PMR Dosages and Managing Symptoms

Hi Teri
Thanks so much for sharing this information! I am now convinced the pain under my arms is PMR because every time I start to ramp down, the pain comes back and likewise when I ramp up it goes away. I was worried it was something more serious at first, but I think it’s PMR. I hope the PT is able to help your shoulder, etc.. I’ve always found PT to be extremely helpful.Thanks for the recommendation of the infrared heating pad. I’ll give it a try.

Hi @juneh You are welcome! My former PCP told me he missed diagnosing my PMR because my symptoms weren't textbook. If only our bodies knew they should follow the rules! I've been going to PT for nine monhs for my shoulder now and it's showing some improvement. Hope you feel better. Maybe consider asking your doctor about a slower taper, like down 2.5 mg instead of 5 mg?

As the guy said - "What a concept!!" You flat out asked him, and he flat out answered!! Wow! I think I"ll have to try that!! When I was first put on prednisone, after being in horrible pain for months, I thought I'd gone to heaven!! No more pain!! Then the pain has gradually come back, and if I hadn't been on this site I'd be really floundering!! But still, no one has told me I shouldn't BE in pain!! I thought that's just the reality of this roller coaster ride!! Thank you Abbey!!

What were your symptoms of GCA? I have just been diagnosed with PMR. Did 5 days at 40mg and now 2 weeks on 20mg of prednisone. Pain is much better but having dull headaches everyday. Have not been tested for GCA and don't know if I should ask my Dr. to test or wait. Not really sure if this is GCA or just headache. It is not specifically in my temple area and my vision is getting worse but think it is likely age related (but who knows). Anyone have specific info on symptoms .....?

Hi @lmdohrman, I was not diagnosed for a year. I think I had the pain of PMR for about 9-10 months, then it eased up, but new symptoms appeared, which were truly strange: short stabbing pains from my right ear to my nose, a tender scalp, torso itching, excruciating neck pain (I could not turn my head), a dry cough, especially at night, anorexia - no appetite or desire to eat, I was down to 93 pounds. I could not see out of my right eye a couple of times, had extreme sensitivity to the sun, and exhaustion after my daily walk (caused by anemia, "the anemia of chronic inflammation"). I also got shingles, even after having the shingrex vaccine a year prior. I had gagging attacks, which were spasmotic, 29 in nine months.

I had documented my symptoms, which I told the rheumatologist. On an intial dosage of about 10 mg for PMR, he said all my symptoms should be gone. Fortunately, the day before I spoke to him, I had 25 of those short stabbing pains in my face. He told me to start taking 40 mg of prednisone and ordered a temporal artery biopsy which was positive.

My mother-in-law had GCA in the mid 90s. I remember her symptoms being difficulty chewing, a headache, lethargy and night sweats.

Untreated, Giant Cell Arteritis can lead to blindness or a stroke. And if you ever have episodes of being unable to see, go to an emergency room as that needs immediate treatment. I was lucky not to damage my vision. I suggest you document your symptoms and bring them to your physician's attention. I think of GCA as a thief in the night, that comes and goes, with stealth attacks.

I'm down to 3 mg of Prednisone now and doing well.

I wish you the best, Teri

Hi @lmdohrmann, I would like to add my welcome to Connect along with Teri @tsc. I agree with Teri that you should document your symptoms and contact your doctor as soon as possible. My rheumatologist was always asking me if I had pain in the temples or scalp and if I was having any vision problems since he was worried about the possibility of GCA. Mayo Clinic has more information about the symptoms and causes here - https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758.

Are you able to contact your doctor and discuss the symtpoms and testing for GCA?

Hi all,
I was diagnosed in PMR in March after taking Lipitor for a month - it seemed to trigger the PMR. Once diagnosed I was started on Prednisone 20 mg OD and was doing a very slower taper. I reacted very positively to this dose. However, once I got down to 10 mg a day some mild symptoms returned and now that I am 9 mg OD much of the hip pain has returned. I called my rheumatologist and was told that I could go back up to 10 mg a day or as high as 11 mg a day. I am not sure such a mild increase will work - I was expecting to be put back up to 20 mg a day and then start slowly tapering again. What has your experience been if you developed fairly sever symptoms while tapering?

Hi @kimberlynitz66, Welcome to Connect. Tapering off of prednisone for PMR can be very difficult and needs to be slowly. Usually if my pain symptoms returned when I had tapered down, I tried upping the dosage by half of the previous taper so it was still less than the previous dose. Each of us are different but I think you are still early in your PMR being diagnosed in March. The first my PMR came out it took me 3 and half years to taper off. The second time 1 and half years. You will notice that we moved your post to an existing discussion on the same topic here:

-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

You might want to jump to the top of the discussion by clicking the link above and read through the posts of what others have shared to see if anything rings a bell for you. Do you keep a daily pain log and dosage to help you keep track of your tapering?

I was started at 20 mg and did well and was tapering (probably too fast I think) and flared. I went back (per rheumy's directions) to where I last was pain free which was 12 mg, so not all the way back to 20mg. For myself, I am realizing that my leg/hip picture is complicated and I can't use that pain to judge my PMR treatment. But my biceps tell a simpler story so I am following their lead, so to speak. At the moment I am pain free there.

Your initial dose of 20 mg is fairly typical. You seem to indicate that you immediately started tapering down. You might discuss this with your doctor, of course. But it's a good idea to go back to the last dose that you had NO pain. Then stay there for a couple of weeks. You should never taper if you are feeling any pain. Once you are feeling really well, you can begin your tapering again - slowly. If you go too fast, you will probably have pain again. You are not in a race. Just think about the tortoise and the hare. The tortoise wins in this race too!!