My first PMR symptoms, (which were severe and immediately diagnosed and addressed by 15 mg Prednisolone) occurred 7 and half years ago. Prior to that I had suffered inexplicable significant weight loss over 12 months ( from 12.5 to 11.5 stones-I’m 6’1”) My diet hadn’t changed and I suffered no other effects. My GP thought it was caused by PMR even though I had no stiffness or other symptoms. Contrary to most people’s experience I didn’t gain much weight while on steroids, although I was more prone to hypoglycaemia which I kept at bay with muesli bars -I did/do exercise a lot.
Can anyone cast any light on this ? I do believe weight loss is a symptom of PMR but It doesn’t seem to have been reported by anyone else.
PS After 6 years my steroids were discontinued with no symptoms even after 18 months. My weight still remains about 12 stones though
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Cycleman
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I lost weight during the months I went undiagnosed with PMR, but I also gained weight quickly on Pred and had been diagnosed as borderline type 2 diabetes. All documented side effects of PMR and then it’s drug Prednisalone. Maybe the weight loss was just the one symptom we didn’t mind, mind you it made me think I’d got cancer.
I would request some bloods to be taken in light of this. We have an instinct about ourselves that needs to be listened to.
Thanks, my instinct was that I was fine except my friends commented that I was looking rather gaunt. That was 7 years ago and have had loads of blood tests,Mainly checking for inflammatory markers.
My PMR was diagnosed pretty quickly so no time to lose any weight. I soon piled it on due to the pred mind and I'm still struggling to shift the weight even at just 2.5mg per day. Perhaps if I had lost some weight in the first place the pred would have just taken me back to my normal?
Weight loss is listed as a side of PMR - but not everyone gets all the symptoms -nor does everybody gain weight on Pred..
Pain or discomfort usually begins on one side of the body before affecting the other side as well. Additional symptoms of polymyalgia rheumatica may include muscle tenderness and weakness, low-grade fever, loss of appetite, weight loss, fatigue, a general feeling of ill health (malaise), and/or depression.
As we often say - your PMR is your PMR - not anybody else’s…
I lost a fair amount of weight prior to GCA diagnosis in feb 22 - from 72 kg to 57kg approx. I was put on the cancer pathway for every check going. Nothing sinister found. This is a symptom my rheumatologist ignores when she says ‘the headaches might be something else’ but then she also believes GCA lasts 10 months on average! What can I say, I must be a faker hooked on steroids 🤣
Keeping the weight off (60kg now) and following the advice on this fantastic forum😊
Before I was diagnosed with PMR (symptoms began early January 2021), I lost ~5 lbs. I was not trying to lose weight and I’m fairly thin to begin with. Once I went on Prednisone (late May 2021, starting at 40 mg), I lost another 15 lbs, so a total of 20 lbs. I was under a lot of stress, so that would have contributed to the weight loss. Since then, I have gained 10 lbs back and that seems to be where my body wants to be.
I lost 6lb with PMR, then stayed stable for a year, lost another 6lb with GCA. But then on high doses of pred I put back on 10lb in a few weeks, despite having lowered the carb intake. A bit of a disappointment because I had felt that the weight loss was the silver lining to PMR! So I reduced the carb intake again, then very slowly lost the weight again. Two years later I had stabilised at about 16lb net loss. However, lately I've noticed a slight and surprising increase since reducing Omeprazole. So restricting the carbs again!
I lost ten percent of body weight in first three months after PMR dx., only up ten percent of total loss after three years. Doc stopped pred after 2 years, even though multiple pain areas still making misery at various times. In the US the medical folks conclusion is PMR lasts 2 years so no pred after 24 months.Not being uncaring, just state of the science here at this time and wanting to avoid causing pred side effects . Also in US drug cos do not push docs to prescribe pred, since it's generic and not a profit maker.
Living w/ PMR is an assortment of adjustments, some much more demanding than others, having been a very active gentleman farmer and enjoying rough work it is a much missed activity, but confronting the medical establishment and risking good long term relationships in order to get viable trtmnt is a bigger adjustment. Fatigue, mornings as the tin man in a downpour , multiple naps daily, was type A all nite astronomist before PMR. So the 70s and beyond don't look like what I had envisioned, but again, it's adjusting and hoping for med advancements.
I’m in u.s., never met a doctor who says he’s had a case over 1 year. They don’t know what to do with me but they do prescribe the needed Pred. I’ve lost so much weight (muscle mass) on pred, don’t know whether I will ever get it back.
Hi, I've lost over 2 stones since April 2022 when I was diagnosed. Apparently some people do, and steroids haven't made me put the weight back on. I'm also pre diabetic but can't worry too much about the carbs else I'll lose even more weight! Vicious circle!
I have not gained weight but that is attributed to less appetite related to stomach pain and later, colon issues. Those issues have ended. Recently, I'm losing weight because some traumatic events happened, causing appetite loss. Early on, I was under the impression that I would gain weight -- that seems to be a widely reported symptom for Prednisone. Only after doing some digging, I did find mention of weight loss. No explanation was given for weight loss.
Hi Cycleman. I also had unexplained loss of weight of about 1 stone ( here in US 15 pounds) in 2018. Doctor could not find out why. PMR pain began 1 1/2 years later. Perhaps that was my first symptom Now after 3+ years of diagnosed PMR and down to 3 mg prednisone I am still down in weight, looking a bit gaunt too. How great that your doctor thought it was PMR so early on. Glad you are off steroids and symptom free! A hope for everyone with PMR!!!
I too lost a lot of weight just prior to GCA/ PMR, over a stone and half, my weight went down to 45kg, I was 54kg before . I did go to my doctor about the huge weight loss and as someone else said was put on the 2 week pathway for suspected cancer, I had every test going but it was all clear. I’m still very underweight even though I’m only taking half a mg pred a day, nothing I eat is making a difference, my doctors and dietician have put me on build up food but it still remains at 45kg, I’ve never been able to eat so much in all my life as I do now.
My first symptom was weight loss which a neighbour commented on before I had realised this. I too had lost about a stone in weight. I had no other symptoms at the time and was only diagnosed (by myself), after more painful symptoms appeared followed by blood tests and conversation with a friend who had PMR. I have not put on any weight during treatment either. Now, 3 years later I have a diagnosis of osteoporosis but am down to 1mg of pred. Hoping to be completely off pred in a couple of months.
I too lost some weight prior to eventual PMR diagnosis. After nearly 4 years on Pred (now off for nearly 6months), my weight has remained stable at c.59 kgs throughout.
I lost over a stone with PMR even whilst on prednisolone..my rheumatologist told me it can be symptom of PMR. I am now down to .5mg of prednisolone every other day
I lost a stone in a matter of weeks having become ill overnight in August 2022 and was originally checked for sepsis/cancer. For want of a better diagnosis after blood tests and scans it was thought I had PMR but do not fit the typical symptoms, however they have confirmed that I definitely have an autoimmune disorder. The weight has stayed off even though on 10mg Prednisolone.
Yes, I lost half a stone over Christmas last year, this was before diagnosis. I think it was even before the PMR pain came on. I just lost my appetite. It turned into GCA for me.
PMR. My gp was so concerned that she sent me for a number of tests to check for possible cancer. I regained weight and a bit more after I started on prednisone. Best wishes
A fairly large proportion of patients diagnosed with "just" PMR actually have LVV - the piggy in the middle between PMR and cranial GCA and possibly GCA affecting the larger arteries but often missed as it is rather difficult to definitively identify - biopsying major arteries is a rather major procedure! However - LVV would parallel GCA in resulting in the weight loss that is common in GCA and probably due to the inflammatory process.
mine was weight loss and pain. Loss 3 stone over a year never put any back on that was 5 years now. But happily maintaining unless I get a flare then it drops dramatically still under weight now. But thankfully down to 4 mg a day. 🤞 so far so good. Glad you are clear.
My normal weight before GCA and PMR was 11st2-5lbs. My weight now is 11st10-13lbs. That's a gain of 8lbs. I'm 5'9" (5'5.5" now due to back curve/compression). I've lost about 50% muscle mass now distributed as fat in typical Cushing syndrome fashion. As muscle mass is heavier than fat I reckon that without the fat I would probably weigh nearer 10st2lbs. So, whilst I don't appear to be much overweight in reality I'm probably 1st8lbs overweight. I'm on 7.5mg pred. so can't hope to correct this until on very low or no pred. I am watchful of diet but can't seem to lose the fat by gaining muscle. Probably doesn't help your situation but as a cyclist thought you'd appreciate another perspective.
I lost about 10lbs in weight before I had definite symptoms of PMR. Unfortunately I’ve put on about a stone since I’ve been on Prednisone . The weight is distributed in places I don’t usually put it on ( underneath my jaw line, my back) as well as the usual places ( around my middle, thighs, my bottom).
Yep lost nearly a stone after onset of PMR. Two and a half years later gained most back with a determined effort but still struggle with eating enough to keep it on ....
Hi, during my journey with PMR and Pred I was the top end of 11 Stone but through slow tapering and better eating habits and being able to work on walking further with my dogs, my main exercise, and a new Osteoporosis drug I am now 9 stone 11, on half mg of pred. Still can't seem to shake of the midriff weight though but at least I haven't got the moon face and I have a jaw line again. My GP was worried about the quick weight loss but it has slowed down now and seems to be stable, he did say it could be due to the low dose of Prednisolone.
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