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.

@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

Jump to this post

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

REPLY
@beryl

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

Jump to this post

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.

Liked by Dee, beryl

REPLY
@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.

Jump to this post

John I like,that remission bit !…..👍😀

REPLY

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.

Liked by Dee

REPLY
@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.

Jump to this post

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.

Liked by Dee

REPLY

I am happy to find this group and would like to know how to manage my PMR which after several months, a week in the hospital and many doctors. My primary care doctor is the one who diagnosed me. I had so many different diagnoses while in the hospital seeing a number of different doctors with different specialties. When released, I was released with a diagnosis of Inflammatory Arthritis. The first Rheumatologist I went to stated that I needed a hip replacement and needed it right away. This without an examination. I did see another one after a few months of frustration and suffering with pain that would not go away. After being diagnosed, I went on Prednisone starting with 15 mg and gradually reducing the amount until I was at 2-1/2 and after being on that mg for about three weeks. I had been doing well and now find that the pain is starting in my left arm and the muscle above my elbow feels like it has electrical current going through it. I am also experiencing problems with other areas of my body. I will be seeing my doctor in the next few weeks and likely start on Prednisone again. While I know there is danger in taking steroids; as a 79 year old female soon to be 80, I will take my chances on side effects to have relief. I too, noticed almost immediate relief after starting the Prednisone. I would be interested in hearing how others are effected with this awful pain and how they get relief without being on Prednisone.

Liked by Dee

REPLY

Hi @frane1939, I've had 2 occurrences of PMR which is now in remission. The only relief I had for both occurrences was the prednisone. The first time I was able to taper off in 3 years. Then it came out of remission 6 years later and I was able to taper off of prednisone in about a year and half. I know that exercise of some sort plays a big part in helping control the PMR. I think a healthy diet is also part of controlling it. The key thing for me when tapering off of prednisone was going slow and accepting a small amount of pain during the tapering process….but if it hurt too much I bumped up the dosage to the previous one for a few days. My rheumatologist was a big help with the tapering schedule and tips. I also had some pain in my arm that felt similar to what you described. I'm a side sleeper and chalked a lot of it off to compressing a nerve when laying on the arm or having it under my pillow. I also have carpal tunnel which I think may also cause similar symptoms.

Here's a few ideas that may help…

What to eat if you have polymyalgia rheumatica
https://www.medicalnewstoday.com/articles/321683.php

3 Strategies for Coping with Polymyalgia Rheumatica (PMR)
https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

John

Liked by Dee

REPLY

I am fairly new to this disease, diagnosed last December, SED rate 57. After 2 months of prednisone it was down to 26, My doctor wants it below 20. I started on 40mg of prednisone for 3 days and then down to 20mg. I have been tapering down since then. I found that the unpleasant things happening to my body were not just from the disease, but also side effects of the prednisone. I concentrate on diet, no sugar, extremely small amount of processed food, 2 slices of good bakery bread for morning toast, lots of fresh vegetables and fruit (organic) and anti-inflammation herbs and spices. I had no direction on tapering. I went down fairly fast to 10mg. After that I have tapered .5mg periodically, depends how I am doing. Two days ago I started on 3mg., 2 in morning 1 in evening. Morning stiffness and some incipient early morning leg cramping, but nothing unbearable, not like the original pain. Don't know if any of this helps you, as we are all different, especially in what we conceive as "pain." I can live with a certain level of discomfit, If I can stop taking prednisone, which is definitely not good for my eyes and heart. Lots of luck on your research and treatment. Maggie T :).

REPLY
@noosat1

I am fairly new to this disease, diagnosed last December, SED rate 57. After 2 months of prednisone it was down to 26, My doctor wants it below 20. I started on 40mg of prednisone for 3 days and then down to 20mg. I have been tapering down since then. I found that the unpleasant things happening to my body were not just from the disease, but also side effects of the prednisone. I concentrate on diet, no sugar, extremely small amount of processed food, 2 slices of good bakery bread for morning toast, lots of fresh vegetables and fruit (organic) and anti-inflammation herbs and spices. I had no direction on tapering. I went down fairly fast to 10mg. After that I have tapered .5mg periodically, depends how I am doing. Two days ago I started on 3mg., 2 in morning 1 in evening. Morning stiffness and some incipient early morning leg cramping, but nothing unbearable, not like the original pain. Don't know if any of this helps you, as we are all different, especially in what we conceive as "pain." I can live with a certain level of discomfit, If I can stop taking prednisone, which is definitely not good for my eyes and heart. Lots of luck on your research and treatment. Maggie T :).

Jump to this post

@noosat1…I too am fairly new to PMR…diagnosed last Oct. been on Prednisone, starting at 20 mgms, then on 30, now down to 10. Could you tell me some of the ‘unpleasant’ things that were/are happening to your body. I have fallen twice and now my balance is ‘the pits’. Can handle the hair loss, the weight gain, personality change, etc., but seem to be in a brain ‘fog’ most of the time! I have glaucoma as well and my vision has deteriorated. All in all, I guess I just want to know if I’m on the right track. John has been very helpful, but I have not been back to him lately. Sorry, John. Will try to do better!!

Liked by Dee

REPLY

My name is @beryl and I empathize with everything you are saying it's all very frustrating and it isant like most things that just get better after a while you have to work at it and try to keep your chin up …..attitude helps a lot …..if you can only think to yourself that you are not the only one going through this PMR fight there are lots of us …..that's why it is good to talk to others that are going through the same thing …..well I am not suffering from glaucoma but have GCA in remission …..
John is very good and kind to help us in the way he does and we are all I am sure very grateful to him …..so keep talking it unfreaks you ….ha ha ……so good luck …..Beryl

Liked by Dee

REPLY
@dreamer38

@noosat1…I too am fairly new to PMR…diagnosed last Oct. been on Prednisone, starting at 20 mgms, then on 30, now down to 10. Could you tell me some of the ‘unpleasant’ things that were/are happening to your body. I have fallen twice and now my balance is ‘the pits’. Can handle the hair loss, the weight gain, personality change, etc., but seem to be in a brain ‘fog’ most of the time! I have glaucoma as well and my vision has deteriorated. All in all, I guess I just want to know if I’m on the right track. John has been very helpful, but I have not been back to him lately. Sorry, John. Will try to do better!!

Jump to this post

I also have glaucoma or high eye pressure, that is one of the reasons I want to get off prednisone.. My balance was very shaky, some better now. I am not sure whether it was the disease or the prednisone. The less medicine I had to take the better I felt. The same with that foggy feeling. I have not had weight gain, but not lost the 10lb that I know would help me feel better. I do concentrate on healthy diet, lots of organic vegetables and fruit, preferably heirloom. I eat very little meat, can go weeks without it. I do eat seafood. Also put anti-inflammatory spices and herbs in my food. The worst thing for inflammation is sugar. I found that out when I had my birthday in January and ate pieces of very, sweet, rich cake. .I get fatigued each day (don't know whether that is because of illness or medicine) Sometimes I lie down for a couple of hours in the afternoon, others I just push through it. I am down to 3.5mg taking 2 in morning and the rest in evening. This low dosage, I do find some beginning cramps in a leg during night, but if I get up, take a some water, go back to bed it is gone. In the mornings I have some stiffness, but it gradually disappears. My past staggering around I really believe was due to Prednisone. It is such a nasty medicine, but a necessary one. I hope you get to feeling better and do try to have positive attitude. I set small goals for myself and celebrate, usually a glass of good wine, when I have achieved each one. A very hot shower in the morning with the spray concentrated on my lower back (osteoporosis) helps me. After working at it each morning, I can now touch my toes while in shower. This is such a long reply, hope something in it might be of help. Maggie 🙂

Liked by Dee

REPLY
@danielad

Hi Beryl – Yes, it is soooo annoying losing what you were writing! I discovered that if I am using the cellphone, as I am doing now, I can recover the "page" I was on and continue where I left off. However, I was on my laptop!

About the information on the heating pad — Yes, please! I would welcome your information, it may help John to relax!

Thanks Beryl!
Daniela

Jump to this post

I too have PMR. Have had trouble Weaning off Prednisone. My Rheumatologist added Meloxiczm to help.

REPLY
Please login or register to post a reply.