New Member | Arthritis Information

 

I have been reading all your messages and it has helped to know how others
are dealing with PMR. I have been wondering how long everyone has been
diagnosed and how they are dealing with the "misery"! I do see a message
therapist regularly, does anyone have any other ideas? I understand that
PMR can last from 1 to 4 years. Is that right?

From the Skagit Valley, Libeth

This message board has also helped me to feel not so isolated with PMR.   I had not heard of PMR before, nor knew of anyone who had it.  I don't know how long they have been calling it PMR, probably before it was lumped together with rheumatism.  Then as time went on, some people returned to normal.

When I first started reading about PMR on the internet, I read that it was one year to 18 months.  Now I read that it could be longer.  I have had it for a year.   I was on prednisone and methotrexate for about six months.  But my eye pressure increased with my glaucoma and the methotrexate made my liver numbers rise.  So, my rhemy gradually took me off prednisone.  I had been going down by myself and was at 5mg and according to her records, I should have still been at 10.  So I went down 1 mg every two weeks and was done and didn't feel too bad.  When I went off Methotrexate though, then I started hurting.  But, definitely not as bad as before the medicine. 

I had PMR since August 06, and was diagnosed in Jan 06 and started 20 mg of prednisone.  I could not turn over in bed, get off the toddy or out of a chair without terrible pain. I dropped to 15mg in about a week and still felt good. It was like a miracle pill...my pain was gone in about 24 hours.

I keep hoping all I have is six months to go.  Some days I feel like it is going away.  And other days, it is back again.  Yesterday I drove to a town about 90 miles away and shopped for a while just to gt away for the day.  I took Tylenol, but I still hurt last night and didn't sleep well at all.  Hot bath this morning really felt good and took more Tylenol, and guess I am about average feeling for pain.  The day won't be too bad.  I keep brushing the thoughts from my mind that this is a lifetime predicament.

We will all be looking forward to hearing from you again and hearing how you are doing.   Mary

Libeth,

It seems that PMR's course is  unique to each individual. I "had" it for 5 years. Like Mary,  I felt like it was going away, and told my rheumatologist several months ago that I didn't think I had it any more, although my sed rate is consistently around 44. I still have "bad" days, but nowhere near like at first. I am wondering if a person can continue to have a mild form of the disease for much longer. I only took prednisone for 1 year, and was told by my current rheumy that that wasn't long enough. Oh, well. I am stubborn and really don't like to take medication if I don't have to. Prednisone was a godsend at the beginning, and I still miss feeling normal, but don't want to risk all the side effects from longer term use.

Welcome to the forum. You'll learn a lot here.

Reni
Libeth,
     Welcome to the forum, you will find this a godsend, we have a lot of laughs, we do a lot of complaining and compare dr. visits.

     I have had pmr for 4 years, up and down on the pred. only seem to feel better on high doses.  my pain is in the hips, pelvic, leg area and when i get bad it goes in the shoulders, extreme fatigue is the worse.
    
     Hope your days get better and welcome again.
.........................Georgiana.......................... ......
Thanks for your response, I feel welcomed! Today has been a pretty
good day for me, but I am afraid I might have done too much and will pay
for it tomorrow. Does that happen to you too? I am going to stay at
15mg Pred for now, and maybe lower it in a week or so. My "rheumy"!
tells me to try to get down to 10, but also gives me some leeway. To deal
with some of the pain have any of you tried the "heat sleave"? It is a roll
of cloth filled with substance that can be heated in the microwave. You
can drape in across the shoulders and neck and there is relief. Good
across the back too. Also a hot bath with a cup of so of cider vinegar at
the end of the day helps for a better sleep. Any other tricks for relief?

from the Skagit Valley, Libeth

Libeth,

Overdoing things and then "paying for it" the next day, or even several days after, is a common theme. I never did quite get the hang of pacing myself. Seems like I always did either too much or too little. You know how those good days are? You tend to want to make up for all the days you couldn't do things because you felt so bad? Either way made me hurt worse. You will probably find that you have ups and downs. Don't know if "flare" is a proper term for the bad days with PMR, but that's what I called it. Never tried the heat sleeve, but did soak in a hot bath many times. Felt good until I got out. For me, lying flat on my back on the floor was the best relief. Of course, it was murder trying to get up again. Welcome! I have had PMR about 14 months. Was diagnosed July 12th. I
started on 10 mg pred, went to 15 and have been on 20 for about 3 weeks.
Earlier this week I realized I really felt pretty good! This week has been killer
for me work wise, have gotten little sleep, and not eaten as well... this
morning I realized I knew exactly what the pr symptoms are because they
were rearing their ugly head (although mildly!)
One more killer work day and a long car ride then hopefully I can rest a little!
Best of luck and feel well!
pgr555

Welcome Libeth!

I'm also new but old enough to know that this is a wonderful group of people who share something they wouldn't wish on thier worst enemy (well, in most cases anyway 

I spent a lot of time looking at all the old posts to get a better understanding of what we're dealing with and it helped.  I suffered from bursitis and sciatica for over 2 years (unable to sleep for more than 2 hours at a time) along with shoulder pain and a few other symptoms that I never put together.  I was diagnosed recently and finally decided to take 10 mg of prednisone (this is my 7th day

The only tip I can offer you is to stay in touch with this group.  If you have a question, don't be afraid to ask it.  They will come to your rescue as best they can.

You take care and don't hesitate to talk if you need to.

Kathy

 

Hi all, Thank you so much for your quick responses, it is odd how much it
helps to know there are others who feel as bad as I do! I'm not alone, and
not singled out for dire punishment! When I drag around like a sick cat,   
apparently I look okay to other people, they don't seem to get how wretched
I feel. The physical misery is not the worst, the worst is not being able to
do all the things I have in my head to do. I have realized that I am fighting
the "affliction" and that I should give to it in a way, and focus on getting as
comfortable as I can for the moment and remind myself that "this too will
pass".

LibethBetsy, which blade do you like best, gillette or remington?
Copyright ArthritisInsight.com