After many years of suffering from various aches and pains in my neck, shoulders and back, I am only just now realizing that these symptoms have a name – Polymyalgia Rheumatica. I feel young in so many ways and have always lived a healthy, active lifestyle so find it hard to accept that I have such a condition, yet I do so now I am here to learn ways to deal with it naturally (refuse to take steroids). My grandfather suffered from this also so perhaps I am the lucky one in the family who has inherited it! Other conditions include osteoporosis and low thyroid for which I take natural or compounded meds, AND I am due for a hip replacement next year...so I'm told.
Hi e4health and welcome to the forum, I am sure you will find it as supportive and informed as I have over the past 2 years. My diagnosis is PMR and I have tapered down from 20 mgs of Prednisalone to 7/6 mgs.
I was very reluctant to take steroids as are most people but I got more and more disabled in that I couldn’t get out of bed or the bath unaided, I was in constant pain and couldn’t lift my arms above my head. I was very stiff as well, shuffling around like a very old bent over woman. There is no effective alternative to steroids but there is plenty that you can do to offset the side effects and support your body through this disease process. People will be happy to share their tips with you as time goes on. I have discovered that it is actually quite dangerous to leave the inflammation of PMR untreated as it can give rise to more serious conditions. However, I wish you well in whatever you decide to do for your own health and strength, you certainly look very fit in your photograph!
The effect Prednisalone had on me was nothing short of miraculous. Within 48 hours I was out of pain and flexible again. The depression that had developed over the months of pain lifted immediately ( never to return touch wood). I would rather do battle with the effects of steroids for a limited time than try to handle untreated PMR.
I have Graves Disease and take Thyroxine for life since radio iodine treatment knocked out my Thyroid Function. I take Adcal ( Calcium and vit D 3) to support my bones.
Thank you SheffieldJane – it is good to hear of other's experience. I am very early in my research on this condition so have much to learn.
best wishes,
~e
Welcome and good luck on your "natural" healing journey. I'm sure you'll receive a lot of great advice, hear about a few personal experiences and be exposed to some strong opinions. Since I am fairly new here (November 2017) I'll leave all that to the experts and just wish you good luck.
Welcome to the community, e4health. During your research of PMR, please learn about it’s naughty sister, Giant Cell Arteritis (GCA). No matter which route you take for PMR, natural or Prednisone, you will need to be on the lookout for GCA. If she appears, there is no choice and on to Pred you go ASAP (to save your vision, etc)! Best wishes to you.
I’ve been on the forum since June and have read post after post indicating that there is no other form of treatment then Prednisone. Unfortunately, natural remedies simply don’t work. If you want relief take the drugs. Pain and martyrdom don’t help!
Exercise with a very slow build helped me with pain. However, as much as I didn’t like it, I had to start at a snails pace. Try physical therapy, massage and Tai Chi/Quigong. I found supplements to be useless. Changes in diet just made me feel in control, not sure of the relationship between diet and inflammation.
I'll be upfront (as usual): if you are looking for "natural" ways to manage PMR then you are probably in the wrong place. In the last few months alone there have been 4 or 5 people who were going to do it the natural way - and every one of them gave in and took pred eventually.
I lived with PMR for 5 years because I was young and atypical in having no raised blood markers. The doctor suggested everything: "your age" (50???), depression, somatism, blah, blah, fibromyalgia was the only thing that wasn't mentioned. Then I had a flare and was in bed for a week, barely able to get to the bathroom never mind do anything else. I could barely walk even after that and had to stop driving for another (totally wrong) diagnosis and that was when I found how dependent I was on the car. Without it I was housebound. I could do nothing for more than a few minutes without sitting and resting. I was in constant pain and depressed. Before I had gone to the gym every morning Mon-Fri and done an aquafit class at my level - and that left me mobile enough to function. Without it I seized up completely. I crawled up stairs on hands and knees and stomped down like a toddler. I could barely get dressed and toileting myself was almost impossible.
It isn't as simple as "pred bad" "no pred good". It manages the inflammation in your body which is damaging your blood vessels and which in the long term increases your risks of peripheral vascular disease and even some cancers. So in the great scheme of things - refusing to take pred is robbing you of a fairly normal and relatively pain-free life and increasing your risks of other things in the future. PMR brings immobility, which leads to weight gain and increases the risk of osteoporosis. You become depressed, bad tempered. So many things that pred is blamed for are just as likely with PMR. And most of the things pred is blamed for are actually NOT necessarily due to pred, they may have happened anyway:
Not managing PMR with pred does increase the risk of it progressing to GCA. And as has already been mentioned, if you develop that you will have to take pred at high doses or risk losing your sight. No ifs or buts.
Your choice obviously - but don't cut off your nose to spite your face!
Welcome e4health to this extremely helpful forum,lagree with all the other comments and advice that has been given to you.PMR will not get any better just worse until you are prepared to take prednisolone. I always hoped that l would never have to take steroids but can only say that being unable to live a normal life with PMR l am very grateful that the preds are available to relieve it.
Welcome. I am also new to this, having been diagnosed in Nov 2017 with sudden onset PMR and ??GCA. Because I have a scientific background I was keen to learn as much as I could about everything associated with PMR. To keep it simple, PMR is a disease characterised by overproduction of Interleukin-6 (a cytokine) which can be either inflammatory or anti-inflammatory. I started researching inflammation in depth, looking for ways to calm my immune system (in addition to taking the prednisolone). There is loads of information available and some of our experienced members have produced lists of references which you can draw on and begin you own journey on the information highway!! I think the best suggestion I can make is that you fast track your knowledge and understanding of PMR (and GCA) because it is clear that some patients are not getting a lot of help and support from their GP's or consultants.
My research leads me to believe that high doses of Omega 3 polyunsaturated fatty acids do decrease production of inflammatory eicosanoids (prostaglandins, thromboxanes and leukotrienes) and cytokines. Too much Omega-6 in the diet upsets the metabolic pathways of the enzymes which would normally metabolise Omega-3 and they then preferentially convert the Omega 6 to arachidonic acid which is the major substrate for eicosanoid production. At sufficiently high levels (some papers say over 2g others 6g daily) Omega-3 PUFAs inhibit arachidonic acid production and also create anti inflammatory mediators called resolvins. I have also read that endorphins (happy hormones) are thought to inhibit T-helper cells and therefore reduce production of auto-immune antibodies. Stress (which increases cortisol production) is also thought to increase production of IL-6 and switch it from being anti-inflammatory to pro-inflammatory. You will also learn that there is a circadian release of IL-6, melatonin and cortisol, with plasma concentrations of IL-6, IL-8 and TNFalpha peaking between 0400hrs and 0800hrs.
So what does all this mean? What do I do?
I take Adcal, Magnesium lactate and Vitamin K2(MK-7) for bone health. Refused Biphosphonates. Paid for a private DEXA scan (£65 at London Imaging Centre) because Rheumy said there was no point doing one as steroids would cause osteoporosis so I might as well start taking Alendronic acid straight away. My results showed I have really good bones for a 60 year old! and AA is very much contra-indicated in someone with such good T-scores.
The balance of Omega-3 to Omega-6 in our diet today has become too skewed in favour of Omega-6. We should be aiming for a ratio of 1:4 as a minimum and some nutritionists say that for those with inflammatory conditions it should be 1:1. I take a good quality multivitamin and 3 very high strength Omega-3 fish oil capsules daily in addition to oily fish in my diet. In view of what I have said earlier, the last thing I want is to have too much arachidonic acid floating around my system. My immune system is out of sorts as it is, without throwing the potential for prostaglandin production into the mix.
I take prednisolone very early in the morning between 3am and 5am, depending on when I wake up to spend a penny. I'm not obsessive about it but I have found my sleep is less affected the earlier I take it. In the early days I had minimal breakthrough pain in the morning and felt generally better than if I took it at 8am.
I walk my dog twice a day, one hour each walk and am able to lead a fairly normal life doing chores at home and in the garden. I do yoga and am changing my attitude towards life by trying to be upbeat even when things aren't so good. I have learned that PMR loves hyper-active, high achieving type A personalities so I am learning to RELAX. My view is that over the past 40 years I have lived and worked in such a way that my body just can't cope with the stress and adrenaline anymore. I got myself into this mess so I have the capacity to get myself out of it. My GP says I'm delusional!!
My journey has been a walk in the park compared to some. I don't get the fatigue that many suffer or the pain. I haven't put on weight either, in fact I've lost 7lbs because I have cut refined carbs from my diet, stopped snacking, reduced tea and coffee (and wine!) intake. I drink plenty of water and try to follow the principles of "The Clever Guts Diet" to improve the quality of my gut microbiome. (Read Dr Michael Moseley's work and watch his tv programmes).
I have more problems from the steroids than the illness itself, namely my legs cramp if I walk too fast, my teeth are really sensitive to cold, my bladder control has suddenly become non-existent, I have developed a fine tremor in my fingers and I've just learned that my intra-ocular pressures are slightly raised. All of this will disappear and is already doing so as the steroids reduce. I know these are steroid side effects because they are listed in the data sheet and many others get them too. They only appeared once my Rheumy increased my steroids because he thought I might have had a GCA episode before I saw him based on the fact that that I had an occipital headache and tense neck for a couple of days when I had flu before all this started?!?! But one cannot be too careful.
I don't know if the supplements or diet have helped, but in general I feel healthier and more at peace than I have for years, plus I have learned loads about myself, so it's not all bad!
Good luck.
PS Apologies for not referencing my statements. All is verifiable and from academic sources published on the www but I just never bothered at the time. Others will not be impressed!!
"I have more problems from the steroids than the illness itself, namely my legs cramp if I walk too fast, my teeth are really sensitive to cold, my bladder control has suddenly become non-existent,"
I'd dispute they can all be laid at the door of pred. I suffered all three in the first 5 years of PMR so I can be sure it is more likely they were due to PMR than anything else, I wasn't on pred. There is a lot listed on the data sheet that may not really have been due to pred - just they were noted while the person was on pred. This work
found that most of the effects claimed for pred at PMR doses probably would have happened anyway (except for cataracts). The tendency is there - maybe the pred accelerates it, but it would have appeared sooner or later.
Very interesting. I was wondering what your current dose is? I must say it's refreshing to read about a journey which has been going well. I, too, have found some symptoms which I didn't experience during about 14 months undiagnosed. At a certain dosage of pred (I think it was around 4 mg but can't really remember now) I had painful lower legs when I walked. BUT I had had muscle cramps (feet, calves) long before PMR/pred, and these seem to have gone away now that I'm more aware of the need to balance calcium and magnesium. Same with sensitive teeth, long standing. And in fact not as troublesome now that I take Vitamin K2 and all the other things I've done to improve health while suffering from PMR. I had increased ocular pressure with pred, and it is now well within normal again, no treatment had been needed. However I have had a lot of fatigue (didn't prior to pred, not until hitting the 7 mg dose level) and am probably in denial about compromised adrenal function, hope it isn't going to turn out to be permanent, time will tell.... And I am definitely a lot weaker and muscles prone to injury, and for this I squarely blame pred!
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Healing Achilles Tendonosis
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Newly diagnosed but don’t want to take pred
