Recently diagnosed taking 15mg predisilone per day. .I have followed dietary advice found on the forum for around 1 week.Over the past 3 weeks I have lost 10 lbs. Is this normal PMR symptom? Diet? or perhaps both
Weight loss: Recently diagnosed taking 15mg... - PMRGCAuk
Weight loss
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Shires123
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If you mean you have cut carbs - some people lose weight pretty quickly once they cut carbs. Some people lose weight when on pred - it isn't common but it happens. HeronNS found that and cutting carbs made it worse.
Has the pred really improved the PMR symptoms dramatically to give some confirmation that it is the PMR we talk about here. PMR is the name given to the set of symptoms we experience - and they can have other causes, including cancer, so any marked weight loss should really be checked out, just in case.
Yes since taking the pred the pain has virtually gone. I am being monitored by GP see him Tuesday. Will mention it to him. I have cut down on carbs perhaps that's it. May have to include a little . I feel a slice of toast coming my way
How long have you had the PMR symptoms? Piece of toast an butter always goes down well ...
Started in January. Physio suggested PMG followed by blood tests as confirmation
So the weight loss is since pred?
Started losing a little before pred. In such pain I didn't want to eat. I will have to rethink diet. Not nearly as active as I was. I intend to increase my activity . Suffering from insomnia not helping energy levels. Having said all that waking up and getting out of bedwithout that awful pain is fantastic
Yes - I remember that feeling! Just be careful increasing your activity level. Do it VERY slowly, start with a few minutes and assess the next day. If you are OK you can do a minute or two more the next day - and I really do mean that sort of amount! Too much all at once could send you back to the beginning. And the rest days are as important as the exercise ones at first!
I lost a bit of weight before I was diagnosed with PMR (~5 lbs) and then once on Pred (starting at 40 mg), I lost another 15 lbs, which wasn't good for me as I was already on the thin side (was down to ~ the weight I was as a skinny teenager). During that time, I also had stress in my life (husband's health), so that definitely contributed to the weight loss.
I too had lost a few pounds (not intentionally) prior to being diagnosed with PMR 4 years ago. Since then I have to say I haven’t put on an ounce. It’s frustrating tbh as I’m way too skinny despite eating anything.
I do exercise as much as I can, but I’d love to have the curves I used to have.
The GP did look into things for me. I had an endoscopy, which was fine, apart from being extremely traumatic for me. And I have no other symptoms so I feel ok the way I currently am.
I’ll just see how things go as I’m now down to 3mg of Pred.
Mention it to your doctor. You maybe one of the rare people who do lose weight. I wish I was one, I did whilst undiagnosed.
I wish I was! Definitely putting on weight and I’m so hungry all the time! Trying to snack on veggies but somehow they’re not as satisfying as sweet carbs…
I think we can get into trouble with sugar cravings. I have been craving sharp lemon drinks, like PLJ and cans of Dr Funk ( no nasties). Very sour at first but it changes your taste buds and makes sugar taste horrible. Worth a try?
Anything’s worth a try! The annoying thing is that in 2020 I did the Fast800 plan for 12 weeks, lost lots of weight and completely lost my sweet tooth but sadly it’s now come back to haunt me….
Good luck! It is pretty hard. Congrats on the Fast 800.” If at first you don’t succeed, try ,try again”
Scottish quote. Robert The Bruce I think
You’re right, this is what I’ve got to do!
I lost weight when on prednisolone as I also cut my carbs and when diagnosed with steroid induced diabetes I cut carbs even more and lost over 3 stones
wow! Well done for turning lemons into lemonade Koalajane.
What are you eating daily?
My usual breakfast is 1 slice of sourdough or low carb bread with peanut butter and a green tea. Nothing then until evening meal about 6.30 which is a salad, lettuce, salad onions, tomatoes, avocado a handful of nuts with something like cheese, cold meat, eggs, salmon or prawns followed by full fat Greek style yogurt with blueberries. Other than that I may have a stir fry, an omelette, cauliflower or broccoli cheese.
Tbh I'd lost a lot of weight before diagnosis, which is why I suddenly got so frightened and determined to get a doctor. But as PMRpro pointed out, I did lose more weight early days with pred. Moreover my dear hubby shared a stomach bug with me during that time and the weight I lost in 24 hours then was no joke and tbh I don't think I've ever regained all of that! Weight dipped below 100 lb after I moved and when having knee problems and working my way up into a PMR flare, and nowdays it's probably not even back to 105. Before all this most of my adult life, post childbearing, I'd been just above 120. Since stopping pred I feel hungrier, which is the opposite of what's supposed to happen, isn't it?
Yes, I lost weight (4kg) pre diagnosis when symptoms were accumulating over a period of months, and then another 8 kg when I had shingles. I ate low carb even before PMR so that had nothing to do with it, although I think that my appetite was down on both occasions. The weight has never gone back on.
Hi, I have also lost a LOT of weight ( approx 2st) since being diagnosed with PMR in April 22. I have had endoscopy and several scans and numerous faecal tests - and all came back OK. I became pre diabetic and cut down on carbs but that was after I'd lost the weight. Couldn't afford to lose anymore weight so try not to worry about the carbs unduly. It would seem perhaps that PMR/Pred affects a few of us this way maybe.
I can identify with this. I wasn't over weight before PMR but steadily lost weight after diagnosis due, in part, to cutting down on carbs, no sugar, etc. I felt so much better and pred gave me extra energy so I became more active and I lost more weight. I now take a reasonable amount of carbs each day but I'm still off the sugar and processed foods. Years ago, I visited a nutritionist because I was having bad headaches each afternoon. She gave me a diet plan very similar to Keto. I lost a lot of weight, but felt very well. However, friends said I looked 'awful' and I gave up the eating plan when I developed vision problems that went away when I started eating normally again. My weight also returned to normal. Folks can be affected differently by change of diet, medication etc. All the best to you.....
as an overweight lady .I'm sorry to say I have added 2lb guess for 9 weeks on meds ain't too bad. I'm trying cut cards and sugars . but have very sweet tooth ! but agree with peeps on here Get ot checked out.
sudden weight loss is always worth checking with your doc...sending you best wishes on your pmr adventure
I’ve heard that some people lose weight on prednisone but I think it’s more common to gain weight. I’ve gained a little over 10 pounds in 15 months
I’m also recently diagnosed and on 15mg daily if predisilone for last 3 weeks. Some weight loss but generally feel great. Where can I find the dietary advice as could do with losing some weight! Take care x
Loads of posts - but it is very simple: cut carbs drastically, especially processed foods and added sugar. I find this website excellent - simple explanations, pictures make it easy to remember what is good and less good, has some recipes with sensible ingredients and you don't HAVE to pay for anything unless you want to:
Thank you. I’m vegetarian and follow a sensible diet as much as possible and will definitely look at your suggestion. X
Unfortunately a sensible or healthy diet doesn't always cut it when you are on pred - fruit for example can be a minefield when it comes to carbs and weight gain when on pred. Or wholegrains - still carbs and every bit counts.
That’s a pity, I was thinking I could substitute fruit for the sweet things I’m so tempted by - also I’ve recently incorporated lots more pulses and lentils into my diet in an effort to introduce more diversity into my gut microbiome….what a minefield. I guess I’ll just have to try things, record everything (I do that anyway) and see what happens.
Berries are fine - and just look at the pictures for the less carby options. Nothing is forbidden but I had to get down IRO 20g carbs a day to lose weight back then - one banana took me over that without anything else the rest of the day!!!
I lost weight when I shifted to an anti inflammatory diet and cut down on the ‘cervezas’! I think whenever you adjust your diet to a healthier diet you get the immediate result and then it tends to plateau out. If you continue to drop weight heavily then it’s GP time for sure
What are cervezas? Trouble is I think I’m already on a healthy diet and it feels as if I’ve got to drop some of the healthier bits of it!
It's beer I think ,,,
Oh well that’s good, my poison’s vodka…
No carbs in spirits ...
👍🏻👍🏻
Just the mixers ...
Yes, I’m trying to find something other than caffeine-free Diet Coke as I’m sure it has a similar effect on BG but no luck so far…good job I don’t drink much..
A strange effect with artificial sweetners is that the over-sweetness they create fools the body into thinking there is a massive injection of sugar coming so lots of INSULIN is secreted but I don't see why they would increase BG. Unless they coincide with the pred triggering release of BG from body stores.
Ah right that’s interesting. I read that Pred triggers the release of BG between 4 to 8 hours after dose (as I take at 7am and 4pm that gives me an hour between 3 and 4pm or after midnight!) - is this correct?
I think that was about what Koalajane found but I think it depends on the person. A guy on another forum who was diabetic did a whole study on himself. He found if he exercised immediately after eating it would abort the spikes or at least lower them.
Do you NEED to split the dose? Why/when did you start?
Yes there’s a number of things you can do to reduce/lower spikes, exercise, eat a veggie starter before carbs, or a tablespoon of vinegar (in water or salad dressing ) apparently all can reduce a spike by about 30% on average , depending on individual variability. Re my split dose I’m one of those it doesn’t last 24 hours so was advised to split after a week on 20mgs. Which works amazingly for the pain by the way.
What we suggest is about 2/3 in the morning - and the rest late enough to stretch the effect to 24 hours which may be as early as lunchtime. Just wondered if that might give you a wider window?
Yes I think we’ve had this discussion before, when I was c/o very poor sleep. I’ve moved my pm dose back to between 3-4pm and my sleep has improved to be manageable so I would be reluctant to alter things more in case it upsets the apple cart! Anyway if we’re still talking about me having my vodka and diet coke from time to time, I don’t think I want it enough to wake up at 2am and take my pred - then spend the next two or three hours awake…but I’ve taken all your excellent advice on board for when I feel ready to risk change….I am gradually creeping backwards re dose time but as I’m tapering as well I’m very cautious about introducing other changes. But I can’t thank you enough for all the time and support you give so unstintingly 💐
Cerveza = Beer… regrettably vodka isn’t any better as alcohol is a known inflammatory agent in the body. But… in ‘moderation’ I guess it’s ok? Don’t know!
Plus, I’d check with your doctor but mine recommended little or preferably no alcohol intake with steroids
That's most of us damned then!
It helps to make informed choices…
Most doctors don't forbid alcohol - it is discussed often here.
Mine didn’t forbid - but said in excess alcohol can counter the steroids effect and in itself is an inflammatory agent.
Mine didn’t mention alcohol…but I don’t drink much 🙂
hi - could you let me know the forum where you obtained dietary advice?
Take care
An excellent site for low carb advice and ideas is this one
I was diagnosed with PMR four years ago, still on pred, currently on 18mg/d. Gained a lot of weight since then, but most concerning was my terrible breathlessness. A simple walk to the mailbox had me huffing and puffing! Doctor prescribed pulmonary function test; no problems. Then cardiac stress test; no concerns. Doc suggested I lose weight. Went on modified keto plan with limited carbs (max. 75g net carbs), no added sugar, minimal sodium, and lower caloric intake. Since Christmas have lost 31 pounds, no longer diabetic, normal BP, no more GERD, and several other heath improvements. Maybe I’m the exception, but I am amazed how diet and nutrition can change a person’s life. (By the way, I use a food tracker, Cronometer, to help me monitor my eating.)
I was slowly increasing the dose I needed to function and was also at 18mg/day after over 12 years pred, 17 years PMR. I have atrial fibrillation which had been OK until the bivalent Covid jab which sent it into orbit - I was struggling to walk into the village up the slight hill (for here that is, I live in the mountains!). Since being put on tocilizumab/Actemra I have lost about 8lbs but it was having an ablation for a/f that made the hill possible and my feet are back to slim and normal again. I need to concentrate on diet again, maybe I could lose a load more.
And yes - you aren't an exception but not enough believe how much difference a good diet makes to us.
This gives me hope! I’m worried about developing diabetes - I have a glucometer from a while back and have taken a couple of readings. - very alarming, I’m seeing the practice nurse on Tuesday for bloods and am going to ask her to add in an Hba1c, last had one 3 months ago just at the start of symptoms, so should show up any increase. The sticks I had were out of date so I’m hoping it’s an aberration!
It is incredible how much difference it can make, I just felt so much healthier and more energetic when I lost a couple of stones a few years ago. That’s amazing, 31 pounds since Christmas!
I lost weight on pred, never got it back. Now I have muscle wasting added to that. I don’t think I will ever gain again, I seem to be at my set point weight despite all efforts to put it back on.
Wow, that muscle wasting sounds rough. Hope you can find a solution, if there is one.
You are not alone. I lost about a stone, half before and half after starting with Pred. . I’ve had a few bumps along the way but after about 2.5 years I’m still the same weight as after the loss. XX
I lost weight quite rapidly in the 4 months before my PMR was diagnosed, but it stabilized after I started taking Prednisone and I was already on a low carb diet to manage prediabetes. My muscles were wasting before I started Prednisone as I was in too much pain. to get much activity. slowly coming back now that I am more active due to pain being managed.
have you changed your diet alot? Gone from eating alot of junk to under 30g of carbs a day or something? If so, the weightloss would be reasonable. You probably lost most of it add water in the first week. If you haven’t been trying much, I’d keep an eye on it for the next two weeks and go from there.
Due to my loss of weight, lack of appetite and !methotrexate side effects my go has had prescribed ensure drinks,
When I was diagnosed with PMR nearly 4 years ago I was also about 20kg overweight and I went on a 20gm carbs "keto" diet (based on information on the dietdoctor website recommended by others). After 2 years I'd lost 18kg. My blood sugar levels were really healthy and I'd got down to 7mg of pred. I felt pretty good.
But then GCA also came calling and I was on IV pred for 3 days, then the usual really high doses for quite a while. Relief from the GCA symptoms was wonderful, but the weight came back on with a vengeance (18kg) and my Hb1Ac went up to insulin resistant levels, even though I was eating EXACTLY the same diet that had previous had me steadily losing weight and maintaining healthy blood sugar levels. And I felt lousy a lot of the time, still do. Most disappointing would be an understatement.
My theory is that those massive doses of pred somehow "damaged" my blood sugar metabolism, as even though I'm down to 5mg now, the weight is still not budging, although it has now stopped increasing and my Hb1Ac continues to be in the insulin resistant range. So perhaps the "damage" is slowly getting repaired? Who knows… I use MyNetDiary to track my carbs etc, so I know I'm still on track at 20gm of carbs per day and an appropriate total calorie intake. Perhaps a keto diet no longer works for me? Has anyone else experienced this?
You are unlikely to get many responses here as few will see your question unless they saved the thread as DL and I do. Post it as a new thread if you really want to hear from others.
Thanks for the suggestion, but I won't bother. It was just added more in the way of including an alternative viewpoint to this post, but was a bit off tangent I now realise. My apologies.
No need to apologise -
No apology needed - and it is a valid viewpoint and question. Just the way HU works it won't be seen so won't get discussed here which would be a shame.
Hi everyone, these replies to the post about weight loss are reassuring. I've been worrying about how much weight I've lost since I was diagnosed with PMR last June - at least a stone with some muscle wastage. Arms like sticks!! Very depressing because bloods show I'm also in the diabetic range so I cut down on carbs and cut out all sweet stuff. I just feel thin, though my weight does seem to have stabilised now. Advice about taking steroids and dealing with diabetes is directed at people struggling with weight gain. And that's what fuels the big worry about weight loss. You wonder if it's something else. I'm seeing my GP this week and will talk to her about my fears but the information on here is very helpful. I am obviously not alone. Thank you.
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