Hi
I have PMR since last April, my question is,if the steroids suppress the symptoms (and wreck the body in the process)
What cures it.
The doctors appear to know so little about it.
Dee: Hi I have PMR since last April, my question is... - PMRGCAuk
Dee
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Deeroy2015
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Hi
I don't have much experience as only had it since August 2015
But as I understand it the Steroids help control each lot of inflammation produced in our muscles on a daily basis.
Their is no cure it will run its course and eventually die out or go into remission .
But we have to do our part as well which is listen to our bodies ,eat a healthy diet ,Take a little exercise and rest .
Someone with more experience will be able to give you the technical stuff but that is the basics.
Rose
Thank you for the reply. Just need to get on with it I suppose.
DorsetLadyPMRGCAuk volunteer
Hi Dee,
Sure PMRpro will be along shortly with her technical head on and explain fully, but as I believe in laymens terms much as Rose has already said. For some reason our body's auto immune system goes awry, very often after some stressful incident, but not always.
In PMR or GCA this allows certain cells in the blood vessel walls to grow out of control, thus limiting the amount of blood that circulates throughout our bodies. As blood carries sugar etc to energise us, we feel fatigued, it also means not enough blood gets to major muscles (PMR) or major arteries including head (GCA) causing pain and stiffness. In GCA it can also mean that the optic nerve is starved of blood, which can lead to blindness.
Pred does not cure the problem, there is no cure, but it does control the inflammation until the illness burns itself out. Of course, then you have to wean yourself off of Pred, which is another problem altogether!
As Rose says, you have to learn to control your symptoms - until they go. Unfortunately, despite what some doctors say, you can't put a specific timescale on how long you will have PMR or GCA.
Sure if I got anything wrong, someone will come along and correct.
Thank you for the reply. Feeling very down with it all at the moment. But onward and upward I suppose.
DorsetLadyPMRGCAuk volunteer
Yes, I think the most difficult part is coming to terms with it in the first place. It's not nice to think it controls what you do, once you accept it's what it is, you can take control. It's not always easy, but you have to accept it does limit what you at times, but that doesn't mean you can't still enjoy life!
Hello Dorset lady
I think the worst thing is that so little appears to be known about it by the g.ps. So it's trial and error on their part.and the side effects of these steroids which are really quite scary.
I had accepted the illness and had at last come to terms with it,not realising the effects of the steroids on my body.
Yes, there are not the nicest pill to take, but unfortunately they seem to be the thing that controls the inflammation - and they are cheap! So until something better, or cheaper comes along we're stuck with them.
Not sure what you started on, but I started on 80mg and my mind was blown away for a few weeks! Very exhilarating, but very scary as well! But as I'd already lost the sight in one eye, and was desperate to save the other one I didn't really have any option. My poor late husband must have thought I'd finally lost it, but we did get through those very tough times. Not quite sure how, just pure bloody-mindedness I think. We both hated to be beaten by anything! My husband favourite sayings were 'don't let the bas***.ds grind you down' and 'this is not a dress rehearsal, live life to the full'. Not always easy to maintain, but they got us through most things!
I also suffered from raised glaucoma levels, and early onset cataract in good eye. Both sorted now thankfully.
But as you said - onward and upward! Take care.
PMRproAmbassador
I can only say that DL has hit most of the nails on the head.
No-one knows WHY something upsets the immune system and causes it to turn on your own body, not recognising it as "self". No-one knows WHAT does it - though it is probably a whole cascade of things and they may be different for everyone. There have been plenty of suggestions - but they rarely come up with something that is common to everyone. What happens in the body is that inflammatory substances called cytokines are shed in the body every morning and they set off round the body and cause inflammation - which every morning the pred cleans up and leaves your body in a reasonably state to go out for the day. At present pred is the only drug that does it reliably - there may be another about to be a possibility when the results of the trial in GCA are announced - but it is very expensive and has potential side effects that could make pred look very friendly. Swings and roundabouts...
In PMR though we can feel ourselves fairly lucky - while it is a real pain in the anatomy in every sense of the words, it doesn't kill us, it doesn't even damage joints or organs usually and for a good 75% of us it will eventually go away - in something between 2 and 6 years. In the meantime, pred provides a reasonable quality of life by managing the inflammation that is the cause of the pain and stiffness, and at a fairly low dose. If you develop GCA you will have some time at a higher dose to avoid the risk of damage to your sight - but that doesn't happen to by any means everyone. If you can reduce to 7mg or so the side-effects are minor for most people - there are always exceptions of course so I won't say never.
With some adaptations you can generally live a fairly normal life. Relatively few younger people develop it, so for well over half the patients there is less of a problem with combining work with a chronic illness though that is changing as retirement age rises. I also get the impression it is appearing at younger ages - but that may be that people are being identified rather than fobbed off with chronic fatigue, depression and whatever. If you want to feel a bit less angry about having developed PMR - have a read of posts on the Vasculitis and Lupus sites and count your blessings.
Pred doesn't necessarily wreck your body - there are over 80 listed side effects. No-one gets them all, many people get very few. And you can do your bit to reduce the effects of some of them. I've had my share in the past 6 years on pred but at present I'd say I have next to none - the weight I gained has pretty much all gone, my skin and hair are back to normal - downside is so are my nails after having the best hard and shiny nails in my life when the dose was higher! And a lot of us have found certain aspects of PMR can be improved - relieved not cured and it may not work for by any means everyone - by various complementary therapies
Only time will cure it - but in the meantime you can still have a pretty good and relatively pain-free life. It is all about identifying what causes problems for you - we're all different - and how best to manage your resources which is crucial. You may have to give up some things, or modify them considerably, but in compensation you will find other things to do. Learning to accept that this is the current status and the one you are living with will help a lot - fighting against it all the time just wastes energy that is better applied elsewhere.
This is food for thought:
nothing cures it, its just a waiting game until it decides to leave your body. just keep taking the pills. as directed. it could leave in a couple of years . or in my case im still taking pred 5 years on. only on 4 mg now
You would find Kate Gilbert's book: Polymyalgia Rheumatica and Giant Cell Arteritis, a Survival Guide, immensely informative for yourself and for those people around you who won't necessarily understand what you're going through. It's available from Amazon either in paperback or for Kindle. It also gives you ammunition to use if your doctors aren't as knowledgeable as they should be! Good luck and I hope your journey is a short one.
Ann
Thank you for your kind words. The book I have and found very informative.
Best wishes to you
Dee
I have found the above posts on PMR very informative as I have only found this website and the medical world have not been able to tell me half as much. Like Dorset Lady, I have glaucoma and the steroids has to be cut down to under 7mgs in order to maintain my sight.
This all started the year my husband died, 4 years ago, and the battle continues. I am down to 5mgs of prednisolone per day and it only skims off some of the pain. Nevertheless, I understand this disease much better now, I will order the book by Kate Gilbert and thank you all for your encouraging words.
Francine x
