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New Diagnosis of Polymyalgia Rheumatica (Husband)
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.
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John, I found the "Kaz" Heating Pad on Amazon, if you are interested. This is the brand Beryl has. Daniela
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1 ReactionBeryl, I guess you don't have Kaz then? I did see "Soft Heat", but it wasn't Kaz ... D.
Glad you found one , it's only John that knows if he thinks it will feel good or not.....Berylx
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1 ReactionRight Beryl .... 🙂
I am going to throw a question out .....Why when you are diagnosed with PMR do the Doctors say it will only take a year or two and it will be gone......Why have we still got it after ten years or more?
Yes I am not in the sorry state that I was in those days but still having to medicate at night to be able to sleep and not being able to do the things, perticularly in the garden , that I love to do......any ideas? By the way did you get a heat pad Dee? Beryl
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3 Reactions@beryl -- I don't think the Rheumatologist knows if it will even go into remission. I don't think there is a cure. There is only a treatment for the symptoms but then I'm no medical expert, just a patient who has PMR. I had this conversation with my Rheumatologist when I was first diagosed with PMR in 2007 and started on 20 mg prednisone dosage. I thought it would be gone in a year but it took me three years to taper off of prednisone and the PMR went into remission. It came back in 2016 and I was able to taper off and it went into remission again this past February. Each of us is different. I think we can help ourselves by modifying our lifestyle - better diet, more exercise, etc. which I think does help keep the PMR at bay.
Are you still at the same dosage of medication? or have they tried other treatments?
John
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4 ReactionsNo John I not on a high dosage of preds , three Mgs , and I have to juggle this according to my pain level.....
No I have not had any other than pres. for treatment .....Beryl
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2 ReactionsMy first time around with PMR during the last six months I was bouncing back and forth between 1 mg and 1/2 mg of prednisone until I could finally stop taking it without having any pain.
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1 ReactionHello Beryl,
In my husband's case, the Rheumatologist is still in the initial phase of discovering how well the 20mg Prednisone is working; she hasn't made any statements regarding the length of the treatment, possible remission, or lessening of any symptoms when off the Prednisone. For the past 3 weeks, John has been feeling "like new"; infact, even the problems derived from his Neuropathy seem better. However, I believe that is because muscle and joints are "less tight". @johnbishop may elaborate on this point ....
I will tell you that following his start of the Prednisone (4 weeks ago), John's labs are all over the place! Or at least they were 2 weeks ago. He just had new labs yesterday, so hope to have the information by Friday. I like to get the results before seeing the doctor (Monday), so we know what to ask when we see her.
On our last follow up, 3 weeks ago, she said she would have a better idea as to what is going on, and how to move forward, following the 2 blood tests.
About the heating pad: John says "THANKS!" It was great on all the parts of the body NOT affected by the Neuropathy. He doesn't have any feelings on the legs (knees down) and his feet. Also has decreased sensations on the forearm and hands.
Stay well Beryl!
D.
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2 ReactionsHi Dee, thanks for writing ....good to know that you are hopefully getting somewhere......
Glad the heat pad is helping ....
Hey and you look after yourself it is a lot of strain on the partner too you know......Beryl
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3 Reactions