How were you diagnosed with PMR ? How are you currently managing?

@pmrnew
Hi! I had wondered about fasting -if that might help. My problem is that I lost a lot of weight plus all my muscles with PMR which started 2 years ago this month and I refused treatment for a year until I could barely climb my stairs. I was down to 89 lbs although I'm not that tall so since starting prednisone, I have gained 5lbs and that's about it. I can eat big quantities of food too. I don't mind that(only advantage to this) but can't follow a strict diet, I try to be careful about what I eat but when I get stressed and that is often, I eat things I shouldn't. But I rarely see a difference with food. I worked out a lot before PMR(I wonder how much of that caused the PMR) which really affected my hips and I broke one in April. Osteoporosis too. I'm still very active, the hip seems to have healed fine. But the more active I am, the more pain I have but I move anyway, walk, go to exercise classes, heat with wood so have to deal with that and these days rake too many leaves. The more I do, the worse the pain. I am on 5mgs and am scheduled to reduce by one mg(I might do a half for a few days) on the weekend and it isn't helping much when I'm doing so much. Has anyone else tried fasting even if they were at a low weight and how did it work out? My rheumaltologist is young and has no answers for me, he just wants me on stronger drugs and not the pred because of its effect on bones and for now, I don't want the other drugs. I tried a lot of natural things and nothing much helped the inflammation.

and once finished tapering off prednisone if PMR has lessened to manageable, I read that diverticulitis is also something compliments of pred, that comes on after stopping the drug. Every bit of info on diverticulitis says you should eat fruits, vegies, legumes, nut grains to generally avoid it, I do. No smoking drinking, check. When I felt this come on, I followed instructions, 60 hours water only. Yesterday I had a salad, by nighttime the pain increased to severe. Back to water only. I had thought once of the pred, things would be much better. Still muscle pain, fatigue, general malaise. Sorry, had to vent;-)

I’m currently 49 years old and I used AI (chat gpt) to diagnose myself. The markers in my blood weren’t showing inflammation at the levels where the doctors could diagnose. I was told “it stinks to get old”.

As far as treatment, I was treated with prednisone but found my healing through fixing leaky gut through diet and removing toxins through working out and sauna.

Good luck with your journey. Stay positive and be relentless

I entered my symptoms into Google and it said I probably have PMR. I then went to my Dr and told him I think I have PMR. He gave me a prescription for Prednisone 15mg, and I had blood drawn. Within hours of taking prednisone I started feeling better. Blood test came back CRP = 88 ESR = 53. In short I was on prednisone within a short period of time after symptoms began. I have now been on pred 11 months and am down to 4mg. I'm taking it slow because I'm going to be 84 in November and at this age looking for quality of life not quantity. I don't care if I ever get off prednisone.

@lhk2
Thanks for responding. There have been several postings since I asked that question which I have found to be very enlightening. I wish doctors were as good at explaining the PMR condition as some of you have been!

@dadcue
Love a man with a sense of humor.
Saw you have uveitis? My eye doc mentioned that when I informed him I have PMR. Good grief. Would you mind giving some background on that?

@bindie

Don't get me started on uveitis because I can expound on that forever. Do you have uveitis?

Uveitis and inflammatory arthritis are closely associated similar to the way GCA is associated to PMR. Uveitis is basically eye inflammation. My uveitis is autoimmune. The other types of uveitis are caused an infection or trauma to the eye.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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My uveitis is recurrent and tends to be aggressive. It flares up periodically. I lost count of the number of flares of uveitis I have had but more than 30 flares. My uveitis is treated with 60 mg of Prednisone and sometimes increased to 100 mg. Fortunately my uveitis has always responded to high dose prednisone and I can taper off again within a month or two.

@lhk2
Sorry to hear you're dealing with PMR too, but you're in the right place.
If you'd like to, you can always ask for a copy of any test results, blood work or any other tests. Personally, I prefer to learn for myself everything any test results show. If you use a lab like Labcorp, for instance, you can sign up for an account on their website and then you can view and print out any of your Labcorp test results. You can also ask your Dr's office for a copy of all your lab results, etc. Then you can do a search online about every blood test (put in the test name, ie: CRP, ESR, RA, ANA, CBC, Iron saturation, Ferritin, Hepcedin, etc, etc. I'm a newbie too (7/31/26) but it was my learning about all the different blood tests and then putting in my results along with my symptoms that gave me the PMR results I took to my PCP NP. Went to Rheumatologist within 2 days (they got me in on cancellation list- I had called and asked if they could put me on). She examined me, asked questions, and my blood test results, and she confirmed PMR, then next day she got me an appt for a Color Doppler Ultrasound of my shoulders and to check for GCA (Giant Cell Arterits), which people who have PMR can often have already or can develop so it's good for anyone new to be aware of. My Iron Saturation was at 9% and my Ferritin was high, along with high CRP and ESR, but RA and all other types of autoimmune were negative. If there's high inflammation our bodies produce Hepcedin, which blocks our available stored Iron, which makes our Ferritin go up. So with Ferritin high, you know there's stored Iron, but your body can't access it due to the Hepcedin (due to the inflammation). When you start Prednisone the inflammation will go down and the Hepcedin will go down and your iron saturation will go up. There's a lot to learn and because there's so many Dr's who don't know a lot about it, I want to learn everything I can. Also, it's just an old habit my former PCP taught me about 30 yrs ago. Be an informed patient, be a proactive patient and you'll have a much better life. Dr's today just don't have much time with each patient. I hope you find all the help you need and that we can help you too. Blessings.

I have a LabCorp account with all my blood work. My patient portal account also has all those results. I copy all the new results and put it to AI (I use the Claude app) and see what comes back. When you put all the results together, Al can look at the totality of those results and provide better feedback that you can discuss with your doctor. Claude is interactive and will routinely ask for prior results for comparison and trends. I don't use it for diagnosis, only for information so I know what to expect at my next appointment.

@dadcue
Sorry for delay in getting back to you. No, I don't have uveitis. I was just taken aback when my eye doc mentioned it can occur with PMR. I asked him how would you know if you had it and he said you would know because your eyes would hurt when you move them. Does that sound right? I have ocular hypertension and beginning MD so was just kinda bummed that there could be something else down the road due to PMR.