Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

THIS IS THE NEW APPROACH TO START HIGH AND TAPER DOWN SLOWLY WITH THE DOSES.

Good Luck! I also was started on 60 mg almost 1 year ago. I could hardly believe that I felt like a new creation in less that 24 hours. I am currently on 6 mg each morning. On March 1 will decrease to 5 mg using the dead slow, nearly stop protocol. When I get to new dose every day I will check with my rheumatologist and we will decide if I should remain on the lower (5mg) for a week (or more) prior to
decreasing to 4 mg. I will keep you posted on my progress. Thanks again for this opportunity to share good stories and some of those
problems that seem to "come and go."

THANKS FOR THE SUPPORT!! I WAS OUT IN MY GARDEN THIS AFTERNOON, LOVED IT!!😍

Hello, I have been reading the descriptions of everyone’s journey with PMR.

I am 73 and have always been very active until last August when I began to experience incredible stiffness in the morning.… then pain in my neck, shoulders and groin and thighs. I joked that I must have fibromyalgia! I was a runner and running became increasingly difficult with swelling and pain in my right knee. The health professionals wanted to know what I did to my knee. I told them “nothing” and that running started being a problem because of neck and shoulder pain. Of course, the knee became the focus of treatment and it was drained and injected with steroids.

In November, I started physical therapy and began daily exercises which were exhausting, although not even that strenuous. I was treated for rotator cuff and hip flexor issues…all viewed as collateral problems from limping around on a bad knee. The therapist advised me not to anything until the inflammation died down. I could not reach above my waist and getting in and out a car, or moving in bed was excruciatingly difficult. Inflammation?!!

Finally, I did a google search for neck, shoulder and hip pain.…and bingo! Here we are. I made an appointment with my PCP. My sed rate and C-reactive protein were markedly elevated. I was started on 15 mg of prednisone which didn’t work and was increased to 20 mg. Tapered to 17.50 mg without success. Alternating 20 and 17.5 also, without success. I am feeling like I might try 17.5 again since I am feeling pretty good.

I am following a strict diet of no sugar, high protein, low salt and 1300 calories a day. I take turmeric, boswelia extract, magnesium and collagen. I had a cheat day last weekend. The sticky steamed rice, apple cider and popcorn? affected me for 2 days! So, I believe diet is important! Before watching my calories, I had gained 4 pounds, that are now gone. I do tire with exertion, but rest and stay active alternately.

Luckily my life, otherwise, is stress free. I am waiting for a rheumatologist appointment, but UVA is not taking new patients and I may have to travel to Richmond, but no word on that yet.

I am also on levothyroxine, which was decreased at the same time. I was keeping my TSH on the low side when I felt great. But now I wonder if that may have triggered this inflammatory response in my body.

Thank-you, for this helpful, informative and supportive group!
Jill

Hello, I have been reading the descriptions of everyone’s journey with PMR.

I am 73 and have always been very active until last August when I began to experience incredible stiffness in the morning.… then pain in my neck, shoulders and groin and thighs. I joked that I must have fibromyalgia! I was a runner and running became increasingly difficult with swelling and pain in my right knee. The health professionals wanted to know what I did to my knee. I told them “nothing” and that running started being a problem because of neck and shoulder pain. Of course, the knee became the focus of treatment and it was drained and injected with steroids.

In November, I started physical therapy and began daily exercises which were exhausting, although not even that strenuous. I was treated for rotator cuff and hip flexor issues…all viewed as collateral problems from limping around on a bad knee. The therapist advised me not to anything until the inflammation died down. I could not reach above my waist and getting in and out a car, or moving in bed was excruciatingly difficult. Inflammation?!!

Finally, I did a google search for neck, shoulder and hip pain.…and bingo! Here we are. I made an appointment with my PCP. My sed rate and C-reactive protein were markedly elevated. I was started on 15 mg of prednisone which didn’t work and was increased to 20 mg. Tapered to 17.50 mg without success. Alternating 20 and 17.5 also, without success. I am feeling like I might try 17.5 again since I am feeling pretty good.

I am following a strict diet of no sugar, high protein, low salt and 1300 calories a day. I take turmeric, boswelia extract, magnesium and collagen. I had a cheat day last weekend. The sticky steamed rice, apple cider and popcorn? affected me for 2 days! So, I believe diet is important! Before watching my calories, I had gained 4 pounds, that are now gone. I do tire with exertion, but rest and stay active alternately.

Luckily my life, otherwise, is stress free. I am waiting for a rheumatologist appointment, but UVA is not taking new patients and I may have to travel to Richmond, but no word on that yet.

I am also on levothyroxine, which was decreased at the same time. I was keeping my TSH on the low side when I felt great. But now I wonder if that may have triggered this inflammatory response in my body.

Thank-you, for this helpful, informative and supportive group!
Jill

Hi Jill @jth4d, I would like to add my welcome to Connect along with the other members of this discussion. As @maija said, yours is indeed a familiar story. When I was diagnosed I also had swelling in my right knee and fluid was drained and I received a steroid shot. I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

Good for you on the diet, I think diet plays a big part. Also, one of the bad side effects for me of the prednisone was weight gain. Staying active helps. You mentioned going back from 17.5 mg to 20 mg and are now feeling good again. You might want to see if you can get some 1 mg tablets which I found quite helpful when tapering down. Then if you are really hurting when you drop to 17.5 bump it up by 1 mg to see if the pain goes away instead of all the way back to 20 mg. My rheumatologist was really helpful for me with tapering suggestions. Has your doctor given you any tapering suggestions?

Her only suggestion was alternate doses between 20 and 17.5 daily. I only have 5 mg tablets. I will ask her for some one mg tabs. Thanks again!

Did you have any blood tests during your treatment? Are there recommendations for blood work?