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) group.

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

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@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!!

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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 🙂

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@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

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

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