off never get off the nasty effects of prednisone. I am trying to be optimistic and understand that the sooner the better.
I was diagnosed end of August and am currently on 10 mg of prednisone. I am 78 years old today. Just want to have some quality of life left, whatever remains.
Happy Birthday!!
-
Like -
Helpful -
Hug
2 Reactions@caroljeand
Ditto Happy Birthday 🎂
Kevzara was a big gift to me, and may it be for you. It usually takes 30 days plus/minus to start working.
I’m 79, started Kevzara at 8mg pred. Was off Pred at my 9th shot (18 wks)
🥳
-
Like -
Helpful -
Hug
1 Reaction@caroljeand
Dear you, I’ll hold out hope that the Kevzara works wonders on you. Thank you for sending word.
I’m cheering for you. And I’ll likely be starting my own Kevzara adventure soon.
-
Like -
Helpful -
Hug
1 Reaction@tweetypie13
I’ll be looking forward to that 9th shot!😀