I'm 57 and was diagnosed with polymialgia in sept 17. It was particularly bad in the beginning. I've got a stack of prednisone on my kitchen bench but loathed to take. As the months have passed its not as bad as it was. Though some days I get very tired and achy. I've been taking turmeric and magnesium with b vit and they seem to help. I'm down to one ibroprophen a day taken at night.
Kneeling down is agony so gardening so hard - any ideas to help would be appreciated.
My concern is the giant cell problem.i can handle the polymialgia. Has anyone experienced the effects of this and if so what do you really need to look ou t for. Is there a natural alternative to giant cell?
Also if anyone has other natural alternatives to prednisone I'd love to hear.
Just hope it goes away soon! Though reading the messages it's not a possibility. :0(.
Thanks.
Debbie
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Debeedee
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Unfortunately there is no alternative to Pred to control the inflammation caused by PMR completely ..full stop. Alternatives may help, but that’s all they do. Some may manage to get through PMR without medication, but I doubt if they are on this site, however there are some who tried the alternative way first but had to eventually resort to Pred.
It is not a given that you will succumb to GCA if you leave PMR untreated, but you certainly increase your risks of doing so without the Pred.
Have a read of attached - may help you decide the way forward
Hi Dorset lady. Many thanks for your reply and information. It's very helpful and I really need to think hard in the next few days as to how to go forward on this.
I had the symptoms of PMR for 5 years - and it was probably something nearer to GCA - without any pred. Not my choice - no-one managed to diagnose it. I was lucky, it never progressed but it was a fairly hellish 5 years and I will never forget the miracle of the first dose of pred: I could move normally for the first time for well over 5 years. It took a bit longer for all the pain to go but I am almost pain-free because I won't compromise, I take the amount of pred I need, currently about 8mg, I have been lower. And now it is 14 years since PMR first raised its head. It isn't guaranteed to disappear in 2 years as some doctors will have you believe, 6 years is average.
I have had side effects of pred - but when you know how most are manageable and now I would say I have none at all. The second link DL gave you shows that the side effects may have happened anyway - and since PMR with no pred means less exercise you become more immobile, leading to weight gain and putting you at risk of diabetes, depression and osteoporosis. You become cut off from your friends - because you can't keep up and get tired and irritable. Most people you thought were your mates will be less sympathetic than you hoped. You may have all this when on pred - but at least you don't hurt as much.
It is your choice, but it isn't as simple as pred bad, no pred good. Without pred the inflammation is coursing through your body and damaging tissues. It increases the risk of developing not only GCA but also other vascular diseases and even some forms of cancer. In the great scheme of things the potential risks make a bit of weight gain or acne look minimal. If you do progress to GCA then you have no choice but to take pred although in the USA you may well be offered Actemra to reduce the amount of pred you need. But pred is first line - or you risk irreversible loss of vision.
And no - there are no natural alternatives when it comes to GCA. There are people who have and are claiming that a very strict vegan diet with no coffee or alcohol either helps their pMR symptoms but you would be silly to insist on trying that if the evidence was you were developing GCA. It would be a bit like Russian roulette...
Hi PMRPro. Thanks too for your kind response. I'm shocked you suffered for five years. How did they take so long to diagnose? Also your comments and information is most helpful. I'm just scared of taking something that is so awful even though I'm really playing Russian roulette as you pointed out. A bit of thinking and decision making to do.
I was "atypical" - text book symptoms but no raised blood markers and I was a mere 52 when I first queried it. And had a lazy doctor - terribly nice but a bit of a doozy as a medical advisor!! Had I gone to a different GP it might have been different - but the "one who knew about PMR" was part time when she was there and repeatedly on maternity leave!
Honestly - pred is NOT awful and we have to spend a lot of time here on the forums explaining that. New work has shown that for PMR doses the side effects are not a problem:
The links are about the same research, the articles present slightly different aspects. YOu don't stay at the starting level, you reduce to find the lowest dose that works as well as that dose did. Your body makes the equivalent of about 8mg of a corticosteroid substance naturally and you need it to function. While you are taking pred, your body doesn't make more, like the central heating switches off when you use the wood burner. So in a way you aren't taking as much as you think.
Hello, I’m 55 and was diagnosed with GCA last year. No PMR. It blew up with not much warning over 48 hours and my eyes were going in the last few hours before Pred. My starting dose was 60mg, others on here have been higher. If I was in your shoes, quality of life aside, I would settle for the lower starting dose of PMR and not risk ending up with worse later on, like major blood vessel damage that is silent. With hindsight I was not a well person circulation wise even though I was sporty, working and being all things to everyone for my family. This happened with a very good anti inflammatory diet too. The side effects have been a pain at times, but I have not put on any weight with a strict ultra low carb diet. It isn’t all doom and gloom, well at times it feels like it, but it is temporary. Once you adjust to Pred you may well find that your improved pain free mobility will enable you to live life more healthily anyway.
Hi SnazzyD. Thanks you also for your kind response. It was a shock to read it came on so quick. Did you not have any other symptoms prior to that? Even so. I'm a little more scared of the possible consequences ie giant cell.
I didn't realise either that PMR can cause cancer too.
There were things for months that wouldn’t send me to the doc. More frequent hot flushes that I assumed were my menopausal ones (ovaries removed in my 40’s), patches of hard skin on places on my feet that weren’t rubbed by shoes, extra tired, occasional waking in night for a wee to find right eye was not seeing but it came back in a minute or two, rubbish finger nails, occasional waking with both arms numb like I’d slept on them, tiny blood vessels bursting in my fingers. In the final week, it was getting black spots in my vision when I was breathing hard when cycling over a steep bridge cycling to work. As for pain, there was a niggle like someone pulling a piece of string in my temple about 3 days before it became pain. That pain was like a burning on the surface of my skull rather a headache which feels more like brain pain to me. Others have different signs.
The problem is that you can get larger vessel damage silently, so I wouldn’t say it is just a case of avoiding Pred and being vigilant for signs. By the time you get symptoms properly it could be further down the line than you’d like.
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