Have any of you heard of 'Alloprinol' being used successfully to reduce symptoms for PMR. A friend recently told she knows of several people who found it very helpful. I googled it and it says it is used to treat gout so I wonder about its applicability here. I'd be interested in any comments about this.
this, but can't see any connection with PMR/GCA:
What is allopurinol?
Allopurinol reduces the production of uric acid in your body. Uric acid buildup can lead to gout or kidney stones.
Allopurinol is used to treat gout or kidney stones, and to decrease levels of uric acid in people who are receiving cancer treatment.
Allopurinol may also be used for purposes not listed in this medication guide.
Important information
Do not use allopurinol if you have ever had a serious allergic reaction to allopurinol. Stop taking the medicine and call your doctor at once if you have any signs of skin rash, no matter how mild. Take each dose with a full glass of water. To reduce your risk of kidney stones forming, drink 8 to 10 full glasses of fluid every day, unless your doctor tells you otherwise.Slideshow: Out With Gout - Everything You Need To Know About Gout
[Out With Gout - Everything You Need To Know About Gout]Allopurinol can lower blood cells that help your body fight infections. This can make it easier for you to bleed from an injury or get sick from being around others who are ill. Your blood may need to be tested often. Visit your doctor regularly.
Avoid drinking alcohol. It can make your condition worse. Allopurinol may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be alert.
Before taking this medicine
You should not take allopurinol if you are allergic to it.
To make sure you can safely take allopurinol, tell your doctor if you have any of these other conditions:
kidney disease;
liver disease;
diabetes;
congestive heart failure;
high blood pressure; or
if you are receiving any chemotherapy.
FDA pregnancy category C. It is not known whether allopurinol will harm an unborn baby. Tell your doctor if you are pregnant or plan to become pregnant while using this medication. Allopurinol can pass into breast milk and may harm a nursing baby. Do not use this medication without telling your doctor if you are breast-feeding a baby.
Couple of brand names:
Brand Names: Zyloprim, Lopurin, Aloprim
I use Allopurinol as prevention for gout and know other persons that do the same
I've said something aout this elsewhere recently - I can't see how it would work and I've never found any literature about it. And believe me - I've read a lot!
Are they sure they didn't have both PMR and gout? I know of people with psuedogout - different crystals form in the joints. And to be honest - anyone who says they know several people with PMR is pretty unusual! Outside the forums and support groups few of us know another sufferer!!!!!
Why do you want to add another medicine, for something you don't have, with all its side effects.
Your body has enough to cope with the medication you have to take, with all its side effects, with asking it to cope for more.
If you have gout, OK and then ask the Pharmacist if it is compatible with what you are already taking and I bet you are not only taking pred?
actually Eileen I know at least 4, my landlords father, my daughter's mother in law. My clients mother and mother in law. Only my landlords father has it anywhere near as bad as me but he is 84 yet he still trundles around in his tractor at 5 am checking the cows! We laugh with each other because we both go to bed about 8-30 pm.. cant stay up any longer.... I go and have a cup of tea there sometimes and the pair of us crawling around like quasimodos is quite funny. well not really but you have to keep your sense of humour.
That's amazing - must be something in the water!!!!!
But actually you are right in that there are sometimes clusters - both geographically and temporally. Our grandparent's generation used to comment on there being places that were renowned for "rheumaticks". Studying such clusters could possibly give indicators for environmental causes - but now people move around so much it makes it more difficult.
Clusters of PMR, interesting. I know of two other people in my village who have or have had it. I will look intio this further.
There are two maps of the UK which you can find if you look for
Incidence of diagnosed polymyalgia rheumatica and temporal arteritis in the United Kingdom, 1990–2001
I have seen lately where the highest incidence was in Tunbridge Wells. Unfortunately I cannot find the link.
At a recent symposium in London on Vasculitis, one of the speakers on GCA, which comes under the vasculitis umbrella, said that the highest incidence is in East Anglia, with it being a bit less common in Scotland and the north west.
One lady who used to post on this forum a few years ago actually had 4 near neighbours with PMR.
The speaker also referred to a seasonal variation, with peaks seen in May and June.
I am wondering if the old fashioned acceptance of rheumaticks by our parents wasn't actually PMR undiagnosed. I can remember my mum crippled by it for a few years then it seemed to let up.... She claimed Guinness cured her LOL. My dad had the 'screws' from time to time when he could hardly move and used to sleep in the afternoon so he could manage a trip out in the evening. My auntie was hunched for a couple of years as she struggled to manage but when I remember her I can see the classic PMR stance.
It was the seasonal variation that made people think that an infection was to blame - but it just occurred to me that that is the time of year when hayfever strikes so could that upset the immune system as the final link? When I think of it, the first stiffness happened about that time of year but it was quite minor - I usually sleep with my arms above my head and I discovered it was uncomfortable. Then it spread to hips and thighs.
The regional incidence does match the highest incidence of Viking occupation...
I've been saying that for the last 5 years. My maternal grandfather and an aunt on the maternal side both almost certainly had PMR when I think of it. Fifty years ago people accepted being stiff and sore as part of getting older and were "old" in their early 60s, if not earlier. It was also worse in damp. low lying areas - like East Anglia - and it was a Scot who had first described it in 1888 and gave it a name: senile rheumatic gout! I think I do actually prefer the modern name! Thinking of my family members with PMR does give the lie to it burning out in a couple of years - they had it for years and year.
Of course - until the early 1950s there was nothing to be done about it, pred didn't exist. And I'll lay odds that the miracle results in wheelchair bound patients when pred was given to them and they got up and walked were achieved in PMR patients.
Christine, my paternal grandmother died when my father was 14 - all he knew was that she was in a wheelchair. Her daughter (his sister/my aunt) passed away in America when I was a very young child - all we knew about her passing was that she had lost her eyesight in the previous years. Little doubt that PMR and GCA are in my genes.
Eileen
"The regional incidence does match the highest incidence of Viking occupation..."
Doesn't it just. It makes the gene theory sound the strongest.
As for hay fever, I have never suffered from it. Having said that, I have been sneezing several times daily for very many months now - perhaps I just need to dust the house! My PMR struck just after Christmas one year, so long before the hay fever season, but just after a nasty stumble; GCA exactly one year later. Perhaps those of us with it in our genes (perhaps all) only need any one of a number of triggers to set it off, be it trauma resulting from a fall, severe stress, certain medication, etc
The speaker I referred to earlier said that no clear infectious agent had so far been found to be a trigger for GCA, but that the incidence gets greater the further north in the world you go. As far as vasculitis is concerned, he said that the strongest link is silica which is present in soil, adding that even that is not very strong. So the jury is still out!
This makes a lot of sense.... My maternal grandfather Nathaniel came from Ireland but was actually one of the ancient Jewish people who lived there from about 4-500 years ago. I believe many of the female decendants came from Nors women who lived there too. Difficult for immigrants and (in those days) virtual outcasts to find partners from their own kind. My father's family are definitely from Nors origine but I am the only tall blond person appart from him in my family. Everyone else is short and much darker. My husbands family originated in Russia but came to England in 1800's so hopefully my kids wont inherit this horrible thing.
I do know that for years when I had sciatica and what I thought were rheumatics I used to whack my hips and spine with bunches of new nettles... very painfull but the theraputic/pain reducing effects lasted a good 72 hours and was well worth it. My dad and my granddad used to do this... it was a traditional family remedy. They also used to go and lie on their backs in their pants in the fresh snow for about half an hour... they claimed it 'set them up for the year'. I wonder if some of these old remedies and some genetic theories are connected and would give some insight on many of our problems.
That's interesting about the "snow therapy" - they are investigating the use of cryotherapy for arthritis. Intense cold chambers for just a very short time, -60C for 1 min and -135C for 2 mins is being used for muscle recovery in sports training.
When I was still skiing regularly I did notice that a morning skiing left me in far less pain than I had been when I got up (no pred) - perfect movement for therapy of stiff hips I thought - but was it actually the cold?
Fascinating story, Christine - I often think that so many of the old remedies are the best. Good old salt water treatment for certain things, etc. I wonder if snow contains any salt?!
Yes well my mother in law used to smack my husbands hands if he ate sweets, she said it would give him worms... having done quite a lot of research reading on the horrible idea of worm thereapy on here recently I found that indeed, eating too much sugar can encourage the growth of worms... Interesting... we allways used to say she was daft!