Diagnosed PMR and immediate pain relief

Posted by bugfen @bugfen, 3 days ago

Woke one morning and every joint in my body hurt. When to rheumatologist and he said I was classic PMR and prescribed prednisone 5mg twice a day. Twenty for hours later I had no pain whatsoever so I thought this was a miracle drug. That was 4 months ago and still no pain and he lowered dose 1mg every 30 days. Side effects of hair and beard grow very slow, pupura that is slow to dissipate , small sores under 5 that are slow to heal, fatigue and some dizziness at times. Blood pressure is good but at times drops under 100/….. so I have to question the diagnosis and or the medication. Have to trust doctor but question why not another drug that doesn’t encumber one so much. He said if I stop I have 70% chance of having pain again. I’m 79, golf, semi active and never took pills for ANYTHING before this. Anyone have immediate results as I did and are still locked in to continuing pill taking or same side effects..??

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

My first time with PMR was not a sudden waking one morning with the hurting all over pain but when I finally went to a rheumatologist about 3 months later (in a wheel chair), the relief was within a few hours of taking my first 20 mg dose of prednisone and lasted until the pain kicked up a bit the next morning and I took the next dose. It took me 3 and half years for the PMR to get to remission so that I could stop the prednisone. I'm sure it can be quite different for each of us. There are other conditions that have symptoms that mimic PMR and normally when prednisone stops the pain, it's a sign that the diagnosis of PMR is correct. Here's some information on the other conditions that are similar.
-- Diseases that mimic polymyalgia rheumatica (PMR):
https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica
You might find another discussion by @dadcue helpful:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/

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I have GCA and PMR. I got relief immediately from prednisone, but I started at 60 mg per day.

10 mg is a low starting dose for PMR. You were lucky in that regard. Some people have to start at 25 mg or higher.

Prednisone causes higher blood pressure in a lot of people. I've been lucky in that area. My blood pressure goes below 100 fairly often, and that seems like a sign of good health to me. I feel ok when it is that low.

There are other drugs for PMR, but they have their own risks. Methotrexate can cause gastrointestinal problems and liver damage. Kevzara can cause gastrointestinal perforations and increases the risk of serious infections. Kevzara is normally administered through self-injections every 2 weeks, and is expensive, even if it is covered by insurance. But if you have trouble getting off of prednisone, your doctor might want you to try one of those drugs.

Most people in this forum were very active before becoming sick with PMR and or GCA. Those illnesses are caused by an overly active immune system.

Since you have PMR, you should know that 10 - 20 percent of people with PMR also develop GCA, which is an illness where the body attacks its own arteries, usually in the head. If you develop new headaches, scalp tenderness, weight loss, night sweats, or fatigue in your jaw muscles when you're chewing food, let your doctor know immediately. If you have sudden vision changes, like temporary loss of vision, double vision, smearing of colors, etc, go to the emergency room.

A lot of people recover from PMR in a year or two. You can stop taking prednisone after it burns itself out. But the PMR can get worse (flare) if you taper the prednisone too quickly, and it can also come back at some point after you recover. But some people have to keep taking prednisone or one of the other drugs for many years, like 15 years or more.

I'm sorry you have PMR, but the people on this forum have a lot of experience with it and can tell you about dealing with prednisone and the other drugs they take for it.

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bugfen--Like you I am new to PMR. Last Nov. or Dec. I started having pain in my back. Following a visit to my primary care doctor I went to physical therapy and she detected a pinched nerve. I was relieved after 3 sessions but then I started getting pain in my shoulders during the night. It got worse and worse and no pain relievers helped. My primary care doctors ordered tests but nothing showed up. The pain was sort of alarming because I couldn't get relief. If I stayed flat in bed and didn't move I could sleep but if I rolled over the pain brought tears to my eyes. It started lingering longer in the morning and was so bad I couldn't lift a cup of coffee. I am 77 and fairly active. I swim and do weight machines--neither really intense but I was doing them. I stopped the weight machines but continued water exercises several times a week --but not using my shoulders. When diagnosed I was put on prednisone and had immediate relief. That was in Feb. After 1 round that was just a week the pain returned and I was put on 30mg. I have now reduced to 5mg and I see my rheumatologist next month. I am back to being active and feel fine. My side effects have been slight elevation in blood pressure but not too bad, easily bleed under skin on arms, sleep difficulties, moon face, and weight gain that bothers me a lot. I was also diagnosed with a rather rare slow progressing type of leukemia associated with rheumatic arthritis. I will be interested to see what my rheumatologist has to say on the next visit. I would like to get off prednisone --I have been on for 6 months---but when I read other people's stories on this forum,, I realize I could be on it for longer.

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My first answer was rather short. This site is very helpful. You will realize that everyone is different. Many will come up with other auto immunes or have others already. There is no one set of answers. But keep educating yourself and asking questions you will become an advocate for yourself. My PMR did burn out in 6 months. I had two flares that were easily treated in the first year. I have had no symptoms the last 3 years. The sooner you can be off prednisone the better or at least more normal your health will become. Although at 73 , while I am still very active as yourself, it is not getting any easier.

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Profile picture for csimmonds @csimmonds

bugfen--Like you I am new to PMR. Last Nov. or Dec. I started having pain in my back. Following a visit to my primary care doctor I went to physical therapy and she detected a pinched nerve. I was relieved after 3 sessions but then I started getting pain in my shoulders during the night. It got worse and worse and no pain relievers helped. My primary care doctors ordered tests but nothing showed up. The pain was sort of alarming because I couldn't get relief. If I stayed flat in bed and didn't move I could sleep but if I rolled over the pain brought tears to my eyes. It started lingering longer in the morning and was so bad I couldn't lift a cup of coffee. I am 77 and fairly active. I swim and do weight machines--neither really intense but I was doing them. I stopped the weight machines but continued water exercises several times a week --but not using my shoulders. When diagnosed I was put on prednisone and had immediate relief. That was in Feb. After 1 round that was just a week the pain returned and I was put on 30mg. I have now reduced to 5mg and I see my rheumatologist next month. I am back to being active and feel fine. My side effects have been slight elevation in blood pressure but not too bad, easily bleed under skin on arms, sleep difficulties, moon face, and weight gain that bothers me a lot. I was also diagnosed with a rather rare slow progressing type of leukemia associated with rheumatic arthritis. I will be interested to see what my rheumatologist has to say on the next visit. I would like to get off prednisone --I have been on for 6 months---but when I read other people's stories on this forum,, I realize I could be on it for longer.

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For what it's worth my moon face and the small amount of weight that I gained started fading away around 7 mg of prednisone, and were gone by the time I got down to 2 or 3 mg. My metabolism changed quite a bit too during the time. While I was on higher doses of prednisone my metabolism slowed down a lot and I gained fat in my face and belly. Now my metabolism is back to where it used to be.

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"Have to trust doctor but question why not another drug that doesn’t encumber one so much."
-----------------------
By default, Prednisone is considered to be the best option for PMR. Until recently, Prednisone was considered to be the "only option." To compound the problem, most patients including myself believed the same.

With 12 years of PMR experience, I struggled and struggled to taper off prednisone until my rheumatologist asked me if I would be willing to try Actemra (tocilizumab). I almost declined Actemra because someone discouraged it. My rheumatologist said I wouldn't know if Actemra worked or not unless I tried it to see. My rheumatologist made sense to me because the other person had no personal experience with Actemra.

Now I'm happy to do a monthly Actemra infusion. My biggest regret is that Actemra wasn't tried sooner. Nevertheless, I am happy that my rheumatologist convinced me to try Actemra.

I'm stuck on a monthly Actemra infusion but at least I no longer have symptoms of PMR. I don't have any side effects to speak of from Actemra. I have mostly recovered from the long term effects of Prednisone. I no longer believe that Prednisone is the best and only option for PMR. Until that mentally changes --- nothing will change.

There also needs to be a better way to diagnose PMR before sending patients down the road of "long term" prednisone use. I have learned there is no easy way to get off that highway because the next exit might be a long time. Then the deathly fatigue sets in and you run out of gas.

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Profile picture for tuckerp @tuckerp

My first answer was rather short. This site is very helpful. You will realize that everyone is different. Many will come up with other auto immunes or have others already. There is no one set of answers. But keep educating yourself and asking questions you will become an advocate for yourself. My PMR did burn out in 6 months. I had two flares that were easily treated in the first year. I have had no symptoms the last 3 years. The sooner you can be off prednisone the better or at least more normal your health will become. Although at 73 , while I am still very active as yourself, it is not getting any easier.

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I’ve had PMR for 3.5 years and am down to 1 and 2 mg prednisone alternating days. Will soon try for 1.5 mg each day. Am also on Actemra (a real game changer). To everyone here: this site has been so helpful you can’t imagine. I was all alone 3.5 years ago and now thanks to you all I have great resources great references and can ask my doctor about options on treatments. Thank you all.

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I was on and off prednisone for 35 years mostly on. On Kevlar now for 7 months down to 2.5 prednisone goal is 0.

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Profile picture for Mike @dadcue

"Have to trust doctor but question why not another drug that doesn’t encumber one so much."
-----------------------
By default, Prednisone is considered to be the best option for PMR. Until recently, Prednisone was considered to be the "only option." To compound the problem, most patients including myself believed the same.

With 12 years of PMR experience, I struggled and struggled to taper off prednisone until my rheumatologist asked me if I would be willing to try Actemra (tocilizumab). I almost declined Actemra because someone discouraged it. My rheumatologist said I wouldn't know if Actemra worked or not unless I tried it to see. My rheumatologist made sense to me because the other person had no personal experience with Actemra.

Now I'm happy to do a monthly Actemra infusion. My biggest regret is that Actemra wasn't tried sooner. Nevertheless, I am happy that my rheumatologist convinced me to try Actemra.

I'm stuck on a monthly Actemra infusion but at least I no longer have symptoms of PMR. I don't have any side effects to speak of from Actemra. I have mostly recovered from the long term effects of Prednisone. I no longer believe that Prednisone is the best and only option for PMR. Until that mentally changes --- nothing will change.

There also needs to be a better way to diagnose PMR before sending patients down the road of "long term" prednisone use. I have learned there is no easy way to get off that highway because the next exit might be a long time. Then the deathly fatigue sets in and you run out of gas.

Jump to this post

We’re you having pain those 12 years

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