Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?

Posted by sallyann @sallyann, May 10, 2016

I was diagnosed with PMR 2 1/2 years ago. Steroids didn’t help now I’m on Methotrexate for a month. My EMG today was negative. I take Tramodsl, Motrin, and Tylenol to deal w the extreme pain. What do I do next? I’m 54 now.

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@noosat1

I was diagnosed with disease last December. First few doses of 20mg of prednisone like a miracle. Now I have tapered to 6mg a day and plan to go to 5 to-morrow, March 1st, and see how I do. I believe diet extremely important. To begin with no processed foods, now/very low sugar, lots of fresh veg and fruits. Also anti-inflammatory spices and herbs. You can find list on internet. John Bishop is good mentor/advisor.

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Thanks for your response/suggestions, noosat1. I know exactly how incredible it feels to have Prednisone work so well in literally 2 or 3 days. I should have tried to taper down like you are doing; I wish you well. I'm trying to adjust my diet. Everything I like seems to be on the AVOID list. 🙁

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I know, however, if you have the will power to resist, it becomes so much easier that after a while you don't even want it. Whatever it is.

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If Pred did not help, I think the PMR diagnosis needs to be re-examined.

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@carina

I was fascinated with your post. I am 73 and was diagnosed with PMR in 1999. I was put on Prednisone and, after a period of tapering, ended up with a daily dosage of 20 mgs. I remember vividly my Doctor saying that I would be on Prednisone the rest of my life. He also said that if I ever had a blinding headache, take as many Prednisone pills that I could hold in my hand and go straight to Emergency. This was alarming but also encouraging because it implied to me that Prednisone must be a relatively safe drug. From 1999 until 2017 I had been feeling fine, actually better than fine. In October 2017, my current doctor asked if I wanted a Flu Shot. I routinely have had Flu Shots and I said Sure! Within 3 days my left shoulder hurt. The kind of hurt where one can not get comfortable in bed. Three days later, that pain was gone and was replaced by a similar pain in my left hip. Three days later, that pain was gone and there was something wrong with my feet and calves. Both feet were slightly puffy and felt numb-ish. Both calves were very painful. And that is the same today… over a year later. My Doctor had ordered many blood tests, a chest Xray and an EKG. Everything appeared normal. He arranged appointments with a Physical Therapist/Pain Management Doctor and an Endocrinologist. The PT Doctor said that I was, in fact, very healthy. She also said that she didn't know what happened to my feet but that they would never get worse and that I would never need a cane or wheelchair. The Endocrinologist said that I likely had "Reactive Arthritis" and that, for my size, I was taking too much Prednisone for too long. He started a tapering program (roughly last summer) and in early Feb. 2019, I was completely off Prednisone. Since my legs continued to hurt and the pain had spread somewhat to my thighs, I could not identify any withdrawal symptoms. However now, 3 weeks after being off Prednisone, I feel those dreaded PMR symptoms coming back with a vengeance. I will be seeing my regular Doctor soon. What I appreciated about your post was the connection to the Flu Shot. I was convinced that my pain was triggered by the Flu Shot but almost everybody I mentioned it to scoffed at the notion. I feel vindicated, Itta! (Though still in pain!) I don't know what happened to my feet. I don't know what happened to my calves but I suspect poor circulation since I have noticed pitting edema around the ankles. I will be asking my Doctor if I should have an ultrasound of my legs and, of course, will return to some level of Prednisone help.

Anyway, I want to thank you for your post. This Forum has been a huge comfort for me.

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@carina – From Tinkerbell – I tapered off of Prednisone for GCA last October. The Neurologist at Mayo told be to be very careful about taking any vaccines. I had the flu shot in November and since then have had pain on the right side of my face. No one knows what is wrong with me. I told my husband I would never take another vaccine.

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@tinkerbell

@carina – From Tinkerbell – I tapered off of Prednisone for GCA last October. The Neurologist at Mayo told be to be very careful about taking any vaccines. I had the flu shot in November and since then have had pain on the right side of my face. No one knows what is wrong with me. I told my husband I would never take another vaccine.

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Thanks for sharing, @tinkerbell. I'm sorry you are suffering from pain on the right side of your face; it must be terrifying. I am assuming it was a reaction to the shot tho, of course, I don't know that for a fact. What you said to your husband is exactly what I tell everybody.

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I’m guessing that you don’t actually have PMR. Prednisolone is the only medication that takes the pain away and it will work if you are at the correct dose. Most start at 15mgs, but many like myself, at 20mgs. If it is PMR, you will feel relief quite quickly, in just a couple of days. It doesn’t “cure” the condition, but it treats the symptoms (pain) while PMR burns itself out, whenever that might be. Once on a dose that works for you, you can commence the long and slow taper to a dose that still works but is far less than the initial dose.

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Hi, does anyone post to this thread anymore? I would love to have an updated conversation.

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@asklizzie

Hi, does anyone post to this thread anymore? I would love to have an updated conversation.

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Hello @asklizzie, Welcome to Connect. Yes, there are a lot of us members who struggle with polymyalgia rheumatica (PMR). I have had 2 occurrences of PMR myself but it is currently in remission and has been for almost 2 years. My treatment for both occurrences was started at 20 mg prednisone. The first time it took me 3 years to taper off. The second time it took about a year and a half.

Have you been newly diagnosed with PMR?

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After tapering down to 6 mg daily of Prednisone and doing quite well (for 10 months) all of a sudden my fingers are very stiff. Toes and left foot are stiff with pain and seem to be swollen. Wrists exhibit slight swelling also though not particularly painful. Is this PMR?

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@maija

After tapering down to 6 mg daily of Prednisone and doing quite well (for 10 months) all of a sudden my fingers are very stiff. Toes and left foot are stiff with pain and seem to be swollen. Wrists exhibit slight swelling also though not particularly painful. Is this PMR?

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@maija, That's a great question. I did have some swelling/pain in my right foot during my first occurrence with PMR. It was caused by gout and I was given another medication to help get rid of the uric acid causing the issue. Are you able to ask your rheumatologist or doctor?

Sometimes when I was tapering down and the pain came back, I went to the previous dosage or increased the dosage by half of what I descreased it before the taper.

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@johnbishop

Hello @asklizzie, Welcome to Connect. Yes, there are a lot of us members who struggle with polymyalgia rheumatica (PMR). I have had 2 occurrences of PMR myself but it is currently in remission and has been for almost 2 years. My treatment for both occurrences was started at 20 mg prednisone. The first time it took me 3 years to taper off. The second time it took about a year and a half.

Have you been newly diagnosed with PMR?

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Hi john, thanks for reaching out to me. Yes, I was diagnosed officially this past November. I woke up one morning in October with this extreme pain in my lower back on both sides. I thought I was having sciatica issues like before but the pain was unfamiliar. This went on for a few weeks with the pain expanding to my shoulders, knees. Etc. I finally went to my primary for blood work. Weirdly for me, my panels were all negative for rheumatoid and other matters. My test result were fine, but, because my complaints were so familiar to my doctor, she pre diagnosed me with PMR and sent me to an RA specialist. My first visit with the RA was just a consult. She was hesitant to label my problem as PMR because I was too young as she said and don’t fit any of the demographics. See, I’m a 51 year old African American woman whose otherwise super healthy. They wanted me to take prednisone but I refused to do so until she officially diagnosed me. While waiting for my next appointment and results of additional blood work, I began to do more research on PMR and steroids and didn’t like what I saw. I don’t like the fact of getting my body conditioned to a drug like that. I have anxiety issues with steroids and just know it will require additional drugs and so forth. Anyway, I decided not to take the drugs and try other things for now. I have found that THC and CBD helps me a lot. I live in California where it’s legal so I’m able to try it without fear. I just wanted to connect with people like me because I don’t think outsiders truly understand. Not sure how long I will last without drugs but I’m willing to see. It’s super weird that I have it in the first place.
Thanks for listening.

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@asklizzie

Hi john, thanks for reaching out to me. Yes, I was diagnosed officially this past November. I woke up one morning in October with this extreme pain in my lower back on both sides. I thought I was having sciatica issues like before but the pain was unfamiliar. This went on for a few weeks with the pain expanding to my shoulders, knees. Etc. I finally went to my primary for blood work. Weirdly for me, my panels were all negative for rheumatoid and other matters. My test result were fine, but, because my complaints were so familiar to my doctor, she pre diagnosed me with PMR and sent me to an RA specialist. My first visit with the RA was just a consult. She was hesitant to label my problem as PMR because I was too young as she said and don’t fit any of the demographics. See, I’m a 51 year old African American woman whose otherwise super healthy. They wanted me to take prednisone but I refused to do so until she officially diagnosed me. While waiting for my next appointment and results of additional blood work, I began to do more research on PMR and steroids and didn’t like what I saw. I don’t like the fact of getting my body conditioned to a drug like that. I have anxiety issues with steroids and just know it will require additional drugs and so forth. Anyway, I decided not to take the drugs and try other things for now. I have found that THC and CBD helps me a lot. I live in California where it’s legal so I’m able to try it without fear. I just wanted to connect with people like me because I don’t think outsiders truly understand. Not sure how long I will last without drugs but I’m willing to see. It’s super weird that I have it in the first place.
Thanks for listening.

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Hi @asklizzie, I had the same concerns about taking prednisone but it just made me work harder to taper off as soon as possible. I have no medical training or background but I don't think THC or CBD does anything to address the cause of the pain. It just masks the pain so it's not as bad. The prednisone primarily (IMHO) addresses the inflammation which causes the pain. One of the other things I did to help was tried to eat healthier and more foods that are anti-inflammatory. Here's an article that provides information that may be helpful.

What to eat if you have polymyalgia rheumatica — https://www.medicalnewstoday.com/articles/321683.php#the-pmr-diet

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@johnbishop

Hi @asklizzie, I had the same concerns about taking prednisone but it just made me work harder to taper off as soon as possible. I have no medical training or background but I don't think THC or CBD does anything to address the cause of the pain. It just masks the pain so it's not as bad. The prednisone primarily (IMHO) addresses the inflammation which causes the pain. One of the other things I did to help was tried to eat healthier and more foods that are anti-inflammatory. Here's an article that provides information that may be helpful.

What to eat if you have polymyalgia rheumatica — https://www.medicalnewstoday.com/articles/321683.php#the-pmr-diet

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Thanks for the link. I will check it out. You are correct, THC and CBD only mask it but since there’s no cure, then we are all masking. I believe diet plays an important role.

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@asklizzie

Thanks for the link. I will check it out. You are correct, THC and CBD only mask it but since there’s no cure, then we are all masking. I believe diet plays an important role.

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Forgot to mention that one of the other things I do is take a tablespoon daily of liquid Turmeric (Qunol) which helps with inflammation.

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@johnbishop

Forgot to mention that one of the other things I do is take a tablespoon daily of liquid Turmeric (Qunol) which helps with inflammation.

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I will try the Tumeric. also, just read the article. All of my favorite foods are on the list. My only struggle will be alcohol and fries, lol. I can do it! Thanks so much for this.

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