It’s back!

Posted by frankiechi @frankiechi, Oct 9 8:51am

Relapsing after eight years. Back on Pred. Last bout lasted 13 months. Hoping to contain the beast one more time.

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Profile picture for voll @voll

Yes this is on my second go around after 10 years. Well, after you get over the disappointment you get your meds and start down the road to tapering off. It sucks but it’s better than other conditions we could be dealing with. Hang in. We will get through it. 👍 someone just asked if I was done yet. No. Down to 2 mg of prednisone and weekly methotrexate. But we are getting there!

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@voll How long did it take for the methotrexate to start working? I’ve been on it (with no prednisone) for 2 months, but it still kicks my butt when I take it. Patience is wearing thin!

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Profile picture for vanmeerd @vanmeerd

@voll How long did it take for the methotrexate to start working? I’ve been on it (with no prednisone) for 2 months, but it still kicks my butt when I take it. Patience is wearing thin!

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@vanmeerd to tell you the truth I don’t know if it’s working. The first time I was on prednisone only. This time it’s prednisone plus methotrexate. But I really can’t tell you if the methotrexate is doing anything. I found taking the full dose, the doctor prescribed was making me too nauseated so the previous two months I decreased taking half of it. So I feel better from that regard and I’d love to tell you that it works, but I don’t feel any different than I did the first time I had PMR. I know that doesn’t really help you. I’m down to 2 mg of prednisone and I don’t see reducing anytime soon as I’m still experiencing shoulder pain. Not a great deal, but it’s not going away either.

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Profile picture for mcgeehin @mcgeehin

Has anyone had bruising and skin tears while tapering down? I’m down to 2 mg a day and notice bruising that is worse than ever ( and I’m on Eliquis so I’m very familiar with with bruising).

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@mcgeehin I’m still taking Eliquis and skin is back to normal (thick again) but when I was taking more than 10mg/day of Prednisone my skin was super thin and I was always getting cut and bleeding. Many times I didn’t notice it at the time, but hours later. Prednisone and Eliquis is not fun, it wore me out having to be on alert all the time avoiding a rub or scrape that would tear the skin and bleed for a long time. At 2mg/day of Prednisone, I’m surprised to hear that your skin is still so thin. How long have you been in Prednisone?

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Profile picture for mcgeehin @mcgeehin

Has anyone had bruising and skin tears while tapering down? I’m down to 2 mg a day and notice bruising that is worse than ever ( and I’m on Eliquis so I’m very familiar with with bruising).

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@mcgeehin I’m on 1 mg of prednisone. I’ve been on prednisone since end of March 2025 (& have gone very low tapering this year) & added methotrexate end of May, 2025. My skin is still incredibly fragile. Red bruising at the slightest bump, skin tears at any prick I get from branches outside. Quick to bleed. I can even wake up with a red blotch bruise on my hands or arm just from how I sleep!
I don’t what to do about it. I am 73 & the bruising is unsightly. Embarrassing!

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Profile picture for voll @voll

@vanmeerd to tell you the truth I don’t know if it’s working. The first time I was on prednisone only. This time it’s prednisone plus methotrexate. But I really can’t tell you if the methotrexate is doing anything. I found taking the full dose, the doctor prescribed was making me too nauseated so the previous two months I decreased taking half of it. So I feel better from that regard and I’d love to tell you that it works, but I don’t feel any different than I did the first time I had PMR. I know that doesn’t really help you. I’m down to 2 mg of prednisone and I don’t see reducing anytime soon as I’m still experiencing shoulder pain. Not a great deal, but it’s not going away either.

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@voll Thank you for your reply. I decided to give the methotrexate 4 to 6 months to kick in. I don’t know if I’ll last that long. I also was getting sick from the 15 mg dose, so I now take 3 in the am and 3 in the pm. I never want to go back on prednisone, so I’m thinking of giving up meds entirely. What a confounding, awful disease. Could be worse, but it’s not fun.

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Profile picture for vanmeerd @vanmeerd

@voll Thank you for your reply. I decided to give the methotrexate 4 to 6 months to kick in. I don’t know if I’ll last that long. I also was getting sick from the 15 mg dose, so I now take 3 in the am and 3 in the pm. I never want to go back on prednisone, so I’m thinking of giving up meds entirely. What a confounding, awful disease. Could be worse, but it’s not fun.

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@vanmeerd ya that’s tough. The problem is that you need to replace the cortisol that your body is not producing. That’s where prednisone comes in. Ask your doctor but I don’t know of any replacement. Hope it goes well for you.

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Profile picture for kare1 @kare1

@mcgeehin I’m on 1 mg of prednisone. I’ve been on prednisone since end of March 2025 (& have gone very low tapering this year) & added methotrexate end of May, 2025. My skin is still incredibly fragile. Red bruising at the slightest bump, skin tears at any prick I get from branches outside. Quick to bleed. I can even wake up with a red blotch bruise on my hands or arm just from how I sleep!
I don’t what to do about it. I am 73 & the bruising is unsightly. Embarrassing!

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@kare1
Thank you for your response. I will certainly be asking about this at my next Dr appointment.

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I am the same. It is maddening to be so blotched with bruises and some even open skin tears, and just from sleeping

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Profile picture for John, Volunteer Mentor @johnbishop

@walterl
I've had some of those same thoughts since I have other conditions that give me grief from time to time. I also have degenerative disc disease and arthritis along with carpal tunnel in both hands. I had my right knee replaced due to bone on bone pain. My left knee is also bone on bone but I don't have any pain so am choosing to leave it be for now. I think all we can do is take things day by day and do the best we can along with eating healthy and staying active. I do try to limit inflammatory foods and sugar but I do have my days.
Hoping all of those in remission from this disease can stay that way.

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@johnbishop
I have been in remission since I took my last 0.5 mg dose of prednisone in late July. I want to thank the Mayo Clinic PMR group for their support and encouragement, particularly when I was in the early stages of PMR and dealing with GCA also. There were so many questions and seemed to be so few clear answers. In retrospect, I feel I was blessed with a very easy journey with PMR and GCA, and realize this is often not the case for many people. I would say, though, that worrying about a recurrence of the disease is to prolong the suffering it causes. The Bible tells us not to worry about tomorrow; each day has enough worries of its own. I think that is good advice. We don't know what the future holds, but ongoing worry makes us continue to suffer from PMR/GCA.

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Profile picture for ga29 @ga29

@johnbishop does this happen for most of us suffering from PMR, a remission? Does it just naturally happen?

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@ga29
I came down with PMR in the year 2000, so 26 years ago. I've never had a recurrence since. The doctor started me on Prednisone, which helped immediately, but because of side effects I learned of through googling I asked the doctor how soon I could get off it. He told me that since it had been less than 2 weeks since my first pill, I could quit cold turkey, which is what I did. Googling back then also said it could last 2-5 years. For close to 2 years it was really rough - especially the shoulders and upper arms. I don't know if that could be why I've not had a recurrence. (I'm 87)
A friend came down with PMR about 5-10 years after me; she took all the meds. She's never been able to get weaned off of all of them and she developed osteoporosis which she definitely blames on the Prednisone. She says she wishes sometimes she'd have toughed it out like I did.

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