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

what's the different medication you refer to that worked?

Hi Susan,
I agree this "new normal" is no fun. I am operating at about 30% of what I was 6-7 weeks ago. I just happened to see a rheumatologist last summer for my sjogrens, so I was able to get an appointment when this PMR beast hit me.

When I get close to the time to take my daily prednisone, I am hurting. I manage to get through the day (for the most part) but I, too, have pain all the time.

I'm curious to know from those who have tapered to below 5mg if they still experience pain and the limitations associated with this.

Hi Susan,
I agree this "new normal" is no fun. I am operating at about 30% of what I was 6-7 weeks ago. I just happened to see a rheumatologist last summer for my sjogrens, so I was able to get an appointment when this PMR beast hit me.

When I get close to the time to take my daily prednisone, I am hurting. I manage to get through the day (for the most part) but I, too, have pain all the time.

I'm curious to know from those who have tapered to below 5mg if they still experience pain and the limitations associated with this.

Hello sbhr, I was diagnosed with PMR 18 months ago and have tapered down to 2mg Prednisone. I have found that a very slow taper works for me, 1/2 mg at a time. I still have some stiffness in the mornings, but no pain. I'm hoping that my adrenals have become more responsible and are doing their job! My inflammation markers are all improving too. I was seeing a rheumatologist but my insurance company has just informed me that he is no longer in my network. Luckily, my GP is working with me on my tapering schedule and will order blood tests every three months to monitor my progress. I'm also fortunate that at 76 I have no underlying conditions to complicate things. I'm wondering what time of day you take your Prednisone. I have always taken it as early in the morning as possible and find that within a couple of hours the stiffness abates. I agree PMR isn't fun, but you could be dealing with much worse things. At least we have the possibility of remission. Good luck.

When I got down to 2mg last fall I had more stiffness at the back of my thighs and pain in both wrists. I take Tylenol ES when needed. It is manageable and I didn’t want to increase the prednisone. About 6 wks ago I went down to 1.5 mg and no new issues so now I’m going to reduce to 1 mg. I have been on Prednisone for 2 yrs.

My ophthalmologist didn't like me being on prednisone either. My intraocular pressures seemed to vary depending on my prednisone dose. Whenever my prednisone dose was 30 mg or more my eye pressures were 30 or more. My eye pressures were asymptomatic so I had no idea how high they were.

My ophthalmologist still wants to treat me for ocular hypertension even though I'm off prednisone. Cosopt drops twice a day have been ordered even though my eye pressures are almost normal now. She was very nice and begged me to do the eye drops. She said my eye pressures could damage my ocular nerve and it would be too late to do much about it.

I always thought it was strange that the medication prescribed for GCA to save vision could cause permanent eye damage. There truly needs to be better options available for people with PMR/GCA.

I have been taking Actemra (tocilizumab) for the last 4 years. I was able to taper off prednisone within a year after Actemra was started. An endocrinologist intervened and told me to stop tapering for about 6 months when adrenal insufficiency was diagnosed. You won't know how well your adrenals are functioning until you can maintain a prednisone dose of 3 mg for an extended period of time. Actemra allowed me to be able to stay on 3 mg for as long as it took.

Eventually, the endocrinologist told me to stop prednisone when my cortisol level was "adequate." That doctor said I could take prednisone again for any reason if I felt the need. However, she wanted to know if I had the need for prednisone preferably before taking it again. She didn't require that I notify her first.

I needed to stop Actemra a couple of times but not because of an infection or side effects. Uveitis is another autoimmune disorder that attacks my eye. After I got off prednisone the first time, my ophthalmologist nearly cried as she ordered 60 mg of prednisone again for uveitis.. Fortunately, the uveitis responded quickly and it went back into remission.

A different biologic called Humira (Adalimumab) was tried specifically to prevent uveitis from happening again. Unfortunately, my pain returned after about 2 months on Humira and I got stuck on 15 mg of prednisone again.

That was when my rheumatologist told me to pick which biologic worked best for me. I chose Actemra.

Interesting that your eyes had high pressure but no damage. Also interesting that your eyedrops helped you so much. Sadly, my eyes are very different and I have already lost some vision in my right eye. And I am 3 kind of drops and still higher than my doc would like. PMR is very much the wrong condition for me to have, seeing as how every doc agrees that steroid are the way to go. If anyone tries to get me cleared for Actemra, the insurance is going to have a hard time justifying a "no".

Hello sbhr, I was diagnosed with PMR 18 months ago and have tapered down to 2mg Prednisone. I have found that a very slow taper works for me, 1/2 mg at a time. I still have some stiffness in the mornings, but no pain. I'm hoping that my adrenals have become more responsible and are doing their job! My inflammation markers are all improving too. I was seeing a rheumatologist but my insurance company has just informed me that he is no longer in my network. Luckily, my GP is working with me on my tapering schedule and will order blood tests every three months to monitor my progress. I'm also fortunate that at 76 I have no underlying conditions to complicate things. I'm wondering what time of day you take your Prednisone. I have always taken it as early in the morning as possible and find that within a couple of hours the stiffness abates. I agree PMR isn't fun, but you could be dealing with much worse things. At least we have the possibility of remission. Good luck.

Did you have glaucoma before or after starting prednisone? If you had pre-existing glaucoma then prednisone isn't a good medication for you. It sounds like your ophthalmologist knows what he/she is talking about. It would be better if there was another option like Actemra for you.

My ophthalmologist wasn't too worried when I was taking "short term" prednisone for uveitis. The concern was when I was taking prednisone "long term" for PMR.

I had no idea what all prednisone was doing to my body. Fortunately, I was having frequent eye exams because of recurring uveitis. My ophthalmologist would prescribe 60 mg of prednisone to me in order to treat each uveitis when it occurred. I didn't need to take prednisone very long and I could taper off in a month or two. The uveitis would go back into remission again. I didn't need prednisone again for another year or so until uveitis recurred again. The whole process of taking high doses of prednisone and tapering off again was very routine to me. I needed to do it every year or so for uveitis long before PMR was diagnosed.

After PMR was diagnosed, I was taking prednisone daily for years. At doses less than 20 mg, my eye pressures didn't increase too much. When my prednisone dose was over 30 mg, my eye pressures would go higher. That was when my ophthalmologist would get worried that my eye pressures were getting too high. I couldn't decrease my prednisone dose that easily because of body pain. It would hurt everywhere.

Technically, I didn't have glaucoma and my ophthalmologist didn't call it glaucoma for many years. My intraocular pressures were high because of prednisone but my eye pressures would decrease again when my prednisone dose was lower.

After many, many years of taking prednisone for PMR, my ophthalmologist started saying that I have glaucoma. The cosopt eye drops to treat glaucoma help but I'm not so good about doing the drops all the time. That was why my ophthalmologist begged me to do the eye drops regularly.

My ophthalmologist referred me to the following article to read.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5577123/#:~:text=Steroid%2Dinduced%20ocular%20hypertension%20was,resulting%20in%20steroid%2Dinduced%20glaucoma.