PMR common denominator? | Arthritis Information

JUst wondering about a common denominator for PMR. In my lifetime have done a lot of spraypainting. The other week I visited a person who also has PMR (I had never been in her house) and saw a lot of spraypaint cans .Turns out she spraipaints rocks etc (some sort of hobbie) . I had always thought that that might be a reason for my condition so seeing the cans at her house was quite astonishing. I mentioned it to my reumy and he is going to ask all his PMR patients the question.

Have any of you worked with paint at all for extended periods?

I have been an artist all my adult life. I've used quite a lot of spray lacquer over canvas oil paintings etc. Not everday, but more than most people. I've always wondered that too, about any kind of paint.

I saw a documentary on the health channel once. There was this guy who one day woke up and could not walk anymore . His profession? painter!

Scary stuff that paint. I will never touch a spray can again!

Not much painting in my life.mmmm..........there goes my theory out the window

Judi xx

No painting for me

Georgiana
No painting for me, but we do have a photographic lab.. lots of chemicals there. I do not handle them as I did the admin. Since PMR I have 'Real Tired '... not Retired as I want to!!No painting for me either...wish we could find a common denominator!

no painting for me either, this is an on going battle, you

not smiling to-day Rose

Dear Rose,

your post said you staggered up the aisle for church, teetering like you were 90, caught my attention.

I am having the biggest problem with walking, so unsteady on my feet, I feel like I could topple over any minute.

I have lots of pain in my feet, legs, hips and buttocks and that causes me to have difficulty walking. I am also very discouraged with this, and between you and me I see no end coming, when i think back i am worse now than i was six months ago. sorry i sound so negative but i am so tired, you are very lucky you have a good husband, i am a widow and i am all alone with this. i do not even tell my kids everything, God Bless you and your husband Georgiana

thanks georgiana my husband said to-day "when the phone rings, kids, etc. you sound so upbeat as if nothing wrong, but as soon as you hang up you can just about make it to the couch" Why am I trying so hard to let on nothing is wrong to all the others, I am certainly not a saint or martyr and I certainly ask the good Lord enough to be more liveable especially with my husband. Guess you can pretend just so long then the sh** hits the fan. Go figure. All I know is my frustrations are coming to a head much more lately and I could just scream.....I know all of you on these threads are going through the same torture, but why do the others we care for not understand. Tks for lending me your ear and so sorry you are on your own, I think of people in your circumstance daily and thank God for my best friend of 53 years.....god bless us all....Rose

Georgiana

I don´t thinik you are all alone on this. Why don´t you tell your kids? I have told everything to my own sons in order that they will know what PMR is alike. I think we have to spread the message about PMR - above all to our dear ones!

Ragnar

RDSwede39201.4597685185Ah, dear Rose, Georgianna and all....am so sorry we have to have such a hard go of it all...thank goodness for this board, and those of us with patient spouses are doubly blessed. I agree w/Ragnar that we shd let the kids know what is going on because they are at risk for developing this as they get older. But, you know, as a mom, it is hard to complain when I have always been the nurturing one taking care of them. But they are in their 50's and 40's now and quite capable of dealing w/life's hardships. I do think they shd know the facts but I don't want to be a complainer. I try not to burden my husband too but of course he has eyes to see...one day at a time. I have just dropped to 6mg and the withdrawal is in full force...never know if it is the pmr or prednisone decrease effects...one day at a time...hugs to all...gma

No paint for me, but miles of fabric or "cotton crack" as my family calls my addiction. I am a obsessive quitler. Or lets say was..now only on good days are my arms good enough to allow me to quilt. And today is not a good day. At 10mg-have failed twice there. Determined to go slower and make it through the wall.

Lonna-a quilt angel with very aching wings

This is getting to be an interesting thread.

Like Rose I don't say to anybody how I feel and I don't think my husband, or mom living with us, even knows.

I think it's because I don't want to be a complainer and think I can just deal.

There are those that when you say to much I think just don't want to hear it. hehe.

Lonna I was a tapestry weaver and shawl maker and I'm not doing that.

Sat down and said well I'll crochet and the action of the left hand got to my shoulder, so I don't do to much.

I got the pain kinda under control but not the fatigue and I get alot of cramping. Already had a problem with that but I wonder after reading side affects of Prednisone, if it makes it worse. Hey I think I'll start a thread on that one.

Gma,
You said exactly what I think every day. Which is it the prednisone or the PMR?

I want to try again to come down and just about a week or week and a half ago they put me back up form 7 1/2 to 10mg. Thought I was ok. Felt a bit better going back up but more tired and more numb feeling, in general. So, I'm with you, which is it?

I don't understand why a high dose of salycilate won't do it instead of prednisone.

~KewaneeOh Rose I'm so sorry you are having this difficult and you've gone off the prednisone, which is good....maybe.

That rash and those area's you mention that are bothering you with pain, has me wondering.

Did psoriasis come up at all?
Were those area's affected before when you had the PMR going on and taking the med for it?

Just wanting to make sure it's not some other thing.

Why have they not found out more about what this is?
Why should it go away and come back unless, it is an autoimmune disease such as Lupus ect.

May it tame down with you. Can you take Aleve or anything else to see if it helps?

You know when I had a rash going right up my side once and encircling my underarm area, the Doc. told me that prednisone will make it go away but....next time it comes back you'll need to take more of it.

I wonder if that applies to have PMR rear it's ugley head again?

Sound like what you have could respond to prednisone but if anything else will take care of it, better.

How about a skin specialist?

~KewaneeKewanee39202.6054976852Kewanee..I am beginning to think it is the prednisone withdrawal symptoms and hopefully not pmr. I have been on prednisone since Oct/06, starting at 30mg. When my dr dropped me from 10 to 7.5 in January this year there was a major flare up so I went back to 10 for awhile and then began decreasing by 1mg every 4 weeks or so. I just dropped down to 6mg last Wed and did ok until Sat when my arms, hand legs started to freeze up...generalized body aches...and the fatigue, which is always a problem, increased. This seems to be the pattern every time I go down a notch. Well, I started to take Advil again to get me through the tough times and today I seemed to have gotten back on an even keel. It will take another week or so to see if this is stabilizing or not. And from all I have heard, going down to 5mg and below is a real struggle. If these symptoms are from prednisone withdrawal I will handle it come hell or high water. I never feel 100% super duper..the fatigue is always there...but at least I can lift my arms, turn the pages of the newspaper and hold my cup of tea!!Gma I hope you can come down and get through this. Hope it is the Pred. and not the PMR.

I always have fatigue as well. Maybe more than one thing going on with you as well.

How do you cut down by one milligram ect.?

I thought that 5mg. may not do damage to you like more would. Kinda thought of it as a maintenance dose.

Wonder if you would not have to worry about the weight gain and bone problems with just 5mg.?

~KewaneeThank you for your kind thoughts, Kewanee. When I cut down by 1mg I just go directly from ,say, 7mg one day to 6mg the next, hold my breath and hang on for the ride. I know quite a few of us do alternate days i.e., 7/6/7/6etc to ease into it and I may very well have to do that one of these days too, plus only go down 1/2 at the lower doses. I think the 5mg won't do as much damage as the higher doses, and it seems logical that that the weight gain and bone loss would be less also. But I still just want to get rid of it all if I can. OUr adrenal glands, under normal circumstances, put out about 5 to 7.5 mg a day. If we are taking that much prednisone maybe they aren't kicking in by themselves?? I really don't know...guess we shd ask a dr abou that. This has truly been a painful learning experience...there must be a reason for it all...sigh...take care everyoneIf there's a reason for all this, it better darned well be a good one!!!! Gma,
That is a good point. I've heard something just like it about another gland.

The thyroid gland. When one is hypothyroid and medicates for it, it can cease to have to work well for itself and shrivel up.

When I had a parathyroid gland removed they looked for my thyroid and could not find it. This was the explanation.

One does not want to mess with the adrenal glands.

Do you they have 1mg pred. and 5 so you can get those doseages?

I want off too and I'm on it for just a short while.

~KewaneeI've got some 2.5mg, so by combining those with a couple of. 1mg I can get
4.5(which I'm on now).

Hi everyone

I'm not new to this board but for some reason I had to reregister. Oh well.

I know why I act like I feel fine when people come over or ask me how I feel. I guess I don't want people to know that my body is not perfect and I surely don't need the sympathy. I guess I don't want to explain it all.

I'm slowly taking myself down from prednisone. I take it every other day. I have a long week and a short week. ON my long week I'm down to 10 mgs. four time a week. On my short week I take 15 mgs. for 3 days. Next week i'm going to try to go down to 10 mgs. a day for my short week. So far i'm maintaining the pain with Tylenol. Like you guys I want to get off this stuff. I do so hate taking pills. I do not have rheumatologist. Maybe I should but the one and only that I went to was very abrupt and made me feel like I was taking up her precious time with a minor problem. Never gave me a dx and unknown to me the results were sent to my primary care and was never told to me till 8 years later.

Can someone tell me if you have this with this disease? At time my legs feel very weak. The feel shaky and sometimes so do my hands. Is this part of this disease? Is it the pred or coming off of it, causing this?

Thanks everyone for you help.

Anna

Hi Anna,

I also have very weak legs, that is mostly where my pain is, and hips, I am beginning to have a lot of problems walking, I am very shaky and unsure, feel like I am going to fall. Went to the farm for my spring flowers yesterday and could just about walk around. I was very upset, seems more and more what I try to do is limited. I am very afraid of the future with this. I do not know what is going to happen to me.

Hope you find some answers. Georgiana
Yup, Kewanee, there are 1mg tablets but they are a little bit more expensive....whatever works! That is interesting about your thyroid gland...wow! You must be on throid meds every day

Something will happen and it will get better. I think you said you were at 6mg. I had to go back to 8 to get mine under control. Now, I'm back to 6 and doing ok. I'm not having to take darvocet, so it's a really good time for me. I don't know what will happen when I try to go to 5mg again. Maybe I'll make it this time. Hang in there, girlfriend. Take some more of the drug from hell if you have to to keep down the rust. We will get off it someday. Love and prayers.

gma

i had my thyrid removed two year ago in on daily med everyday 112 mg

my question does any one get bad headaches behind the eye from the prednisone went to the octor today he thinls it's the prednisone on thje ultracet the rheumatologist put me on in the rheumatologist said it could be the pain is behind my left eye in it get worst if light of any kind mostly sun and the light it work i'm wearing sunglass all the time now

thank you

vicki

Vicki...was that the opthamologist you saw or your regular dr? I sure wd want to get it checked out by a specialist. Have you ever had migraines before? Sure hope everything checks out ok. I know I had headaches when I was on high doses of prednisone but it was not just one eye...but with this weird disease one never knows what is going to happen next...yikes!

it was my family dr he sent me to never had migraines before my left eye is my weak eye my dr said that problem why the most pain hit that eye i'm to call today and let him know if the pain meds help it helped for about two hour then came backt oday after taking my prednisone about a hour ago it back full stream so i'm thinking it's the meds weird disease that it so true

thank you

vicki

I get pain in my eye and spams both which feel in the eye and alot of them in the eyelid but I don't know what to attribute it to for sure.

~KewaneeVicky I had horrible eye pain pressure when on prednisone. Both eyes though. You should go see an opthamologist. marianne195239215.6899189815

Hey everyone

Went to the Rheumi Wednesday. I really like her. She gave me a very good examination. She thinks that I do have PMR but because I have a lot of sore spots, she kind of leaned toward Fibro. The raised sed rate tho kind of taken it again to PMR. She also put me on an anti-inflamatory. I am now off all pred and hope I can stay off and can control my sugar glocuse better. She took more blood test. Will find out in a couple of weeks. Sure hope everything is going back to normal or as normal as a 67yrs old can be.lol

take care everyone

Anna