Weight loss due to PMR?

[scottiemarg]

I was diagnosed with PMR last July following severe pain in my shoulders. After starting the steroids the pain went very quickly. I started to realise that I was losing weight fairly quickly and having started off at 8 stone 7 lbs I am now down to 7 stone 3 lbs. I feel fine otherwise and am eating normally and checking on the internet I see that one of the symptoms of PMR can be unexplained weight loss. I feel a bit reassured by this but may check with my doctor anyway. Has anyone else found that they have lost weight like this?.

[Hidden]

Hi scottiemarg , I have the other problem of keeping weight down whilst I have been on pred. I think most of us on pred have the same problem I have reduced intake of carbs, i.e. potatoes, bananas, cakes etc. a great deal and only manage to keep my weight down this way. I do take some supplements as well including the standard Calcium Vit D tablet.

If you are losing weight and not reduced your food intake, I would certainly ask a 'good doctor' for his/her opinion.

Pete

[SheffieldJane]

Prior to diagnosis when I was pretty ill the weight was dropping off. I felt nauseous with the pain and was sick a few times. I had little appetite. It took a while for the Prednisalone to get into my system sufficiently to check these symptoms. I was lucky in that I felt a relief of pain and subsequent lifting of spirits within 48 hours. Alas a few months on I have undeniable carb and sugar cravings, I've developed a rounded stomach and excess fat across my back and shoulders. My face is not exactly the typical moon face but it's fatter. If I could turn the clock back I wouldn't have given in to the comfort eating so readily and would have been more thoughtful in what I ate. Possibly your continued weight loss will correct itself too. Doctors always get anxious when we lose weight so make sure yours are aware of it and have run tests for anything else that might be present like cancer.

You are quite a slight person anyway so it might be normal for you. Just watch it when you find yourself lusting after the cakes.

[bowler]

I have been on steroids for 17 years, and when on higher doses I gained weight and had a moon face, awful. I once again reduced my steroids and I got down to 6mgs and I felt dreadful, and the fatigue was really bad, I also lost a stone in weight, which was very unusual, To cut a long story, I had an adrenal test done which came back saying my adrenals were "insufficient " and probably caused by long term use of Pred. I then went up to 7.5 mgs, and now feeling much better on that dose, but not great, and will probably never be able to come off them. I am now seeing an Endocronologist who has ordered another adrenal test which I had this Tues, to see how the adrenals are doing, I see him again in Aug.

As you have only been on Pred for a year I don't think it's your adrenals, but just thought I'd tell you what caused my weight loss.

[DorsetLady PMRGCAuk volunteer]

Hi,

As others have said it's more usual for weight loss to occur with PMR before treatment, and the opposite to happen once on Pred because in some the drug can make you more hungry, and seems to re-distribute weight around certain parts of body.

Suggest you discuss with doctor just in case there's more going on, and not down to PMR or Pred.

Please let us know outcome.

[scottiemarg]

Thank you all for your comments. It is a bit concerning seeing the weight gradually diminishing but I will just have to check with the doctor. If it is resolved I will post again to let you know what happens.

[1brian in reply to scottiemarg]

Hi Scottie, just to say that I had pmr for a few months before opting for steroids.I went from about 12.5 stone to 10.5 stone.Having been on steroids at a lowish level for about 4 or 5 months I anm now about 11 stone.I too have never felt ill or had a poor appetite!

[PMRpro Ambassador]

A few people do lose weight when on pred. The weight loss with PMR is usually when undiagnosed and because of the unmanaged inflammation and should stop once it is being combated by the pred. I think HeronNS is another "pred loser" - she will be along later when Canada wakes up!

[scottiemarg in reply to PMRpro]

I will be interested to hear what HeronNS says - it is a bit worrying that the weight loss mainly occurs when PMR is undiagnosed. Of course there may be other factors involved in my case due to digestion problems etc.but I was hoping the PMR would be the culprit! This weight loss only started in July last year and stabilised for a while and then started again in the Spring.

[PMRpro Ambassador in reply to scottiemarg]

I didn't lose any weight with unmanaged PMR - quite the opposite! Five years of pain and stiffness stopped me exercising properly and the weight went on. Didn't put any more on with prednisolone - it just redistributed! Put more on when I was on Medrol though - that was horrible. All gone now though

[Maisie1958]

Hello Scottiemarg

I did lose a few pounds in weight before starting on Pred for PMR two years ago as I was feeling so dreadful. When started on 40mg Pred(!) I lost over a stone and a half in the first six weeks as I was like the Duracell bunny, I wasn't as petite as you but not particularly large. Unfortunately it's all gone back on now- pretty much the same weight pre Pred but definitely have the spare tyre-was quite smug about my waistline before. I haven't exercised as I used to, got lazy with carb counting also.

Just saying I did experience quite rapid weight loss without actually trying but if you feel it's not quite right for you then do get checked out. I must admit I'd love weigh what I did in July 2015! Even though I'm down to 1/0.5mg Pred daily now.

All good wishes,

Irene

[scottiemarg]

Thanks Irene. I just thought I would come on here before I consult the doctor to see whether any one else had lost weight in this way. Thanks for your good wishes.

[Breconblue in reply to scottiemarg]

Hello, realise this was 3 yrs since you posted this but since I have lost 20 kg since coming off steroids I looked up PMR and weight loss to see if it was a symptom, it is! I came off because of Covid. Pain is manageable but weight loss and fatigue dreadful. Blood tests have always been normal so never really had a formal diagnosis. How are you now? Has the weight loss resolved?

[PMRpro Ambassador in reply to Breconblue]

Nothing would have persuaded me to stop pred because of Covid - quite rightly as it turns out as steroids are being used in management and poor adrenal function after stopping long term pred is also a major risk factor. The first thing they do on admission at the latest is double the pred dose as in the Sick Day Rules.

[HeronNS]

I lost weight pre-diagnosis. I must have been losing for a long time, however, as I complained that manufacturers were making clothes bigger! It was just before a meltdown in the doctor's waiting room, when I was told because my doctor had retired I wasn't a patient there anymore, that I had weighed myself and considered I was in the midst of a catastrophic weight loss. I did then, and still do, weigh nearly twenty pounds less than I had for most of my adult life. A little while ago I dropped to 100 pounds, from a stomach bug. Now I'm about 104. I was about 106 when diagnosed, that had been a rapid drop from about 110, and before that I hadn't weighed myself for years. I think the weight has stayed off because I was so worried about diabetes, my blood sugar went high very quickly after starting pred, and the potential for osteoporosis, that I gave up virtually all grains and started walking a lot.

[scottiemarg in reply to HeronNS]

I have always kept an eye on my weight as 10 years ago I had major surgery on my digestive system. Obviously I lost a considerable amount of weight then but I got up to (sorry I will have to do stones and lbs!) 8 stone 7 lbs and stayed there until last year when the weight started to fall off and I have become rather alarmed about it. Considering before I had the surgery I was approaching 11 stone and never less than 9 stone before that, this is pretty worrying! However, off to the doctor on Monday and see if I can make any sense of it!

[shella]

Before I was diagnosed with Vasculitis I went down from my usual 9 stone to below 7 .... with very bad stomach and nausea....they thought I had PMR and was treated with steroids.....when I was treated properly the weight went up to ten.....think I was glad to see myself getting fat and fit again I didnt care too much about being plump!

[scottiemarg]

I would be happy to go up to 10 stone too - I don't like the haggard look at all!

[shella]

once you are on the right meds you will put the weight on again...I personally don't mind the extra weight on the face it helps hide the wrinkles ... good luck .., keep us posted ....

[Hindags]

Let us know what you doctor tells you.

I lost weight on Pred like others here because I feared weight gain and diabetes so much that I cut out almost all grains and sugars. Also, for the first months on Pred I had digestive issues. I went from about 146 down to 121. When I cheat on the carbs and sugars I go up a few pounds but at 14 mg Pred, it seems that it comes off easily if I beck back on the wagon.

[bigg8]

HiScottiemarge i was diagnosed with pmg in January this year having first being treated for a frozen shoulder then spreading to my other shoulder.

I also noticed wight loss but seems to be stable now.

[Parijm]

My weight has gone down since PMR came. At first my face filled out - actually no bad thing as I looked rather haggard, but after a year or so my weight reduced from under 8 stone to 7 & a half stone or thereabouts. I did tell my Dr. My arm muscles also looked flaccid & still are. Like others I have a good diet but have, not deliberately, reduced bread intake preferring a fresh salad to a sandwich for lunch. I'm more aware of eating food that benefits my bones and may reduce inflammation. It goes without saying that I enjoy a glass or 2 or wine!

[scottiemarg]

I've never been so thin in my life and like you my arm muscles are rather flaccid. This is probably too much information but my poor little boobs have almost completely disappeared! However, I don't care really as long as there isn't a health complication. I do feel OK just tire easily but then I'm no spring chicken!

[Seabyrd]

I lost about 10lbs before the onset of PMR (about a month before) had no idea why and no pain at all...then I suddenly awoke in agony one day... sore shoulders and hips and couldn't get out of bed... got to the rheumy within 4 hrs and she started me on Prednisone... she knew exactly what I had...I gained the 10lbs back and 30 more in the next 18 months got GCA and was diagnosed with RA... I have since lost the 30 lbs which was a real struggle... so I'm back to where I was before this nightmare kicked in. Never did know why I lost the 10lbs... I just lost my appetite I thought for no reason !!

[scottiemarg in reply to Seabyrd]

I think what puzzles me is that my eating habits haven't changed - I'm eating as before. However, I will see what happens in the next few months and see the doctor anyway.

[Seabyrd in reply to scottiemarg]

I just wasn't very hungry when I lost the weight and then when I resumed my normal (for me) eating I started gaining like mad... so got very serious about what I ate and went on a very healthy diet and still gained like mad. I wasn't ever more hungry on prednisone than before... most people get very hungry on it... glad I didn't as I can't imagine how big I would have become.

[scottiemarg]

My husband struggles to keep his weight off and sticks to a Slimming Club diet which he manages quite well - it just seems so unfair that these things are so unbalanced, but never mind!

[Joan-E-D]

I lost 5 lbs in weight in the couple of months before I was diagnosed and wondered why, as I was eating normally. I guess it was the muscles being reduced. I gained it back on Pred. and am now much the same as I was before. I haven't dieted but eat everything in moderation as I always have, as I don't find myself craving for extra food. I'm on10mg Pred. now.

Hope you find out what's causing your weight loss and that its nothing to worry about.

[scottiemarg]

I do feel reassured by your reply. It didn't cross my mind that it could partly be due to the muscles reducing. I can suggest this to the doctor as well because I really don't want her to over-react. Many thanks.

[Ladybird25 in reply to scottiemarg]

Hi Scottiemarg

My weight dropped off initially when all my signs and symptoms were typical of what you read about the presentation of PMR. As others have said I also lost a lot of muscle mass, which has left me with floppy skin and the dreaded "bingo wings", but the chubby cheeks make up for that! I've always had a very thin face, so I'm still amused by the change in my appearance.... I'm lucky that the Pred hasn't caused an increased appetite and subsequent weight gain, but we' re all different with our side effects. My rheumy is concerned that I haven't gained huge amounts of weight, but I feel that it is stable, which is OK for me. Having said that, I am also anaemic, which I have always been told is due to anaemia of chronic disease, but my rheumy is referring me to a gastroenterologist with a view to endoscopy and colonoscopy....!! Help! Being a Stoma Nurse who picks up patients who have had perforations during colonoscopies, I'm not over the moon about it.

If your doctor decides to investigate your weight loss, it wouldn't be a bad thing as you wouldn't want something more serious to go undiagnosed....

[scottiemarg]

Thanks ClaireJG. I'm hoping to see the doctor on Monday. After doing some investigating, I now have a strong feeling that vasculitis is to blame for most of my symptoms but I will put this to her and see what she thinks.

[LizJaymal]

I experienced a weight loss and wondered if the attack had caused sudden muscle loss (weighs more than fat), I lost an instant 7lb and over first 3/4 months another 7lb, I was overweight. I am 10 months on and down to 5mg, I have crept back up 3 or 4lb's. I have changed my diet avoiding refined carbs, sugar and red meat all of which contribute to inflammation.

Your weight loss seems quite substantial, do you struggle to make muscle?

Did you change your diet? Some people say they have piled weight on, I don't know whether that is effects of prednisolone or diet or both, I haven't heard anything that would explain why some increase in weight and others lose weight. It would help to make sense of it if I knew more about diet differences. Have you changed your diet?

Best wishes

Liz Jaymal

[scottiemarg]

No I haven't changed my diet which is why it is a bit worrying that I am losing weight. I am hoping that it is an effect of the PMR and I'm seeing the doctor today and will let her know the answers I have had on here. When I mentioned this before she didn't seem to think that weight loss could be attributed to PMR but I hope she is wrong!

[PMRpro Ambassador in reply to scottiemarg]

The weight loss with PMR is generally while there is unmanaged inflammation and once you are on pred that would stop. However, some people lose weight on pred.

[scottiemarg]

I saw my doctor today who doesn't seem to think the weight loss should be blamed on PMR. Many years ago I had cancer and I think this is very much on her mind as I also have bowel problems which I personally don't think are caused by cancer. However, now that I am losing weight I have had to give in to her wish to refer me for further tests. At least I should find out one way or the other what the situation is!

Thank you all for your input to my query.

[Ladybird25 in reply to scottiemarg]

Hi Scottiemarg

I agree with PMRpro about weight loss occurring during unmanaged inflammation, as I always notice my weight dropping off whenever my inflammation levels are high.

Do let is know how you get on with your tests.

Good luck!

[scottiemarg]

Many thanks. Just waiting for an appointment now.

[Ygammyyet]

Yes. I’m losing weight with my PMR. It does frighten me

[PMRpro Ambassador in reply to Ygammyyet]

Are you now on pred? Is the weight loss excessive?

Weight loss is common in unmanaged PMR - it is the inflammation that does it. But once you are on pred it should slow - unless you are one of the relatively rare people for whom pred equals weight loss (it does happen).

[Constance13]

I lost 10 kilos after a few months on pred. I put on 4 kilos at the beginning of pred then gradually lost those, and I have been stable since, so don’t worry.

[Newtopmr]

I’ve recently been diagnosed by my gp but still waiting for specialist to confirm it. I think if it is pmr I’ve had it for at least a year. When I had Prednisolone two weeks ago I bloated straight away but then I came off it for a week and now back on though on a low dose. As soon as I came off I became quite skinny and I am now too even with the Prednisolone but it’s very low. I too want to get checked out as I have no idea why this is and I’ve also read everywhere that pmr can make you thin. I have taken Prednisolone in my life many tines due to asthma and nasal polyps and did notice that sometimes coming off them made me get thin again. Anyway I guess my comment hasn’t helped give you an answer but just to say I’m going through a similar thing and it’s scary. I’m going to get my dr to check my thyroid too as well as all the pmr and whatever checks he wants to do. Good luck! Let me know what the doc says and I’ll comment here once I get an answer too!

[PMRpro Ambassador in reply to Newtopmr]

No, afraid not - PMR won't make you thin. In some cases people may lose some weight before diagnosis because of the unmanaged inflammatory state in the body. However - I gained weight after PMR started because I was unable to exercise as I usually did.

[Constance13]

I lost 10 kilos after I had been on pred for about 6 months (never before diagnosis as others have said).

It does happen - to the lucky few (in my case). Normal weight before PMR was 70 kilos, now I’m 60 - I’m 165cm tall. So, I’m not grumbling!!

However, if you were very slim before it could mean you feel “odd” if you lose too much weight.

Chocolate, ice-cream, milk shakes (with fresh fruit) could help.

[Bling123]

yes i lost weight at first, then settled down when started on steroids .