PMR treatment without steroids

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Hello, I'm new. I'm pretty sure I have PMR and have a GP appointment today. I have all the symptoms and my blood results have come back abnormal.

I really do not want steroids! The side effects sound horrendous, but the main issues are: I spent the best part of last year losing weight and eventually lost over 20 pounds. This helped with my chronic mental health problems which I have struggled with for most of my life. I had a relapse over Christmas and new year, but have improved again. I fear that pred and weight gain will throw me into another vicious cycle of depression and weight gain.

I am also terrified of osteoporosis as my friend died from it a couple of years ago.

Would steroid shots avoid any of these problems or could I try to manage with strong NSAIDS? I'm already feeling 'delicate' and vulnerable and I've not even been prescribed anything. Can I refuse daily toxins (pred) in the hope of avoiding the misery that has plagued my life?

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  • Posted

    Pansy, if you have PMR then only steroids will give you relief from the pain and it's a shame that the downsides of steroids are at the front of your mind.

    Nobody escapes all the side effects but, equally, nobody gets them all. You cannot be forced to take steroids but living with the pain of PMR won't do anything for your well being, physical or mental either.

    You will be prescribed protection for your bones and I know from personal experience that osteoporosis is not inevitable. Weight gain is not inevitable either but it's a good idea to think carefully about your diet.

    I hope you have a GP who is sympathetic and whom you trust. Speak to him/her about your fears.

    It's good that you have found this site; there are some very knowledgeable people on here all of whom will share their experiences and give you encouragement on the down days and congratulations on the good ones. Keep coming back.

  • Posted

    I do appreciate your fear - but this is something you need to discuss with your doctor. There is no good alternative to pred for PMR - unless you can access the biologic tocilizumab/Actemra but the potential side effects of that do seem to me to be out of proportion when PMR and the lowish doses of pred are concerned.

    If you are concerned about pred side effects - I suggest you look at the potential side effects of NSAIDs. I have a friend who ended up in A&E after 3 doses of ibuprofen prescribed by her GP for PMR pain. And I can tell you from personal experience - they rarely even take the edge off the pain of PMR and do nothing for the stiffness. Their long term side effects can potentially affect the cardiovascular system and kidneys and the risk of gastric bleeding is quite high.

    Neither weight gain nor osteoporosis are inevitable with steroids - at my last dexascan I had been on pred for over 7 years and my bone density had barely changed from what it was 2 months after starting pred. I gained weight originally with undiagnosed PMR, 5 years of it, as I couldn't . When I was finally given pred I did not gain any more weight but it redistributed to the usual places when I started pred. However, at a later date I moved to another country where prednisolone is not available and was switched to methyl prednisolone - then I gained quite a bit of weight and it didn't control the PMR symptoms for some reason. My GP switched me to the only form of prednisone available here - and I cut carbs drastically. I lost 35 lbs over the following year or so with the fat deposits around my face and midriff simply melting away. I could do with losing a bit more weight but I'd have to cut carbs more and at present I am maintaining my weight fine.

    Please don't imagine that injections are a magic answer. They can be used for management of PMR very successfully and are included in the 2015 Recommendations for the management of PMR. But they also have side effects. What I can tell you is that different people react differently to the various forms of steroid - I have had no obvious side effects due to prednisolone (in the UK) and prednisone (here). Nothing at all. Most side effects of steroids can be managed and minimised when you know how. Bone density should be monitored - it should never get to the stage of causing serious problems and definitely not kill you.

    But as I say - this is something to discuss in detail with your GP. And possibly request referral to a rheumatologist if pred scares you so much. PMR can be lived with - I did for 5 years but it was very hard and very painful. That alone does nothing for your mental health - I can tell you that - nor weight management. I became isolated and PMR itself is associated with depressive mood which got worse. But the worst is that untreated PMR is 7 times more likely to progress to GCA. And if that were to happen then you have a very stark choice: take pred, at a much higher dose than is required for PMR, or run the risk of losing your sight, So choosing to ignore PMR and not take pred is not a simple choice.

  • Posted

    Hi - I tried lots of alternatives before succumbing to steroids which made things 80% better immediately. However I was keen to get off them and tapered down as quickly as possible. Within approx 18 months I was able to do without them and this has been the case for over 6 months I think. Hopefully it won't come back (although it has never gone away 100% but nearly at times)

  • Posted

    I was prescribed Naproxen for undiagnosed ailments which I took for only a few days, and then Ibuprofen, which I took for a year before PMR diagnosis. 15 mgs prednisone gave me such relief. Unbeknownst to me, the NSAIDS gave me an ulcer which erupted during knee replacement surgery. The following year when I abruptly stopped taking a PPI for the ulcer I ended up in the ICU for two days. Stomach problems are life threatening.

    Prednisone prevents PMR from developing into Giant Cell Arteritis (GCA) which can cause blindness. I am 80 years old, diagnosed when 76. My weight is lower than when diagnosed and can be controlled with diet. My experience is that hair loss will cease with lower doses. I am currently on 6 1/2 mgs after a few flares, reducing slowly. A 2017 Mayo survey found that PMR/Pred users were no more prone to side effects than those who did not have PMR with the exception of cataracts. It was guessed that PMR patients had more eye exams because of the GCA possibility. I had cataracts removed before ever having PMR. This study also found that the average duration of PMR was almost 6 years. Perhaps Eileen can give you the web site of this study and a more detailed explanation.

  • Posted

    If you are diagnosed with PMR. and if they start you on 15 mg you shld feel immediate (24 hours max) relief. That will be good news for you. At least in my experience -- and I was dxed 3.5 years ago -- prednisone starting at 15 mg/da had 0 side effects. It is best to maintain an exercise regime -- maybe 40 minutes walking spread over the day, briskly -- and eliminate refined carbs. But you can still have a thin slice of homemade carrot cake or a piece of chocolate once or twice a week. There is a wealth of good info here to support you in your journey. Some of the healthy lifestyle choices will benefit your other chronic conditions too. You might even consider a diet geared to auto-immune disorders. Depression is often part of the A-I profile. Pls do stay in touch. You are among friends here.

    Wishing you well!

  • Posted

    Pansy,

    I've been on pred for a year, and have not gained an once, although my face looks rounder, but that's good for the old wrinkles. I already had osteoporosis, before the pred. They gave me alendronate acid, for that, but stopped taking it after nine months, because of what I read about it. I have been faithfully taking raw calcium supplements, and a plate full of others for the old bones. Hopefully, I can get another dexa scan this year, to see if it has improved or not. Like Eileen has said, not everyone gets all the side effects. Good luck.

  • Posted

    Like you I was reluctant to start steroids because of the side effects. Yes, I gained weight, my hair thinned, my face had the Cushingoid look, the neck hump etc. . but it has all improved and my hair has grown thicker again. Today I had a routine eye test and in the almost 4 years I have been taking Pred there has been no damage to my eyes. That was such a relief to hear today so it's not all bad and we don't all get the side effects. A friend actually lost weight on Pred. I hope you are able to come to the right decision for you. As Eileen has mentioned it is best to discuss it all with your GP who will know your medical history

  • Posted

    My sympathies go out to you! About 8 years ago I was in the same position. I researched patient forums (not many) on PMR and found most people were not asking how to treat PMR, but how to wean off steroids. My research was alarming; with daily steroids for up to 4 years, which is what I was told was likely, I had a 2/3 chance to get a major permanent disease like osteo, or diabetes. I decided to avoid those and go to alternative medicine. I used homeopathy, acupuncture, wonderful trigger point massage from a massage therapist trained in that who could ease the trigger points without causing more pain, and many more modalities but I think those three helped the most. I also read in a French medical journal about a study that said if NSAIDs are enough, then they are a good choice for PMR. Later I discovered functional medicine and it has been a godsend, really boosting my health. I discovered that I had leaky gut syndrome which was causing all kinds of inflammation. I have been free of PMR for four years as measured by blood testing. Better yet, instead of having an immune system compromised by steroids (I read that they shut down your adrenals after only 2 weeks), my immune system rocks.

    Best of luck to you,

    Jan

    • Posted

      You are welcome to your opinion - but I have to pick you up on adrenal function.

      It takes a couple of weeks at very high doses for adrenal function to be slowed but a couple of months at PMR doses. The effect is like your heating boiler not running the heating as long as the fire in the woodburner is warming the room: the body knows it doesn't need any more corticosteroid than is already present so it doesn't make more. It also has very little to do with your immune system except it is somewhat damping down the immune system activity that is attacking the body and causing the problem in the first place and mopping up the inflammation created. Other than PMR I have no immune system problems - I almost never get a cold or other infection. Given the long term side effects of NSAIDs on the cardiovascular, hepatic and renal systems I'll take my chances with moderate doses of pred - which work well.

      I have been on pred for well over 8 years. My bone density had not changed significantly after 7 years, I have no signs of diabetes nor any of the other things so often alleged to be inevitable. I also use trigger point mobilisation therapies - it helps but for the add-ons, not the PMR. And on one of the forums we have had homeopathic practitioners who have told us they would not ever claim to be able to "cure" PMR though they can help minimise pred side effects. They all were taking pred themselves ...

  • Posted

    Also check the book by Audrey Pearson, My Four Year PMR and Prednisone Challenge.

    • Posted

      Hi Healingjan

      I am reading the book. Audrey doesn't seem to be having much success with 15mg preds so far and has been on them for some weeks. She is starting to wish she had continued with NSAIDs which did help with her pain....i'l read on and see if preds do eventually help...4 years to go yet....

    • Posted

      If 15mg isn't enough then 20mg or possibly more should be tried - to take into account the bioavailablity of pred. It can't be said not to work if it isn't used correctly!!!

      Just sayin'

    • Posted

      Hi Healingjan

      I noticed in the book that Audrey had surgery not long before the pain started. My pain started not long after i had surgery on my foot. Just wondering if surgery and anaesthetic which paralyses the muscles could be the cause of PMR.......it hasn't been verified..just a thought 🤔

    • Posted

      There is a similar condition that occurs post-op but it manifests a bit differently and resolves differently too. It has been investigated, is not an inflammatory condition so not the same as PMR - and anyone with raised markers probably doesn't have it.

      However - the trauma of surgery presents a considerable insult to the immune system and in some patients will be the final straw that breaks the camel's back and sends the immune system into freefall.

    • Posted

      Hi EileenH

      It would be interesting to see, by way of a graph, if patients can recall, who developed PMR after surgery, after a viral infection i.e flu, stomach bug or after a bacterial infection i.e chest infection, pneumonia or any other type of bacterial infection, also a traumatic experience and stress, or those who recall nothing that occurred and went on to develop PMR and see what the graph yields🤔

      It may, perhaps give a bit of an indication of what causes PMR. All the above involves the immune system, all but recalling nothing had taken place shortly prior to developing PMR......

    • Posted

      One year before PMR, my left hip started hurting after one block, preventing me from walking my usual many miles around town (I don't drive). The nurse practitioner said, without tests, oh it's arthritis and gave me 500 mgs Napraxon. I could not bear the strain on my heart and took the milder form, Ibuprofen. Midyear, A doctor gave me Levofloxcin for possible pneumonia that triggered PMR but was not diagnosed as such until months later.

      PMR on Ibuprofen: I lived on the maximum amount daily for a few months before PMR diagnosis. During that time I lost 20 lbs, had a torn rotator cuff that was relieved by a steroid shot, and had the PMR waddle from stiff hip muscles. I could not get up from the ground without pain when pulled up by my arms My knees swelled with fluid that was labeled arthritis (one knee was damaged by falls) and had to be drained. I saw a new doctor who suggested trying 15 or 20 mgs of prednisone and I became a new person. The rest of my story I told you previously in this chapter.

    • Posted

      Hi peggy_56092

      Ah! so pneumonia triggered your PMR..glad preds did it for you...eventually...🤗👍

    • Posted

      Hi BettyE

      Your PMR was not triggered by anything specific....so so far:

      Audrey: PMR triggered after eye surgery

      peggy: PMR triggered after pneumonia

      Mary : PMR triggered after foot surgery

      BettyE:PMR no triggers

      So far surgery showing most triggers..

      Thank you all for your input, but of course, we need many more patient triggers or non- triggers....👍

    • Posted

      I had had no surgery for 15 years previously. Nor infections.

    • Posted

      No! Levofloxcin triggered PMR. There have been many lawsuits against this drug for various ailements. PMR was not mentioned as far as I know.

    • Posted

      Prednisone improved my life within 24 hours or less after being on Ibuprofen for months!

    • Posted

      Hi peggy_56092

      Sorry....so it was medication that triggered your PMR...that's a new one on the list...

    • Posted

      Hi EileenH

      No triggers for you same as BettyE.

      Graph is changing now:-

      BettyE: No triggers

      EileenH:No triggers

      Audrey:Triggered by surgery

      Mary: Triggered by surgery

      peggy: Triggered by Medication

      So now we have 5 patients:-

      2 patients PMR no triggers

      2 patients PMR triggered by surgery

      1 patientPMR triggered by medication

      Interesting, would get more interesting with a lot more patient triggers. Still, so far we have 50/50 trigger with 'surgery' and 'no triggers' and 1/5th medication trigger....

    • Posted

      Just to muddy the waters a bit more, sorry! After almost five years of pred. for my second round of PMR and when I was down to 1mg. I had a hip replacement. It was wonderfully successful and I was finally able to stop taking the Pred. six months later. No sign of PMR.

      Two and a half years ago my partner of more than fifty years died. Obviously a very stressful time but no PMR and still no PMR. I count my blessings but cannot explain them.

    • Posted

      Hi BettyE

      Sorry to hear about your partner of 50 years passed away that must have been an extremely stressful and upsetting time for you. So glad your hip surgery was successful and PMR hasn't returned....

    • Posted

      Hi peggy_56092

      Levofloxacin can cause very painful muscles and tendons among other things. Muscles are affected by PMR so yes, the antibiotic could well have triggered your PMR....image.

    • Posted

      Hi EileenH

      Can you recall any stress or trauma pre PMR?

    • Posted

      Mary,

      Mine came out of the blue......or brown. I think Lyme's disease may have triggered it for me.

    • Posted

      Family life and house renovation - that I planned and acted as coordinator fir but there were no problems and it all worked out as planned.

    • Posted

      I developed pmr after being near death from a small bowel obstruction requiring surgery to remove dead bowel and antibiotics because the dead bowel released bacteria. so I AM NOT SURPRISED.

    • Posted

      Hi EileenH

      Renovating a property can release harmful chemical substances such as methylene chloride found in solvents, paint. Also dust from flooring, ceilings and walls. As you were co-ordinator you would have been on site and would have inhaled some of this stuff which can cause inflammation of the lungs and throat....but did you wear a mask as a preventative measure?

    • Posted

      Hi karenjaninaz

      Wow! you went through a tough time, yes all that stress, trauma and surgery would have contributed to PMR. Thanks for your input kjaninazour. Your cause can go down on graph as surgery trauma/ bacterial infection....you had a double whammy!....

    • Posted

      Hi patricia43291

      Lyme disease is a bacterial infection so yes, this is prob the cause of your PMR. Your immune system must have gone into overdrive same with karinjaninaz. Will put yours down as bacterial infection...thanks for your input patricia..

    • Posted

      I lived there! But it was the fourth house we had done so while it may have been part or the final straw it wasn't the only thing.

      Really - I promise you that you won't identify a single common cause for PMR developing like this. It has been looked at in the past. People developed PMR in the late 1800s, it was first described in 1888 - lots of things were not around then.

    • Posted

      I have GCA diagnosed last June. I believe stress triggered this. My daughter and grandchildren, coersive control and physical abuse. It was very stressful. I have not been diagnosed with PMR but suspect I may have developed since having cataract op and breaking g my leg! before Christmas.

    • Posted

      I think we would all like to identify the cause (s) of all our problems and the digital age has encouraged us to think it is possible. I'm with Eileen; it ain't going to happen.

      What I think IS possible and beneficial is to observe what helps to alleviate our symptoms. I had a miserable gut a few years back and finally traced it to coffee and white flour. That won't be any help to anyone whose indigestion is caused by fatty food or citrus fruit but if it encourages them to observe their own reactions that might be a good move.

      Hooray for this forum where w all get the chance to learn from each other.

    • Posted

      Hi EileenH

      What was the name for it in the 19th century?

      I, and i would think many other patients had never heard of PMR before they were diagnosed with it. I am not looking for a 'single' common cause but what might have been a contributing factor and what people were experiencing before onset of PMR. It seems that something may have been going on prior to PMR diagnosis as some of the patients on the forum have pointed out...

    • Posted

      Hi all,

      I did some research this morning and came up with this..It certainly bears out with what some of the forum members experienced before PMR disgnosis. imageI think it does help well you can pin point what was going in our lives prior to PMR diagnosis and have some idea what contributed to PMR. Instead of being at a loss as to why i had PMR... I am certain my surgery 5 months before diagnosis was the contributing factor for my PMR.image

    • Posted

      Hi val 26097

      Oh my goodness! You certainly went through a harrowing time of it. Yes, stress is shown to be a contributing factor to PMR . Stress was experienced by patients who have disclosed there experiences prior to PMR diagnosis. Even going through surgery as i did is a stressful time. We could include surgery as stress. I do hope all is ok with you now val and your GCA is under control. Best wishes..

    • Posted

      I also got horrible hip pain before PMR. I think the hip pain was the early sign of PMR, though. Full PMR came on shortly after I went into menopause, so I think menopause was the cause, and the hip sensed the oncoming menopause before the rest of my body.

    • Posted

      I still have the hip pain which pred does not relieve. Hip replacement not considered because of my ulcer but a cane relieves pressure when walking.

    • Posted

      I have been doing research on this for more than 10 years, I am a patient research partner in an international PMR medical research group, I have been on 4 forums all directed at PMR/GCA and heavily involved in a charity.

      I don't know it all, wouldn't claim to, ever - but I do know that the range of experiences is so wide it covers EVERYTHING and no two people have had a similar journey. Neither before no rafter PMR or GCA developed.

    • Posted

      Hi EileenH

      Yes i know and you have given good advice on the forum. I'm not disputing no two patients journeys are the same, but research has also shown that certain life experiences can contribute to PMR. There are various experiences been given on the forum by 7 patients (a graph attached). It is only a small group of patients but graph reveals interesting findings. I just wonder what a larger group of patients experience would reveal. I have thought about how i ended up with PMR. I could only recall having had surgery 5 months before being diagnosed. I do strongly believe either the surgery itself or the stress of undergoing surgery is responsible. I guess we will never know for certain what kicked it off, but it is good to see there may be a correlation with PMR and what we experienced prior to PMR diagnosis.....just a little research/exercise....

    • Posted

      I would go along with that, Eileen. I know a number of people who lead very busy lives, have had surgery, viruses etc and don't have PMR. I know others with similar busy lives, seemingly healthy and have PMR. I think I have posted before that my GP asked me if I was stressed and I told him that it was the least stressful time in my life. I didn't have surgery before PMR and I sailed through surgery about 4 years prior. In fact, one of the nurses said she'd never seen anyone as fresh and bright. Everyone else had come back from theatre sleepy and out of it! I certainly would not consider it a factor. My life would be considered to have been very stressful from a young age. I also think like everything else in life it's all relative. I wonder when they will find the reason why some people get PMR and others don't. It is obviously partly age related though I know younger people succumb too.

    • Posted

      Hi Silver49

      It is well documented that PMR appears when 50 years and over although there are some in their forties. The people you know who have gone through surgery and other stressful situations may not have an ageing immune system and ageing tissues. Some individuals age quicker than others and their immune systems age along with them. Also, they may not have had an altered neorohormonal regulatory system said to contribute to PMR.

      As PMR is caused by the immune system going into overdrive and causing an inflammatory response, it seems highly unlikely that absolutely nothing caused the immune system to go haywire...something adverse must occur to cause the immune system to go into overdrive and cause PMR.....

    • Posted

      Hi Eileen, I think the idea of trying to work out the cause for the onset of PMR is to be applauded. I can only add from my experience that it could have been either stress from having a lot on my mind or damage to my left shoulder, maybe torn tissue due to some physical stress to that area.

    • Posted

      Hi brian75018

      Thank you brian75018.

      I think it's a good idea too just to give us some idea of how we have ended up with PMR.....👍

    • Posted

      things are much better regarding family.

      Am down from 60mg to 5mg prednisalone now, reducing over 9 months.

      Thanks Mary

    • Posted

      Hi val26097

      So pleased to hear things are much better as regards your family. You are doing sooo well with your tapering i do hope you can get down to zero pred without any problems. ..big hug, thoughts and wishes your way...😍👍

    • Posted

      Hi Harrie4

      I couldn't get on to the site Harrie4. Thanks anyway....👍

    • Posted

      Embedded in your reply: "My life would be considered to have been very stressful from a young age".

      I would say the same thing. The happiest years of my life were from the year I went to university until a few years after starting our family, so roughly from 17-30-something. By 35 I was spiralling into depression, induced by feeling like nothing more than a body slave to small children. I climbed out of that when I finally got gainful employment, as loads of volunteer work didn't cut it, when I was in my late 40s. But my childhood and teen years had for one reason or another, things changed, been difficult, including death of a parent before I was four. I was probably primed to get something like PMR, having a diagnosis of another possibly autoimmune disease when I was in my early 30s. Obviously about 16 years of being happy (and if anyone had asked me if I was stressed I'd have said no) wasn't enough to keep me healthy. Perhaps a happy childhood would have shielded me from the onset of auto immune disease. Who knows? But there seems to be a growing body of literature which claims that childhood trauma can lead to illness in later life, and perhaps it was going to be inevitable even if I didn't have that confluence of stressful events when I was in my early 60s?

      So maybe when we ask questions about possible triggers we should include previous trauma, psychological, emotional, physical, from early life, not just what seems to be the thing which flipped the switch, the straw which broke the camel's back, just before getting ill. We might have been carrying a huge burden all our lives up to that point and never been aware, because that was simply the way life is, all we'd known from our earliest days.

    • Posted

      Yes, but there is no way to avoid what life throws at us - hindsight is always 20/20.

    • Posted

      I'm sure it is - but noone should get so wrapped up in it that they forget to learn how to deal with where they are NOW.

      Every year or so someone posts something similar being absolutely convinced they can work out what causes PMR because the doctors don't care or do anything. They do and they do. All the work being done in the autoimmune field is relevant to all other a/i illnesses. And all I have been saying is that it is such a complex potential background it is like seeking a needle in 25 haystacks.

    • Posted

      Hi EileenH

      I don't think anyone is getting wrapped up in trying to figure out what may have contributed to their PMR. It was just a small exercise to see what patients may have been experienced prior to pred diagnosis and our small survey pointed to 'stress'.....i would doubt very much that patients would, for one minute, forget how to deal with the disease, far from it, it's far too 'stressful' for that to happen....

    • Posted

      Hi Harrie4 is this the site you were posting..if so really backs up our survey..image

    • Posted

      Fascinating discussion! Just to define a term or two. For me, 'stress' is exposure to experiences that hit the "flight or fight" level. That usually correlates with 'trauma' -- childhood or adult, especially when the stress is repeated and keeps the body in flight or fight mode over prolonged periods. That, in addition to a genetic predisposition and perhaps another combination of age, socio-economic, and day to day levels of diet and fitness, may combine to allow PMR symptoms to emerge. I think the take-home is that our past experiences can shape our current situation. But it works the other way too: we can mitigate our stress, face and productively process past trauma, and develop supportive habits and relationships to offset the negative impacts. Michdonn's advice to smile and stay active is a good place to start!

    • Posted

      Hi Harrie4

      Hear! Hear!...sooooo true! I thought the discussion was very enlightening👏

      Keep smiling😀😊

    • Posted

      Its a wonder more people don' t get pmr when you think about all the worlds tragedies.

      in my family none else got pmr: maternal grandmother was orphaned at age 4 and was raised by aunts who died by the time she was 16. She lived in 3 different countries by the time she came to the USA. She had only 2 YEARS OF PRIMARY SChOOL. TWO of her 4 children died. My great grandmother outlived 4 of her 8 children and was widowed when the youngest was 2.

      My paternal grandmother lost her dad at age 5 when her mom was 3 months pregnant. She came to the Us at age 13 joining an older sister. They worked as domestics SENDING MONEY BACK TO SLOVAKIA TO SUPPORT THEIR MOTHER.

      Now these relatives lived to old age - inTO THE EIGHTIES. THE OTHER DIED FROM SMOKING.

      Maybe if they lived a little longer PmR MIGHT HAVE HIT THEM. One was from ESToNIA; one from Slovakia ; the other from Poland- now BELARUS.

      I got the history of the greatgrandmother from the eldest living person in my Estonian line shes 92.

      Go figure.

    • Posted

      How wonderful to have all that family history. You will have inherited some wonderful genes even if you are not immune to PMR.

      The possible combinations and permutations that we inherit don't make simple answers very likely in PMR or anything else.

      I used to breed Great Danes and just working put what colour you'd get was the simple bit and that got tricky once you left fawns and brindles.

      Easier with plants. Take a cutting and you'll get a copy; save seed and it's immediately in the lap of the gods. And then there are sports which can just occur for no known reason and have produced winners. See what I mean about simple answers.

    • Posted

      Hi karenjaninaz

      Back in those days people put up with their aches and pains. I remember my mum complaining if all sorts of pain also my grandmother, elderly aunts and uncles just putting it down to old age. Perhaps they had PMR and just went through their latter years putting up with it...

    • Posted

      MARY,

      I personally, could not imagine just "putting up" with aches and pains of PMR. I couldn't even dress myself, bathe myself never mind routine housework. It wasn't a matter of not wanting but not being able.

      I remember waiting in front of the rheumatologist's office buildiyng, waiting for my husband to unbuckle my seatbelt- thinking " if this doc can't help me just shoot me."

      Years ago there was something called "rheumatism". Does anyone know whether that was the old name for PMR?

    • Posted

      Hi karenjaninaz

      Eileen says it was called 'senile rheumatic gout' in the 19th century. I imagine the people in my grandmothers day and great grandmothers day did probably have that kind of pain where they we immobilised but PMR was not given a name until 1966. Our mothers, grandmothers, great grandmothers were probably given opiates back then for their pain and many people died at an early age in our grandparents and great grandparents day..doubt much was known about autoimmune diseases way back then.....

    • Posted

      Of course not, but it is good to be aware. Part of "Know Thyself". How else can we truly recover?

    • Posted

      Some of the family stories from the last century are so interesting and it is so impressive how people react, how they somehow manage to carry on. Have you a written record of what happened to your relatives - it would be a treasure for future generations.

      But the result of stress doesn't have to be PMR. My father died at 64, he had lung cancer. A smoker. But a friend of his said he felt the reason he became ill and died wasn't because of the cigarettes, but because of the stress of what had happened to him as a young man. He escaped from Poland and completed medical training in Scotland. He fought with the Allies. He married my mother but they really only had a year or so together because of his situation, he having to return to the UK from Africa where they'd moved, by ship in those days. Finally they were settled down, I was there, nearly four years old, and she died of a a brain haemorrhage. I do not believe he ever really recovered from that. He didn't get PMR, but he died at the age many of us do get sick.

      People don't always get PMR, but there are rather a lot of other often worse illnesses out there which they do get, and were they made more vulnerable by the stresses they encountered earlier in life? At least PMR doesn't kill us.

      I think we have to learn from our illness. I don't know what lesson each of us will take away. Like our reaction to PMR and pred we are all different.

    • Posted

      My grandfather and an aunt on my maternal side both had what they called "rheumaticks" but which I would say displayed symptoms that would tick most of the PMR boxes. They could both have had some treatment because by then pred had been developed. Before the early 1950s there wasn't that option. In the early days of testing pred there were patients who were in wheelchairs who were given doses of pred - and they got up and walked. That was what encouraged the euphoria about this miracle drug - until the reality of side effects due to the high doses they used became apparent. But even so, there have been no real studies on good dosing or best practice for reducing the dose. Used properly and carefully there need not be severe side effects for the majority of patients - but as you and I know Karen, it gives us our life back.

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