1. < Polymyalgia Rheumatica (PMR)
Profile picture for ronludington

Aches and pains , what would you do ?

Posted by ronludington @ronludington, Jan 10 8:55am

For PMR, (had it for 7 years) I've been on Kevzara for 4 months reducing from 7.5 to 5 mg of pred. The kevzara was finally starting to help . Then the dreaded lab test showed my wbc a bit under the normal low range. (4.6 from the rangrange 5.1- 10.8) And my liver enzymes a bit high (alt of .63, ast of 50) So my rheumatologist said to skip a month of kevzara to see if my numbers normalized., if they do I can go back on kevzara ... so I wake up now stiff and hurting, rheumatologist says stay at 5 mg. I go for my blood work 10 days from now on the 20th. So 10 more days of pain. I could use some tylenol , but I hate to use it everyday. Hot shower helps some, massaging helps some. I dont sleep well, as an example, I keep a glass of water on my night stand as sometimes I will wake up with what I call Cotton mouth. I'd rather lay there and suffer than reach for that glass. (I know it's going to hurt)

well that's enough whining, I'll just have to tough it out until my bloodwork gets done. I may just take a 7.5 today for some relief.... uuuugh.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for ronludington
ronludington | @ronludington | Jan 14 10:22am
In reply to @mezack25 "I’m down to 3 mg pred. Morning aches and pains stink. Some days worse than others...." + (show)
Profile picture for mezack25 @mezack25

I’m down to 3 mg pred. Morning aches and pains stink. Some days worse than others. I’ll take a couple Tylenol not sure it helps. I really don’t want to take any higher pred. I want off it!! Any other suggestions? What has helped you folks other than more meds!! Thx

Jump to this post

@mezack25 I find a good hot shower helps.
I wish I still had my hot tub. I'd be in it all the time.

REPLY
Profile picture for Mike
Mike | @dadcue | Jan 14 10:33am
In reply to @stonewheel "@rosi75 Please keep us updated on your Eli self testing experience. We live in our bodies,..." + (show)
Profile picture for stonewheel @stonewheel

@rosi75 Please keep us updated on your Eli self testing experience. We live in our bodies, not the doctors
I was reflecting, just yesterday, and thinking that PMR doctors should have experienced PMR themselves. I think my rheumatologist is still performing like she is still in school performing for a teacher or perhaps attempting to prove to someone that she is adhering to a preferred standard of protocol.
We, with PMR is different for each one of us. Often extreemly different.
Thanks for sharing. Best of luck and keep us updated.

Jump to this post

@stonewheel

One of my rheumatologists has an autoimmune condition so he is very attune to what it is like. He wasn't going to say anything until I asked him how he knew so much at a very young age. When we compared notes, I realized that I was about his age when the same thing happened to me. Then the rheumatologist disclosed that he had reactive arthritis the same as me.

REPLY
1 reply
Profile picture for stonewheel
stonewheel | @stonewheel | Jan 14 12:03pm
In reply to @dadcue "@stonewheel One of my rheumatologists has an autoimmune condition so he is very attune to what..." + (show)
Profile picture for Mike @dadcue

@stonewheel

One of my rheumatologists has an autoimmune condition so he is very attune to what it is like. He wasn't going to say anything until I asked him how he knew so much at a very young age. When we compared notes, I realized that I was about his age when the same thing happened to me. Then the rheumatologist disclosed that he had reactive arthritis the same as me.

Jump to this post

@dadcue interesting. He can relate.

REPLY
Profile picture for urusvati
urusvati | @urusvati | Jan 15 11:25am

Something that helps me get immediate soothing relief from crippling aches and pains is standing in a hot (not scalding) shower for several minutes. The relief lasts for about an hour afterwards. I can't seem to duplicate that feel of wet heat in any other way, but it's a big piece of relief for a relatively short amount of time. Maybe this will help another and possibly last longer. I am one year into being prednisone-free. I am trying to cope with PMR without meds except the occasional ibuprofin (which only slightly takes the edge off and mainly helps me sleep). I also invested in a "walking pad" and do a slow walk (.7 MPH if you can believe it) to keep my hips moving. My PMR seems to be getting worse...

REPLY
1 reply
Profile picture for tweetypie13
tweetypie13 | @tweetypie13 | Jan 15 5:34pm
In reply to @urusvati "Something that helps me get immediate soothing relief from crippling aches and pains is standing in..." + (show)
Profile picture for urusvati @urusvati

Something that helps me get immediate soothing relief from crippling aches and pains is standing in a hot (not scalding) shower for several minutes. The relief lasts for about an hour afterwards. I can't seem to duplicate that feel of wet heat in any other way, but it's a big piece of relief for a relatively short amount of time. Maybe this will help another and possibly last longer. I am one year into being prednisone-free. I am trying to cope with PMR without meds except the occasional ibuprofin (which only slightly takes the edge off and mainly helps me sleep). I also invested in a "walking pad" and do a slow walk (.7 MPH if you can believe it) to keep my hips moving. My PMR seems to be getting worse...

Jump to this post

@urusvati
I have success with hot tub or jacuzzi bath tub,
Also OTC Tylenol for Arthritis 2@ 3x a day if bad,

REPLY
View MoreView Less
Please sign in or register to post a reply.