New Diagnosis of Polymyalgia Rheumatica (Husband)

Posted by Dee @danielad, Aug 8, 2018

Hello Justin and all!

I am new in this group and would appreciate your advices on the subject of Polymyalgia Rheumatica (PMR). My husband, John has FINALLY been diagnosed with this disease last week. I did research every respectable website and found a number of articles and past studies as well. Now I need “human interaction”; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John’s story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be “Charcot-Marie-Tooth, type 2A” (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of sensory perception. In spite of that, he has learned to walk and drive by “feeling” via the muscles in the thigh and his knees.

In any event, I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he says he feels “weak and unsteady”. Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, he doesn’t know “what” is not working — The muscles in the lower/upper legs? Knees? Feet? It certainly isn’t easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don’t go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a “MIRACLE” medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for “reading” this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

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

Hi @jayflo,

I moved your discussion and combined it with this existing discussion, so that you can connect with members who’ve discussed Actemra/Tocilizumabon.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members.

May I ask if you’ve started the medication?

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So sorry to hear this. I know the pain can be excruciating. I find a very, vry hot shower each morning with the spray directed at my lower back, hips and upper legs helps with flexibility and pain.

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I was diagnosed a little over a year ago with polymyalgia rheumatica. I started out at 20 mg prednisone a day. Have been on a regimen of decreasing 1 mg a month. 3 months ago they added methotrexate. As I get down to 7 mg a day I start to get muscle aches and pain back. They have pushed me back up to 10 mg a day and started back down 1 mg a day. I am now back down to 7 and have some mild pain some days. I also have tumid lupus that I have been treating for the past 10 years seeing 5 different dermatologists ending up at Mayo with them confirming that it truly is tumid lupus. Dr.s not sure if the two are related. I am on methotrexate as a way of weaning me off the prednisone.

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@billjan

I was diagnosed a little over a year ago with polymyalgia rheumatica. I started out at 20 mg prednisone a day. Have been on a regimen of decreasing 1 mg a month. 3 months ago they added methotrexate. As I get down to 7 mg a day I start to get muscle aches and pain back. They have pushed me back up to 10 mg a day and started back down 1 mg a day. I am now back down to 7 and have some mild pain some days. I also have tumid lupus that I have been treating for the past 10 years seeing 5 different dermatologists ending up at Mayo with them confirming that it truly is tumid lupus. Dr.s not sure if the two are related. I am on methotrexate as a way of weaning me off the prednisone.

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Hello, my name is Beryl……I too used to have a hot shower straight from bed …..it helps me when I could hardly move ….had PMR all over my body ……terrible…….I also found a hot pad under the bottom sheet very helpful…..try to,find,one that is not plastic they are better and don't get so hot ……get the one that switches off after an hour …..you can if you think it better get ones that stay on until you switch it off …….good luck and keep talking to us between us we have a lot of experience …….Beryl

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Thanks for encouragement ! I also have osteoarthritis so I try not no always think it is PMR as I can manage osteo with Tylenol. I also think it helps to keep busy. I do quite a bit of volunteer work at the library and the nature center, also go to weekly book club. Anything to help keep my mind off my body 🙂 My daughter who lives very close to me is a big help. Most Saturdays we go art galleries etc. and have lunch/snack out. If the weather is decent I take Lily/dog to park where I can walk, slowly, along the river while she runs, plays and swims. Hope all is looking up for you

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@noosat1

Thanks for encouragement ! I also have osteoarthritis so I try not no always think it is PMR as I can manage osteo with Tylenol. I also think it helps to keep busy. I do quite a bit of volunteer work at the library and the nature center, also go to weekly book club. Anything to help keep my mind off my body 🙂 My daughter who lives very close to me is a big help. Most Saturdays we go art galleries etc. and have lunch/snack out. If the weather is decent I take Lily/dog to park where I can walk, slowly, along the river while she runs, plays and swims. Hope all is looking up for you

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You are not alone I too have osteoarthritis …..aren't we lucky….😘😉🤓🤗. Beryl

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@beryl

You are not alone I too have osteoarthritis …..aren't we lucky….😘😉🤓🤗. Beryl

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Yes we are…☺ I would do a happy dance but my osteoarthritis, degenerative arthritic knees say that's a no-no and my PMR has no say so right now, he's in remission.

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@johnbishop

Yes we are…☺ I would do a happy dance but my osteoarthritis, degenerative arthritic knees say that's a no-no and my PMR has no say so right now, he's in remission.

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John I like,that remission bit !…..👍😀

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I am new to the group also. So happy to have this forum! In early July, 2018, I had acute, bilateral joint pain in all joints except ankles and feet. It became nearly incapacitating until my primary internist diagnosed me with RA. This was based on symptoms, RA factor of 14 and high C reactive protein levels. I was started on Methotrexate and later he added Prednisone, which I was on and off. I was finally referred to a Rheumatologist in mid December. I tried to get into Jax Mayo but was told they weren’t accepting out patients. The Rheumatologist told me I did not have RA as I had had no swelling and the the RA factor was low. He said I have PMR. So he discontinued the Methotrexate and had me follow the following protocol with Prednisone: 10 mg for 4 weeks, 7.5 for 2 weeks, 5 for 2 weeks, 2.5 for 2 weeks, then stop, if all was well. Twice, I made it to 5 mg, but each time as I worked more, I had to fo back to 7.5. This last time the pain returned after 2 hours of intense, hands on CPR training. I am a 68 year old female. I work PRN as a Speech Pathologist in an inpatient rehab hospital. My challenges are transferring patients, pushing wheel chairs and putting the leg rests on wheel chairs. I too have had significant hair loss, much after I stopped Methotrexate, bruising, red splotches and streaks on my arms and loose stools several times a day. I began my journey doing the Plant Paradox Elimination Diet for 5 weeks. I kept a food, exercise meds and pain log. It do think certain foods, especially, night shades exacerbate, my problem. Any thoughts would be greatly appreciated.

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@gll104

I am new to the group also. So happy to have this forum! In early July, 2018, I had acute, bilateral joint pain in all joints except ankles and feet. It became nearly incapacitating until my primary internist diagnosed me with RA. This was based on symptoms, RA factor of 14 and high C reactive protein levels. I was started on Methotrexate and later he added Prednisone, which I was on and off. I was finally referred to a Rheumatologist in mid December. I tried to get into Jax Mayo but was told they weren’t accepting out patients. The Rheumatologist told me I did not have RA as I had had no swelling and the the RA factor was low. He said I have PMR. So he discontinued the Methotrexate and had me follow the following protocol with Prednisone: 10 mg for 4 weeks, 7.5 for 2 weeks, 5 for 2 weeks, 2.5 for 2 weeks, then stop, if all was well. Twice, I made it to 5 mg, but each time as I worked more, I had to fo back to 7.5. This last time the pain returned after 2 hours of intense, hands on CPR training. I am a 68 year old female. I work PRN as a Speech Pathologist in an inpatient rehab hospital. My challenges are transferring patients, pushing wheel chairs and putting the leg rests on wheel chairs. I too have had significant hair loss, much after I stopped Methotrexate, bruising, red splotches and streaks on my arms and loose stools several times a day. I began my journey doing the Plant Paradox Elimination Diet for 5 weeks. I kept a food, exercise meds and pain log. It do think certain foods, especially, night shades exacerbate, my problem. Any thoughts would be greatly appreciated.

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Hello @gll104, welcome to Connect. I have no medical training or background but I have had 2 occurrences of polymyalgia rheumatica (PMR) which is currently in remission. The first occurrence was in 2007 and lasted until 2010. My rheumatologist started me on 20 mg of prednisone with the goal of gradually tapering off at my own pace…whatever works for my body. He did say everyone is different with the disease and some never get off of prednisone but should always have the goal of trying to get off. I tried to taper down too fast the first few times and then gradually reduced the amount of the dosage. The last six months or so of my first round with PMR I went between 1 mg and 1/2 mg every week until I was finally able to stop taking it and only had a minimal amount of pain/discomfort. My second occurrence only lasted 1-1/2 years and I was able to taper a little faster except the last few months and it was instant replay of my first occurrence of PMR.

It's good that you are keeping a log. I think that helps. I know night shades are not good for me also but I would continue to eat them just a less amount. I think methotrexate is used for PMR when there may be other considerations.

Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica
https://www.practicalpainmanagement.com/pain/myofascial/inflammatory-arthritis/latest-advances-diagnosis-treatment-polymyalgia-rheumatica?page=0,1

It sounds like you get a lot of exercise with your job. Do your symptoms flare up more on a day where you are more active? I'm just thinking back on my two occurrences of PMR and know that I sometimes would over do it and would pay for it that night or the next day.

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