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@danielad

Hello all!

My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched 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 periphery sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

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/in the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he became very "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, as I mentioned, he doesn't know "what" is not working — Is it 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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Replies to "Hello all! My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every..."

Hi Dee @danielad, reading your post sounds like I have a lot in common with your husband including my first name John. I have had two episodes of polymyalgia rheumatica (PMR) and I was also treated starting with 20 mg of prednisone. My first episode was in 2007 and I was finally able to taper off of prednisone in 2010. It stayed in remission until 2016 and again I was put on 20 mg of prednisone. This time I was able to taper off in about 1-1/2 years. So far it has not come back. Prednisone is indeed the miracle drug for PMR. My first occurrence was was almost exactly like your husbands, within 2 or 3 hours of taking the first pill I was feeling much better and was able to walk normal.

The only side effect for me on the prednisone was a hefty weight gain the first time around. I was able to control it more the second time around because I was a little more proactive. One of the keys is getting some exercise daily but not overdoing it. I'm 75 and I also have idiopathic small fiber peripheral neuropathy but just in both feet and legs. Like your husband I only have the numbness associated with the neuropathy and I'm thankful that I don't have any pain with it. I first found Mayo Connect when I was searching for a support group for my small fiber PN and it is a great resource of information with many members able to share what works for them and treatments they have tried. Here's a link to my story on Connect if you want more information on my searching for help:
https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510

Thank you for being an advocate for your husband. The most important advice I can offer is to learn as much as you can about his health condition. The more you know, the better questions you can ask his doctors and hopefully the better the treatment outcome.

If you are reading through the discussions that Colleen @colleenyoung shared her post and you want to ask a specific member a question just tag them by using their member name for example to make sure I am notified of a question just use @johnbishop.

Best of luck and keep asking questions!

John

Daniela how is John doing ? Beryl

Hi Beryl,

I was just writing you and the entire thing went "PUFF" into space!!! Any idea as to how to "recover" what I was writing?

Thanks! Daniela

Oh how annoying , no I don't know how to get things back maybe someone else will tell us?

It was nice to her from you because I have been wondering..

One thing that occurred to me was…….I have a heat pad under the bottom sheet of my bed ….it is very comforting and helps my legs to relax ….if you think this would help John I will send you the details of the one I have as some of them are too hot and not good at all……regards Berylx

Argh! Hate it when that happens @danielad. I've had it happen a few times when I'm posting and type a lot of stuff then switch to another window or hit the wrong key and the information I typed is gone. Not too big of a deal if it's something short. Sometimes if I know I'm going to write a few paragraphs I will use notepad on the computer and then cut and paste from notepad into a post.

John

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

Hi John — I know, I know …. I hadn't initially planned on writing about John's lab results … Then I did, and as soon as I finished, the entire page disappeared! What can you do? Now I know it may happen on this site!

Thanks for your suggestion! Actually, it would be much better if I wrote it in Words and Excel. This way I wouldn't lose anything and could continue to add the latest results to the Excel plot.

Thanks again John!

Daniela

I have had mine a long while so I spect it will look different …..I just don't have the max heat on mine…..looked on the box and the email is consumerrelations@kaz.com…….hope this helps Berylx

Thanks Beryl. I did find Kaz Heating Pad on Amazon! I will see if John wants to get it. Daniela

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

@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

Hello 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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