HI I've had POLYMYALGIA for ni.ne months,and am now down to 2.5 mg prednisolone after Starting on 25 mg,so don't give up hope,as it usually takes 18 months to clear.
I have two friends that had it for about six months,before it cleared.
I still have to take a pain control tablet early in the morning,usually 2-3 am,andfindthat soluble buffered aspirin 500mg works well,taken with magnesium chelate 300mg.
Aspirin has bad press,but when you look into the facts,only about one in a thousand people are affected with gastric problems,compared with nearly everyone that take IBRUFEN.
IVe tried every diet under the sun,and nothing seem to help much,but the pointers at the. Top of this site are the best" Ivefound,so now I will replace my daily dark chocolate
Square with crystallised ginger !( coffee is also a hard one to leave off!)
HOpe this is of some help to all fellow suffers
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FreogoTonyo
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I agree that aspirin has surprisingly bad press. I use it for headache and it does slightly help PMR, although I don't take it for that. It is not good for osteoarthritis as like other NSAIDS it interferes with cartilage regeneration, so contraindicated for regular use in my case.
And I have joked with my friends that ginger should be the new chocolate!
Hi pleased that you are doing well. I like crystallised ginger too although only eat a square a day! Bought it when I was feeling a bit nauseous a few weeks back and have developed a taste for it!!
Thanks for your cheery post FreogoTonyo. However, I don't think your experience of PMR and that of your friends is typical in that you have managed to come off Prednisalone so quickly without apparent ill effects. I have never heard of its duration being as little as 6 months.
Most of us seem to experience the condition from 2 - 4 years and unlucky souls a lot longer. I get that your intention is to encourage and give hope though.
What pain control tablet do you take? Do you mean Prednisalone, nothing else has much impact on PMR pain is the general consensus.
Aspirin is a much maligned and useful simple drug. I blame the Paracetamol. Industry for rubbishing the competition, and P is not turning out to be that harmless is it?
Chocolate in moderation has been shown to have beneficial properties - if only a moment of sheer pleasure.
Hi,everyone, I agree with you shefieldjane, I have had pmr for over three years now, am still on pred, doses go up and down depending on how I'm doing, coming down from pred, causes me so many problems, have tried to work out if its withdrawal , or the pmr, was hoping by now I would be free from this horrible illness, think for me the worst is the extreme head sweats, which can be embarrassing sometimes looks like I have stepped out of the shower, as my hair drips, and it runs down my face, doctor says it will go eventually, so I live in hopes, still have good days bad days, but after all this time you learn to live with it, and do what you can when you can, stay positive that's the best thing to do, best wishes to you all keep smiling
Hi, new to this group but unfortunately not new to PMR. Was diagnosed 3 yrs ago and it has been a rollercoaster of ups and downs with pain and fatigue.
I was tapering down prednisone slowly with the goal of getting off completely. I was down to 2 mg/day but also getting cortisone shots in my shoulders (about every 3 mo) for extreme shoulder/neck pain and stiffness. Have chronic spinal problems as well.
The cortisone shots were like miracles for me, helping my entire body feel good again and feeling like a normal human being. I realize though that they can't continue. I'm looking for alternatives to upping my prednisone.
Really struggling. Unbelievable fatigue and muscle soreness again. Feel like I'm back to square one. Always was active and fit. I am now 57 and look fit but feel like a 90-yr-old. I know since I don't look sick that people don't get it. I am discouraged and wondering if this will ever go away.
What is the matter with upping your pred? New work has shown that at the sort of doses used for PMR there are actually not significant side effects - i.e. many people not on pred would suffer similar rates of such problems.
There is absolutely no virtue in taking too low a dose of pred - you either need to take enough or not bother at all. When you take too little the daily dose of cytokines shed in the morning and which cause the inflammation just drip drip inflammation which isn't then cleared out - and eventually the dripping tap fills the bucket and it overflows and you are back to the start.
My doctor said the same thing regarding any kind of ill side effects at these low doses. I wouldn’t even hesitate to up steroids if I felt like a flare was coming on. I only take ibuprofen the day after I taper and never for longer than 2 to 3 days And only if I need it which has been seldom these days.
I feel your pain. my experience is not dissimilar to yours and maybe knowing that other people have gone through what you are will give you hop.
When doctors insist that its time to lower the pred than within a short time I feel pained, exhausted and devistated to see the quality of life dramatically dip. The very last place i want to go is back to my GP however i have found that unless I loudly, frequently, and even stridently express quite how much pain I am in then they assume any pain i have is managable and want to further cut the pred.
Recently however I have found an ally. After telling my GP that i simply could not function with the level of exhaustion , he said it was just part of the disease and i would just have to live with it.
i asked for a test to see if my adrenal glad still functioned, he wasnt keen but referred my to an endrocronologist She is great...amazing i found someone who understood what i was saying and put a stop to any further reduction for the next 5 months and telling me to increase any time i felt the need especially following stress or illness.
My GP phoned to call me in for an appointment on Monday morning to discuss my blood test results, heres hoping i dont need to argue my case again, ive a feeling it will be fine and the endrocronologists support will work in my favour.
I am on my way to recovery, i know i am and you are too, its just a rough path and any help we can get is worth taking. The prednisilone isnt perfect, does come at a cost but the cost is outweighed by the quality of life improvements it brings.
The only cases that I heard of shorter then a year where those who were put on a biologic. In all of my reading I have never heard of anyone having PMR for only six months!
There is some thought that PMR is not just a single form, that like multople sclerosis for example there are different sorts. Sometimes I suspect that there are patients who are told what they have is PMR when in fact it is reactive inflammatory arthritis - which is in response to some event, trauma or illness, and once that is resolved, so is the PMR.
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GCA and steroid withdrawal
could I have your opinion on this 
Very scared 
