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.

@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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I take PreserVision AREDS 2 and have for a few years. I have wet macular degeneration. We are trying to prevent it as long as possible in the other eye. I take injections in that eye very 12-16 weeks. I can't tell you if it works or not. I am only hoping that it lengthens the time before my other eye gets it. I was told it would happen sooner or later.

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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By the way, you can get it at any Walmart and they are the cheapest even after Amazon. Usually you can find a coupon for $3 off 1 bottle and $7 off 2 bottles. I have taken them for years as I said and researched this.

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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@danilad. Yes it does Ive been takeing it for about 6months and exam a couple of weeks ago showed no more progress on the M.D. Plus she has me go for a indepth picture of my eyes Tell him to be proactive for his eyes we dont want to lose our sight. Even though they are around 32.00 its worth it you get a coupon in each box.

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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@sorry you have to get injection och I have the dry and take ARD also

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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Hi D thank you so much for the information ….
I will certainly look this up for myself and my husband Ainslie , it is so important to look after the eyes , and as for the sunglasses I will make sure mine are up to scratch ……thank you again and I hope things are working out for you and John…..Berylx

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@elderdiana

PMR often coexists with GCA. I have not been able to find another person with GCA so I started reading the PMR comments. GCA stands for giant cell arteritis. Started 3 years ago with vision loss in right eye which returned in about 5 minutes and jaw pain while chewing. I was in Banner Boswell hospital and told it was not GCA but possibly migraine starting in eye but not going to brain and jaw was TMJ. I went to another hospital a few months later because blindness happening several times a week. They did a biopsy and confirmed GCA. Put on 60 mg prednisone for 3 months with methotrexate added after 6 weeks. Slowly reduced prednisone, down to 4 milligrams by last spring, still on methotrexate, when C reactive protein tests started climbing. Now my Doc wants me to go on Actemra,(tocilizumab) fusions once a month for life?? I would prefer to just up the prednisone. Any ideas, any body?

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Kind of you John to send my the ref. I will certainly join in and reads what others say…..
By the way did you get a heat pad and if you did does it help…..Beryl

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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You are very welcome Beryl! It's available at CVS, but I have ordered it from Amazon because the price difference is approx. $11 dollars!
https://www.amazon.com/gp/product/B00DJUK8HS/ref=oh_aui_detailpage_o01_s00?ie=UTF8&th=1
Enjoy the day! D

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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Thank you @suemer!

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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Hello again @lioness,

Thank you for the great feedback! It really helps to know that it appears to be helping you! Also, I am the one with a beginning MD, John doesn't have it, though he does have the beginning of Glaucoma, so he will take the supplement as well.

About the cost: You may want to try Amazon, I found the supplement on Amazon for about $11 dollars cheaper than CVS:
https://www.amazon.com/gp/product/B00DJUK8HS/ref=oh_aui_detailpage_o01_s00?ie=UTF8&th=1
I ordered it yesterday and my first bottle will arrive on Monday or Tuesday. Note that Amazon also offers a periodic shipment for "ANOTHER" 5% discount! Not bad! I didn't subscribe yesterday because I wanted to hear from others on the forum; but now that I have heard from a few (including you!!) I will subscribe to the periodic shipment and save even more!

D

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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Hello @suemer,

Can I ask you how much you pay for 120 pills at Walmart? It costs $23.60 at Amazon. Thanks! D

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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@danielad your welcome and I will check Amazon does your husband have to take drops for his glucoma? This goes along with M.F as I have it also so he is wise to start it good luck

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@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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@lioness, I am sorry, I said glaucoma, but I meant cataracts (!!!). D

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