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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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HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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Hello @elderdiana
Welcome to Connect. There are two other discussions that you might want to join specifically talking about Giant Cell Arteritis (GCA). @beryl you might also want to join these discussions to meet others and see what they are doing for treatments:
Groups > Autoimmune Diseases > Temperol Arteritis or Giant Cell Arteritis
-- https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/?pg=1
Groups > Autoimmune Diseases > giant cell arteritis
-- https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/
Groups > Stroke & Cerebrovascular Diseases > Adjusting to life with temporal arteritis
-- https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
@elderdiana I would recommend dicussing your preference with your doctor to understand all the side effects for long term use of prednisone vs having the fusions once a month for life. None of us are medical professionals and not able to give advice other than sharing our own experiences. Do you have any reasons for wanting to just up the prednisone?
John
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2 ReactionsHello @elderdiana
So sorry you had to go through all of that, before you were correctly diagnosed!
My husband John had some symptoms of GCA and he was sent right away to see an eye specialist. Thankfully, he doesn't have GCA, but I became a tad more informed about it; so I can tell you that IF my husband had been diagnosed with GCA, he would have been treated with 60 mg of Prednisone and Methotrexate as well. Our Rheumatologist did not address Actemra; so I don't have any information on it ... sorry! But others may well had that experience, as @johnbishop mentioned in his post.
Let us know how you are and what you decide to do. D.
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1 ReactionIt's amazing how many doctors don't even knw anything about Polymyalgia and many nurses have never heard of it. I was misdiagnosed 3 times by doctors before my nurse practioner got it right.
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1 ReactionHello Beryl,
This is not about PMR or GCA, but I wonder if this information could help you with respect to "eye support":
I have just found out that I have one of the traits for "Macular Degeneration" and my eye doctor saw the very beginning of MD in one of my eyes (he didn't know about my trait!). When he told me that, I asked what I should do to "prevent" this from occurring. He said to use very good sun glasses and he also recommended "PreserVision® AREDS 2 Formula" -- It's an over-the-counter supplement for the eyes. He said he has had excellent reviews from his patients. I have just ordered a bottle from Amazon. It is quite a bit cheaper than CVS.
Should you want to try the supplement, I would certainly ask your doctor if it is OK to add it to your meds; you never know!
D.
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1 ReactionI do understand Edith! My husband has had plenty of symptoms for years ... Until it got so bad, in the last few months, he couldn't even get up from a chair by himself, or walk!! Finally, we went to the Rheumatologist ... and found out he had PMR!!!
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2 Reactions@elderdiana Hi Ive read John,s note on Prednisone Im a retired nurse and the side effect of it ,its hard on the kidneys so the Dr should only give you so many its usually tailored down from 5,4,3,2,1 a day thats a save level to be on but Dr can give you instructions.
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2 Reactions@danielad @beryl. I also have M.D. The opthmolgist told me to take it Usually your eye Dr will recommend it .
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2 ReactionsHi @lioness,
Your opthamologist told you to take "PreserVision® AREDS 2 Formula"? That's good news! Do you find it helps? D.
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1 ReactionI 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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2 ReactionsBy 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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