PMR Anyone?

@denisecochran Wow, did they check you for Valley Fever in Arizona? It is a very common illness there that mimics muscle and joint disease. If they did not check, be sure that you get checked for it. It can make you very sick. Many tourists get it,since the bacteria live in the sand and are breathed in by people. Just a thought!

HI! I don't think they checked me for that since i went to the urgent care just 5 days after I arrived in AZ and the symptoms started as we were driving down there from MN

Hi my name is Roland & I have PMR I have had it for 15 months. I know you are frustrated about not being to get rid of your PMR. Now I don't know what your Dr. told you but there is no cure for PMR just pain treatment & try to work out every day. This is an autoimmune disease & it is suppose to go away by itself they say 1 to 3 years & maybe even a reoccurrence. I started with 20 mg/day of prednisone & am now stuck on 5 mg/day. My pain went away but right now it is in all my finger joints a little uncomfortable but it doesn't stop me from doing anything that I wish to do. Now with prednisone there are possible side effects & of course with all medications one takes. You have to start on a dose which controls your pain & very slowly decrease the dosage. You see with steroids taking an oral dose your body is tricked on not making it so you just cannot stop taking it all at once you have to wean yourself off the stuff. John Bishop is a good mentor on the PMR not a Dr. but a person that has had it so he is very knowledgeable on that subject. Don't give up your pain is treatable & along with plenty of exercise every day you should be okay.

Just being picky: but they’re not bacteria—they’re spores. And you’re right, valley fever can be lifeThreatening.C

Hi @gemmax, my first occurrence of PMR was back in 2007. A Mayo rheumatologist diagnosed my PMR and explained it to me that polymyalgia rheumatica (PMR) was basically arthritis all over the body in laymans terms. He also explained each of us is different. The way he explained it to me when he prescribed a starting dosage of 20 mg prednisone to treat it is the goal is to get the inflammation under control then once it's under control start decreasing or tapering the dosage of prednisone until you are able to get off of it with little or no pain or stiffness. My first occurrence took 3 years to taper off of prednisone and the last 6 months or so was going back and forth between 1 mg and 1/2 mg dosage. My PMR was in remission for 6 years and came back in 2016.

The second occurrence only lasted about a year and a half. I was able to taper off this past February. The difference in the two occurrences for me seemed to be better control of my diet and more exercise. Both of these were a lifestyle change due to other health problems -- small fiber peripheral neuropathy (SFPN). I found a book The Wahls Protocol by Dr. Terry Wahls that made me think more of what I'm putting into my body...either feeding the illness or helping reduce the symptoms (my words). I can tell you that my symptoms seem pretty much what you describe -- I can't walk very far, can't stand or sit very long and it is worse if I don't force myself to do some exercise. I don't do a lot. I ride my recumbent exercise bike for 30 minutes 4 or 5 mornings a week when I first get up. This helps me move OK the rest of the day. I still have to be careful standing up and taking those first few steps which is worse the longer I sit.

Mayo Clinic does have some information on PMR here:
-- https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

Arthritis.Org also has some good information on PMR here:
-- https://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/

Exercise is important but the key IMHO is to not over do it.

@gemmax it sounds like you have found a routine that minimizes and helps with your PMR. Have you tried any other treatments?

Hoping for a pain free day for my PMR friends.

John

@johnbishop Thank you for all of the information. I tried methotrexate for a few months but it was really hard on my gastro system. I have gasteoparesis with my diabetes, so many meds make me ill. At any rate I had to stop at the time when it should have just started to work. My rheumatologist wanted me to wait awhile and then try again. That would be in June of this year. I haven’t decided whether is worth it or not. Most meds for pain put me to sleep. even in small doses, something about that they enter my system too rapidly.. I have honestly learned to live with a lot of pain. I don’t allow myself to engage in self pity. I have known many others so much sicker than I am. I have so much to be thankful for. I will visit the links that you provided, Thanks again!

@ccunning thank you for the correction.

I had a private conversation with another member @alanbruce who was tapering off of prednisone and having some difficulties. He gave me permission to post our private conversation because I think a lot of us have been through what Alan is experiencing.

Alan's message to me:
John, I started Prednisone last August and tapered down to 1 August 1 and started getting wrist and shoulder pain a few weeks ago. MY Rheumatologist called me last week and told me that my CRP had gone up above normal range and suggest I go up to 5 until I see her this week. Hopefully I will be able to back down to 2 or 3 without waiting a month for each taper. I seem to remember you going up and down and may have experienced the same type of issues. I thought I was getting off Prednisone 1 September so it was a big disappointment.

My reply:
Hi Alan, we all are a little different when it comes to how PMR affects us. My first time it took 3 years to be able to taper off of prednisone. The second time it took a little less than 2 years. Both times I went back and forth with the dosage. The first time the last 6 months I was going between 1 and 1/2 mg dosage until I felt good at 1/2 and finally was able to stop taking prednisone and the pain was pretty much gone. 5 mg is a big jump from 1 mg. The wrist and shoulder pain are an indicator of the PMR. I can't give advice but what I my Rheumatologist suggested was to just go up a little if I started hurting. So I had the 1 mg tablets and just would bump up the dose by 1 mg for 2 to 3 days to see if the pain would go away. If the pain went away I would go down again by 1 mg or a few times I split the 1 mg tablet and went down by 1/2 mg until I could go to the previous dosage. You might want to run it by your Rheumatologist first. I know there are different tapering schedules but everyone is different so if somethings works for you that's what I would want to do. I have been in your shoes a couple of times and it definitely is disappointing but don't give up. Just keep taking it one day at a time.

So, if you have had problems with the pain coming back when trying to taper off of prednisone, we would love to hear about your experience and how/if you were able to taper off of the drug.

John

Hello, I am writing to you, John, because you are a leader 🙂 I was diagnosed a couple of months ago with PMR, eventually I found this forum and have been very interested in the postings. They have given me a lot of information. At first I was misdiagnosed and given antibiotics which simply got rid of the good bugs in my system. Also I had shingles, with delay diagnosis, because I thought I had been bitten by a bug or spider. (I am outdoors a lot in wooded areas) My doctor started me on 3 days of 40mg. of prednisone, then to continue with 20mg. After 10 days of this, I lowered myself to 5mg as I had dizzy spells, fatigue. After 10 days of 5, I lowered it to 2.5mg. Starting to=day I am going to try to not take any and see what happens. I am doing this because I am trying to protect eyes and heart. This is my background - on the 17th January I will turn 91. Almost 4 yrs ago I had double by-pass surgery. My heart attack was a surprise to all, including my general physician. Until that time I played tennis, pickle ball and did Zumba. Until the mid 70s I was an active runner, mostly 10K and half marathons.

One of the things I am concentrating on now is diet. My normal diet is mainly vegetarian. I've continued this, but even watched it more carefully. Practically no processed food, especially sugar, organic vegetables and fruits, nuts, yogurt. I can really tell the difference when I eat "correctly" and when I slip - less pain and more energy. I am trying to be realistic. I do not expect to be free of pain as it is part of life, but to have pain at a manageable level for quality of life. It is encouraging to read about people who have flair ups, but manage to get back to lower doses.

Maggie T

Hello Maggie @noosat1, welcome to Mayo Clinic Connect. Thank you for sharing with us. Also, thanks for the kind words but I'm just a patient like you. I am fortunate enough to be a volunteer mentor to help folks find their way around Connect and share my experiences and treatments - which hopefully help other members. One of the good things about Connect is it will help you learn more about your condition and at the same time help you become a better advocate for your health. It sounds like you have a lot of those traits now with good understanding and expectations of managing your lifestyle and quality of life...much better than myself.

May I ask if you mentioned to your doctor about having dizzy spells and fatigue? It might be a good idea to discuss your plans with your doctor to keep them in the loop.

John

P.S. - Just in case you need a little positive energy, one of my favorite sites has short videos that are really uplifting.
-- https://www.resilientoption.com/