diagonosed in 2008 February
coming up on my 3rd birthday of pmr
went to 1 mg last year of pred..then had a major flare
and now am back to 2.5-3.5
taking it slow
but am so tired and sore during the holidays..
and cold weather..
and fat
guess if this doesnt burn out i will dress up like santa next year..arg
anyhow..just stopping in to say have a great pain free getting better by the day new year...
Hugs to you! Curious about the major flare up . Is there anything you can identily that caused it? Now that I have finally reached 2mg of prednisone, I think my body is taking longer to adjust to lower dosages as I taper. Are you finding more of a struggle in cold weather? Best wishes from a Mrs. Santa whose girth might have expanded to equal yours. i went down too fast...wanted to get off pred..and my flare up was really bad..i have not really bounced back all the way since..:(
and i struggle in cold weather..so yes..take it slowly..
i rushed..and that was a bad thing..
The same thing happened to me two weeks ago. I was down to 2 mg and the pain and stiffness came back all at once. I already had a doctor's appointment scheduled and the blood test came back with my SED rate up to 66. It had been down pretty close to zero 6 months ago.
PMR. Miserable stuff. My doctor told me to increase to 3mg a day and see if that cuts the pain. I have been taking 3mg and the pain is not too bad. I'll stay at 3mg for as long as I need to to maintain my mobility.
It is a set back, but I feel with the holidays, and my doing all of the cooking, holiday shopping, and end of year business things it probably was too much.
I plan on relaxing for the next two weeks and do only what I feel is absolutely necessary. I have found that taking time to rest when I feel I need it is really an important part of managing my PMR. I should have known better over the holidays, but.....
Also, the cold weather hit and it snowed for 6 days. I cleared the walks twice, trying to take it easy because I enjoyed being outside in the snow. It was beautiful, but the cold is NOT my friend.
Maybe the change to cold weather was also a factor in my flare up. I do better when my muscles can stay warm.
Hi, I am in Australia and have had PMR for 5yrs. Have twice got down to 2 mgm, but that was as far as it went. Always something happens and I have to up it.
Should I complain about the cold in winter in Sydney????? I do not think so.... BUT this winter was cold for us, I got the cold needed antibiotics and just did not recover. Pred up to 5mgm and then 7mgm to get me 'back onthe road'.
Last week I turned 60, and for me over the 5 yrs I have tried to do with as little Pred as possible, and rest and look after myself, but that does not get me better and that is not my lifestyle to sit back and watch life go by.
I now take 6mgm, which allows me to walk my dalmation twice a day and walk hills and play with my grandchildren and swim and care for my mum and dad etc etc....
I still get some fatigue , but , for me , if I can stay around this and then taper ever so slowly without losing the lifestyle , then that is me.
Pmr did not go away for me by taking care and standing on the side lines. Sorry everyone but this is me and turning 60 was a shock .I want to be able to do so much more and this damn PMR is not going to stop me if I only need a reduced amount of pred and my bones ,kidneys BP are OK.
I had a lovely Christmas and I so wish everyone a wonderful Christams and New Year. I also wish you all the energy to fight PMR, and you can feel better if you take the damn Prednisone, and have a dr and yourself watch out for side effects. Those with many other diseases do not have the abilty to have a drug help them to participate in life.
Many hugs to all Zali
What's the saying... "misery loves company"? Well, that really never made sense to me, but I had to go back up to 10mg from 8.75 per day just last week. This last reduction just didn't go well for me. At the beginning of last week I felt so sore I couldn't get around the house without wobbling. It did get a bit better as the day wore on, but no where near as good as I feel now being back on 10mg (been on 10 now for 5 days). I was supposed to try to reduce further down to 7.5mg about a month ago after my Rheumy said my Sed rate (ESR) was improved. Maybe we're all having trouble because of holidays? I for one know I felt extra pressure these past two months. I'm a musician and we can get really busy around the holidays.
I wish you all the best in managing the best you can and hopefully will all improve. So so true
I agree completely with this lady I to have just turned 60 had PMR for
2.5 years down to 3.5 then in august back up to 8mh now back to 6mg
definately a love hate relationship with pred hate taking it but love
the fact that I can continue to work, look after my mum and
grandchildren without pred I would be an invalid and life is to short
although a terrible illness I would rather have this than what some
people have to put up with and there is always the hope that one day it
will go away,.
Happy new year to you all keep well
I just heard on the news that the high on Thursday here will be 18. My PMR seems to know when the cold weather is heading this way and lets me know it. Great barometer this PMR, but I'd rather just look at the one on the wall.
My PMR and I will be welcoming in the New Year with lots of cold weather and hot soup. Hope all of you have a Happy New Year and keep those muscles warm!
My body also seems to be some kind of barometer ! I went for exercise in the Warm Pool a day before it was going to rain (Mon., two days ago). I felt great after being in the pool, but during the night woke up and my entire body was stiff and sore, and all day Tues. it was the worst it has been in a long time. I really think it has to do with the barometric pressure when a storm is coming in. Today (Wed.) the storm passed through and I am fine (well, relatively...how fine can PMR be?
i ♥ you all...
and yes..misery loves company..
but the reality is we all need each other..
need to know that it is ok..even when we hurt and ache..it is ok..
that we now have to learn to love the simpler things..
that when we feel sore and achy and tired..that this too is ok...
this new year...may we all be pain free..but if we are not...i am grateful we have each other!
There's a thread here (beyond the topic that is!) - there's a group of you having trouble getting down from 2-3mg/day. Research found that there is a proportion of PMR patients who never get off steroids entirely - about a quarter remain on a very low dose for years, sometimes for life. In some cases it may be only 1mg/day, but without that very low maintenance dose the PMR symptoms returned. In some cases they needed to go back up quite a way to deal with the pain so there is a lot to be said for accepting being on that level and any further reduction being so gradual as to be almost disappearing. Sort of like taking your reduction as being over months - if you are on 3mg/day, the first month you could reduce the dose to 2mg on one day, the second month you could try it on 2 days, well spaced out and so on, increasing the number of days each month. It may sound crazy but you have to remember that going from 3 to 2 is a reduction of 33% and you have to fool your body! And how much mental stress are you putting yourself under whilst trying to get off the steroids??