Would very much appreciate connecting with someone who has opted for Non steroidal treatment for Polymyalgia.I was diagnosed 4months ago and have chosen a very healthy diet with the addition of curcumin and other supplements instead of prednisone. I have suffered extreme fatigue, night sweats, bearable shoulder and girdle aches and pains, hair loss and bronchitis and occasional panic attacks. However I am beginning to show some improvement and am hopeful this will continue.I feel I would benefit greatly from communication with kindred spirits who have declined the steroidal route.so please pass on your experience. Ariadne 8
Polymyalgia: Would very much appreciate connecting... - PMRGCAuk
Polymyalgia
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Ariadne8
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It is very unlikely you will find people on this forum who have chosen to dispense with pred for PMR. There are no "non-steroidal treatments" for PMR, just a decision to manage without.
While I do appreciate the fear of pred and desire not to use it, the inflammation in PMR can cause all sorts of long term sequalae if left uncontrolled. It is not possible to know which blood vessels are affected without some very specialised imaging but it is very likely that arteries are affected and, with time, the uncontrolled inflammation can lead to peripheral vascular disease and even aneurysms. PVD can be managed to a degree but it is also life-style threatening and can even become life-threatening. Aneurysms are, by definition, potentially life-threatening. Although it is disputed, some experts are of the opinion that unmanaged PMR can progress to GCA - and it has far more serious effects even leading to stroke and cardiac problems.
It is not a simple case of pred is bad, no pred is good. The inflammation and immobility in PMR lead in the long term to other problems: immobility is one of the primary risk factors for osteoporosis, leads to weight gain and muscle weakness, as well as other problems. Pred manages the inflammation and helps avoid some of those, allows more mobility and freedom from pain which allows a more normal life style and quality of life which may avoid depression and other problems.
I'm not preaching hell and damnation here - I had 5 years of PMR without pred. Not out of choice but because it seemed beyond my GP to recognise what I had despite being almost textbook in presentation other than normal bloods. Eventually I worked out what it was myself and was referred to a rheumatologist. He wasn't convinced - but did allow me to have a 6 week taper of pred. The first 15mg dose achieved a miracle - I could walk up and downstairs normally in 6 hours! Nothing would persuade me to return to the pre-PMR days. 5 years of daily pain was exhausting and reduced me to being able to go out unless I could drive there - I couldn't walk more than a couple of hundred yards without severe pain, even shopping was a problem. I wasn't entitled to disability benefits or even a blue disc - I became housebound and isolated.
PMR does usually go into remission eventually. But after 10 years mine is still here and, last time I looked, very present. I'm on a dose of 4mg pred. I have no side effects - no change in bone density, the weight I gained on one sort of pred has all gone on another and with very strict diet. I feel well and have a normal lifestyle.
Don't chuck the baby out with the bathwater - pred isn't all bad.
I am afraid there is no way I could have managed without pred although I have a healthy diet and use turmeric on everything, well nearly everything. Your symptoms seem worse than the side effects I get from pred. I was also worried about the prospect of GCA and other vascular problems. Pred allows me to lead a reasonably normal life and I have been able to carry on working. If you are lucky your PMR may go into remission reasonably fast and you will get away with not using steroids.
CelticPMRGCAuk volunteer
Ariadne, you are so lucky that your level of PMR is not so severe as to render you totally immobile, and therefore provide you with a choice regarding treatment.
I remained undiagnosed, therefore untreated, for very many months rendering me completely bedbound and travelling to rheumy appointments by ambulance and wheelchair which in itself caused excruciating pain. I did recover spontaneously in just under a year but it was very short-lived and the symptoms returned along with new symptoms, including terrible head/jaw pain, vomiting and rapid weight loss, and finally both PMR and GCA were diagnosed. Steroids got me out of bed and out of a wheelchair and saved my eyesight, giving me my life back, not quite as before but a huge lot better.
So, although it is wonderful to hear that you are able to function normally without steroid treatment, do please remain very alert to the fact that whilst those with treated PMR have around a 3 in 10 risk of developing GCA, non-treatment raises that risk to 7 in 10.
Obviously, it's a very personal decision whether to opt for steroids or not, but I do hope your improvement continues and you then remain well.
Good luck Ariadne 8. I have reduced to 1mg through necessity because the steroids together with use of ibruprofen for a short time have wrecked the lining of my stomach. I have lost two stones in weight simply because I can eat very little and no longer dare to take prednisolone. The PMR is not controlled but I am managing with cocodamol at night because that is when the pain is worse, and paracetamol once or twice in the day. I also use Pernaton gel and Arnica gel which I think help a little. My muscles became very unconditioned because I was so unwell and immobile with my gastric problems but I am now making myself walk a mile or so every day and am getting better. i found the gastric problems marginally harder to cope with than the PMR, bad though it is at times, but my stomach is gradually healing although I am still on a very restricted diet. I can still lead a normal life though and can now do everything I want to do....just not too much in a day with plenty of rest in between, and I remain full of hope for the future in a life without steroids!
Skodadet, I am so sorry about your gastric problems. Couldn't you have had injected steroids or possibly enteric coated ones that could have saved gastric problems?
The 1mg tablets don't come enteric coated...injections haven't been suggested and I didn't think of them.
I am not surpised you had gastric problems, taking any NSAID's with pred is a definite no- no. Where you prescribed them or did you buy them over the counter?
Has you GP not prescribed Zantac (new name Ranitidine) which is the best drug for healing and protecting your stomach. My brother had a duodenal ulcer and was prescribed this medication and his, like many others, ulcers healed and he has had no more problems for the last 10 years.
Hi sambucca. I knew I was taking a risk with ibuprofen but took as few as I thought I could get away with and always on a full stomach. Have been on Lansoprazole for most of the last four years but discovered they weren't working. Neither did ranitidine. On omeprazole double dose now.
Do not despair. I have a friend who managed it with the help of her husband and the Margaret Hills method and was pain free after 18months. I on the other hand had already started on high dose steroids(prednisolone) and was locked into them so had to continue. Yes, it was a great relief when I started taking them and I continued for two years reducing until I was free from the disease but after about 3 months of being off the steroids the after effects are now rearing their heads and I have pain again in my shoulders and back and very weak muscles etc etc.My blood tests are fine so it is considered I have not got the PMR back so what it really is I do not know. The doc says it is the after effects of the pred and it can take up to a year to feel right again.
leonardswife, your Dr is correct in saying that "it can take up to a year to feel right again" after PMR and steroids. Not only do our adrenal glands have to get up to speed with manufacturing their pre-PMR/steroid amount of cortisol, having been suppressed by the long term steroids, but many hormones also have to return to normal. I felt really well almost immediately after coming off steroids, possibly due to having remained on 1mg/half mg doses for about a year before stopping altogether.
However, if you are experiencing returning pain in your shoulders and back, then that does sound suspiciously PMR-ish. As for your blood tests being fine, it is quite possible to have PMR in spite of normal blood test markers - around 1 in 5 patients never have raised markers. Even if you are someone who had raised markers the first time around, it isn't inevitable that you would have a repeat of raised markers.
One thought is that you could perhaps have a Vitamin D deficiency which can cause pain similar to that of PMR. So, if you haven't had a Vit D blood test, do ask for one. Even if you are taking a small dose of Vit D, there is no guarantee that your levels are within the normal range - you need the blood test to confirm that. Plus, if deficient, the usual small maintenance doses of Vit D are not sufficient to restore levels to normal. Such deficiency needs a 3 month course of high dose Vit D3 to return levels to normal followed by a maintenance dose to keep them there.
I do hope you aren't succumbing to PMR for the second time, but that is exactly what has happened to a member of my support group after being off steroids, like you, for a few months. However, she has been prescribed a 5mg daily dose of Pred and happily that has proved sufficient to nip things in the bud.
It isn't possible to say the recovery was due to anything specific - PMR can and does go into remission on its own. It's like a cold which lasts 14 days with treatment and 2 weeks with.
If you have returning symptoms after 3 months it is most likely returning PMR. The blood tests may lag well behind the return of the stiffness and pain - and they may not rise at all, as Celtic says, 1 in 5 don't develop the "acute phase response" and just because it happened before doesn't mean it will happen in the future.
No-one is "locked into" taking pred - anyone can choose to reduce the dose and stop if that is their desire. Two years is a pretty short period - many of us on the forums have been on pred for 5 years or even more.
Your doctor would be better providing you with access to physiotherapy to build up those muscles instead of telling you some very poor physiology. The "after effects of pred taking a year to sort out" is far more the effect on the adrenal glands and that system getting itself back in trim. I am still on pred - and over the last 3 years I have graduated from barely being able to stagger into the village on crutches (some 200 yards) to being able to walk for 4 or 5 hours a day on a sight-seeing tour in China. I'm not boasting - but it was done by my medics not telling me it was evil pred and I'd have to live with it. It was done by starting with aquatherapy and built up bit by bit by walking more and more each week.
I am surprised that you picked me up on a couple of things in my first and last post. I said 'locked in ' because when I was uncertain if I had taken my dose one morning I nipped into the chemists and asked their advice. He said that I should take another slightly lower dose because missing a dose could have a drastic effect on the bodies organs even to the point of them shutting down. It frightened me and I never missed another dose. I was treated by my GP from the onset of PMR she said I could sit at home and suffer until it had burned itself out and pointed out that I may get GCA which may affect my sight .So I started on 35mg of Pred and reduced down very slowly indeed over the two years having blood tests before reducing( according to your advice )each time and managed to continue my work as a Carer. I stopped after 2 years on my GPs advice after feeling good and clear blood tests for a while. Another person criticised me saying that I had 'recovered from the illness' and wrote that you never really recover it just goes into remission, but according to the Arthritis Society on the subject of PMR you can recover. I am sorry that it has taken so long to reply but it has been on my mind so I thought that I would get it off my chest .I have found your site helpful although have not contributed much.
I'm sorry if I have upset you. Perhaps you have also misunderstood me. Please don't feel I am aiming this at you personally - but I feel a need to clarify things a bit.
I must disagree with the rather sensationalist and scary statement made by the pharmacist. Missing one single dose is extremely unlikely to lead to us being seriously ill and the vast majority of us have done it at one time or other. One lady on another forum forgot her tablets on a trip to the UK and went for 4 days with none rather than go through the performance of finding a doctor there - she was fine but she did get a telling off from the rest of us when she got back and told us! Simply stopping taking pred altogether from one day to the next would very probably make us ill as the body does require some time to settle down to making its own but it won't happen overnight and it does depend to some extent what dose you are on and how long you have been on pred.
I meant the not being "locked in" in the sense of being forced to take it forever - we're not and even if you start or have been on it for some time you can reduce steadily and much faster than we speak about if you are just aiming to get off pred. The slowness we suggest is to avoid the discomfort of steroid withdrawal and to more accurately identify the correct long term dose to manage PMR.
The comment from the other lady is quite correct - the autoimmune disorder goes into remission and the symptoms go away. You may describe that as a cure if you like but, as with almost all autoimmune diseases, the potential is there for it to return at a later point. I have just looked at the Arthritis Society PMR page - nothing there suggests a cure to me.
I must also point out that their page has quite a few errors - it claims the association with GCA is less than 5%, it isn't, about 1 in 6 patients originally diagnosed with PMR develop GCA at some later point, which is 17%. They are also very out-of-date: GCA does not merely affect the arteries in the scalp and leading to the brain. GCA can affect any artery with an elastic component to its wall and, in fact, shows a predilection for the arteries in the thorax, especially the aorta and pulmonary arteries. The symptoms list is also inaccurate: headache is the presenting symptom in only about a third of patients although it will eventually occur in 2/3 while PMR is the presenting complaint for about a quarter of GCA patients, occurring in well over half of patients later. Far too many doctors believe that if you haven't got a headache it can't be GCA - a misapprehension we'd like to dispel.
You wrote, "until I was free from the disease".
You are never free from the disease, there is currently no cure and no known cause, it goes into remission and can and does come back. Most auto-immune illnesses are exactly the same, no cure but remission.
So am surprised that your Doctor says it is the after effects of pred.
I started on 60mg per day and was on pred for five years and I have had no after effects at all. I wonder what you Doctor would say if someone who was on pred for life, as without it they would be dead, was in the practice.
I'd like to think that this disease could be dealt with through diet, exercise and so forth. I lived the sort of life where, if that were the case, I should never have become ill. Presumably certain stress in my life triggered the illness, and I didn't get diagnosed for about a year. Perhaps right at the beginning therapeutic doses of some of those natural treatments would have helped. Who knows? In the meantime I continued to eat well, exercised through the pain (including defeating a physiotherapist who said I should go to a naturopath) and basically did everything I should do to be and stay healthy. When I read the natural treatments for PMR I just sigh and think, well,, that's how I've lived for years. All I can say is the good lifestyle may have mitigated some effects but now I feel that the prednisone is indeed taking away a lot of that. So it is a balancing act. I could not have continued as I was. I was becoming dangerously thin, and starting to lose muscle mass. Now that I am on cortisone, I am doing everything I can to mitigate the potential side effects. I hope you keep in touch with this group because if there is a way that we can reduce our reliance on pred I think there will be 100% joy! But I doubt that many, if any, of us would have been able to cure ourselves through natural means alone. It does seem counter intuitive to me that a disease that responds so well to cortisone is actually treated by a medicine that completely suppresses the body's natural production of much more complex forms of that hormone. Obviously a lot more research is needed, and maybe someone who can do something about that will finally realize that even aging females deserve quality treatment.
Hello there, I am 76 and was diagnosed 7-14, started Pred 20 mgs in September 14 and weaned off in late Jan due to shoulder surgery in Feb 2015. Went back on it in march and asked to be tapered off in May and finally got off of it late July. Yes, I too have the neck, shoulder and wrist pain and using 1500 mg 500mg 3 times a day of Curcumin on a empty stomach to see if it helps.
It's hard to justify taking Prednisone because it raises blood sugar(diabetes) blood pressure, causes cataracts and bone loss, and Dr's call this a safe drug, are you kidding me. There is no such thing as a safe drug and just because it has been approved by the FDA does not mean that it is safe.
Many people have died from prescription drugs. There is a big class action law suit against Lipitor and Xerelco but Dr's are still prescribing it. This PMR has caused me to lose a lot of weight and my eyesight is not what it was 1-2 years ago and I never did gain any weight from taking Pred. Good luck and God bless, keep me posted on your progress.
Found an interesting Facebook posting from a few years ago. Hopefully this URL will be allowed and you can access the page:
facebook.com/notes/sharon-m...
As a prednisone user I am definitely going to follow the advice here as I'll do whatever it takes to reduce pred without suffering withdrawal or relapse.
From someone concerned with the inflammation of RA:
Hello Ariadne8, I was treated by a chiropractor for over a year and at great expense for the excruciating pain in my neck, shoulders and back. It didn't get any better and I stopped seeing him. 2 months later I developed many other symptoms and extreme shooting pains all over my head. I had 4 ocular migraines within 24 hours. My GP. had been trying to diagnose what was wrong with many blood tests to no avail. Finally he had the brilliant idea that it may be GCA and immediately put me on 80 mg prednisone a day because he feared for my sight. I say brilliant because it is a hard disease to diagnose, and he had never had a case. I had lost all of my energy and a great deal of weight. Of course cancer was suspected.
Upon my first dose of pred I lost all of the PMR pain. When I went to my first Rheumy visit he asked me , "have you ever had pain in your neck and shoulders.?" I laughed because it had been so extreme for a year and a half by then. Knowing what I now know after a lot of research and help on this site I believe that my GCA flared up because of no treatment for the PMR which was undiagnosed for so long.
I got many of the side effects from the prednisone, including moon face and weight gain. I hated that as I am very vain.!! After 14 months I am now down to 9 mg per day. I have cut out carbs. am exercising, lifting weights and walking between 5 - 8 miles per day. My weight has come off and honestly I feel better than I have in years ! I am 77 , still work, and am very fortunate that I am otherwise in very good health.
Bottomline, I would urge you to take the prednisone for your PMR. From what I read it is easier to get the dosage down for PMR than it is once it is GCA, Not to mention what could happen with GCA.
We each have the right to do what we deem right for us of course, and I wish you the very best of health and very soon.
Hi Ariadne8,
I didn't feel confident in my GPs diagnosis and hated the thought of steroids. I really resisted Pred. I tried healthy diet, went to a great physio who did both Bowen and acupuncture with me and this led to a decrease in most day to day pain. However for me this was not the total answer, after a particularly bad week my physio advised i returned to the Doctors and saw a particular GP. I did this, he started me on Pred 30mg a day and referred my to a Rheumatologist , all i can say is thank goodness!
What i learned was that i wasn't being soft or lazy or just giving in to pain, the gradual increase of pain had worn me down and after only 2 days on Pred i could remember what normal was, it is so much better a life with less pain.
Good luck with however you manage your condition , all i can say is that suffering was not good for me and was really preventing me from leading my life. I only started taking the meds on Monday and this is Thursday, I am so much happier and more productive
Hello Ariadne, after being forced to use the horrible steroidal Prednisolone which nearly killed me, I waned myself gradually off it and refused to take any more. My Doctor realized that I was allergic to it and was willing to prescribe me Norspan pain patches. I live with the symptoms you are describing, but manage well. I keep the doses between 10 and 30 mg, depending how bad the pain is. I take enough to get the edge of the pain but not as much to feel stoned. I also live a very healthy diet. No gluten, very little dairy and no prefabricated food. I have been doing this now for over 2 years and have a relative good quality of life. Nevertheless I still suffer badly under night sweats and panic attacks. The latter I have under control with a herbal treatment called 'Anxiety Relief' by 'Ethical Nutrients', which I take 30 min. before I go to bed and sometimes in the middle of the day, depending how bad it is. I find it just wonderful. Otherwise I have no side effects and I noticed my pain increasing when I am under a lot of emotional stress.
I personally consider Prednisolone a bad poison. Many older people ended up with diabetes and catarax (how do you spell that?) after using it for a while. I had every side effect under the sun and it would have killed me if I would have continued taking it.
My very best wishes are with you.
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