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DiscussionNew Diagnosis of Polymyalgia Rheumatica (Husband)
Polymyalgia Rheumatica (PMR) | Last Active: Feb 29 2:49pm | Replies (102)Comment receiving replies
Replies to "Hello all! My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every..."
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
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