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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!
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@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!!
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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)
🥳
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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.
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1 Reaction@tweetypie13
I’ll be looking forward to that 9th shot!😀
@rooster65
Peter, thought I would let you know that I did end up calling my rheumatologist. She said that I should have had relief right away. She actually changed my medication to Methylprednisolone which I guess is a little more potent than prednisone. She is having me take 5 pills a day for 7 days, then 4 pills a day for seven days and so on until I’m out. We’ll see, I am so much better, but still have lingering pain in a couple of areas. I started playing pickle ball again this week 🤗
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5 ReactionsPlease don't feel alone, I hope you have been in this forum almost daily, if possible. Your pain and journey sounds familiar, many of us have been on it for years. It will get better, the more you understand AIs, if that's the proper diagnosis, sounds like it's AI.
My Mom was put on ridiculously high dosage of prednisone (80mg and shes 110 ish lbs) and it ended up giving her a psychotic break, while overseas no less. Anyway, she gets a new Rhuemy (the other was VERY old school and knew nothing about methotrexate), she was much better when on more appropriate dosage of the steroid in conjunction with the Methotrexate. For years now she's been on a maintenance of MTX and only had to go on a (nipper dose as I call them) shortened dosage & taper down in week or two, this nipped the future flair up that was about to happen because her SED rate ticked up very slightly. That current Rhuemy did not think she needed a Nip dose/round of prednisone based on her numbers. She knows her body so went to her PC and he's now helping her to manage it (shes 85) and he listened, and put her on the Nip it regimen on prednisone.
Moral of the story, you will get to know your body and its reactions, level of pain etc. And if your Rhuemy or doc isn't listening to you, find another doc who will.
I'm praying my ultrasounds will tell the story and my pain is inflammation related, even though my SED rate is most often in the "normal range".
What is the "normal range" based on anyway? Certainly NOT enough women as test cases, probably majority men. VERY different body makeups with hormones playing a HUGE role.
Good luck and you are definitely not alone ❤️ 🙏
Wendy
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