I have just been diagnosed with PMR and I’m on 20mg of prednisolone, I have been on the steroids for 10 days now and yes they are working, but I have noticed I’m eating so much more, I’m always hungry, as I was feeling more mobile I thought I would try and start eating healthy, I have lost weight on Slimming World before and decided I would try it, weighed in this morning and I have gained 7lbs!!!!!!!
Having researched prednisolone it’s one of the draw backs of taking it, and it does say a low salt diet helps as well, I was just wondering if I followed Slimming World Could I lose weight? If I’m going to be on the meds for a few months I will end up twice my size!!!
I have to go and see my consultant again on Monday so I will discuss my concerns with him.
Would welcome any advice.
Paula
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24paula
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Hi and thanks for all the advice, I think I need to do some reading up on this, I did find out the basics of it but it looks like there is a lot more to learn, I’m just glad I posted on here when I did, seems to be plenty of help!
Can I ask do you or does anyone suffer with tiredness and fatigue I mean really bad, I can just manage to go shops but when I get back I’m so done in and tired, as soon as I sit down I fall asleep it’s been like this for months, my consultant did say it’s all to do with PRM but just wondered if anyone else was suffering, I knit and sew a lot especially at night and I have not been able to cos of the pain, but since being on the meds it’s got easier and last night I did some knitting, I rest my arm on a cushion and it was not to bad but I could feel the aches coming so I gave up, I hope it’s not always going to be like this, I feel very down at the moment, seems since I lost my husband Jan 2020 I have been in and out of hospital more times than ever in my whole life and I’m 70!!! I think it was all waiting until my hubby had passed away so I could look after him myself which I did till the end, it was such hard work, then things just went down hill, I now have to re look at my eating which is a job on its own, the future does not look good when your landed with all this, but I will sort myself out and get through it, it’s just nice to know there are so many people who have the same condition, (that’s said in the nicest) way, I would not wish this on anyone.
Thanks for all your help and everyone who has given advice, it’s just nice to know your not on your own.
Most of us! It is an inherent part of almost all autoimmune disorders and there is no magic pill for it, it must be managed by pacing and resting. In the early days of pred while you are at higher doses you may find that the pred boost outweighs the PMR fatigue (can't say I ever have though) but it is a false friend, encouraging you think you have wings and can do everythingbut then you overdo it and it can take a long time to recover - weeks sometimes. It is much like the fatigue in ME/CFS and as they have now realised - exercise ISN'T the way to deal with it,
PMRpro has given a good link re fatigue -and most do suffer from it -in varying degrees. Anyone with a chronic illness is prone to and PMR is particularly difficult. Have to say mine wasn’t too bad, but I had GCA only and that does affect a bit differently. Despite a dodgy start, luckily it was relatively easy to cope with.
Both PMRpro and myself - and others - know what it’s like to care for a loved during during these illnesses -and yes sometimes they seem to be “holding back” when you are dealing with the full on day to day scenario and then following bereavement they come flooding back. It’s not easy, we know that.
You will get through it, but please don’t struggle on your own -there’s always someone around to “listen”
I should have added - I know exactly where you are coming from. My husband fell and had a spinal fracture in Jan 2020 and was then dependent on me until he died in October 2021. I was "fine" all the way through, the first couple of months after his death seemed OK too but the last 3 or 4 months have been hard and it has also been one thing after another - no hospital inpatient episodes but sometimes I've thought one would be acceptable if only to not have to feed myself! If you want to vent - feel free to PM me.
I used to knit a lot but when PMR first appeared 18 years ago it got harder and harder - my arms ached whatever I did so I abandoned it as just not worth it. It didn't really matter - no-one to knit for any more! Even reading had its moments - but resting the book on a cushion helped that a lot
Hi yes it’s funny how we can keep going for others, but we have to! Had a very hard day today my mind most of the time was on food, I need to get my head around what to eat, I have always lost weight on Slimming world or calories, now it’s something I know nothing about, I work from home I run our business I do all the accounting side although i am retired, have been now for about 6 years, my eldest son runs the business, but it’s hard work, all I want is time for me but it’s just not happening at the moment and not being well just adds to it, I worked till about 3.00pm today I needed to get some paperwork sorted, but I was so tired I went and sat down with a cuppa and I could have gone sleep, I just had crisp bread and some cheese for my dinner, had no energy to stand and cook.
I did a bit more knitting tonight it was good even though I was not really in the mood, think I was over tired.
Think I must get to sleep now, it’s been nice chatting to you.
My "get out" when I can't cope with cooking is to stick a tray of stuff in the oven - no standing and fiddling about except cutting enough bits of veg but if totally desperate, it is salad instead, mixed leaves and cucumber/tomato. It is also possible to do meat - the other night I had a base of asparagus and cauli/brocolli florets and a couple of small lamb chops, oil and herbs and half an hour in a oven at 185C and it was perfect (I like pink lamb). There are several good traybake cookbooks to be found now - including low carb ones! It is a perfect technique for one person who can't face standing and doing more fancy stuff - exactly the amount you want, no waste.
Sorry to hear about your husband. I'm sure PMR waited for me to stop looking after a friend with dementia . 2 years of severe stress. Regarding knitting, I find my arms ache, but I'm better with circular needles as I don't have all the weight of the work to support. I've just had an order from my niece for a shawl in 4 ply, but the baby isn't due until November so I can take it slowly. Hope things improve for you soon.
Funny how things turn out with our life’s, I can’t use circular needles I have tried but just cannot get on with them, I do rest my arm on a cushion while I knit and I found that o.k, but at the moment as long as I’m not knitting to long it seems to be o.k, so good to knit without pain. Well you have a task with your shawl but take it easy do a little at a time your get there.
I'm in so much pain my middle upper ba c k feels like there is a big knife in there. The pain continues up and All of right shoulder so painful can barely us arm at all pain contues all the way to my fingertips. My right hands keeps tremoli f from the intense pain . I have to still in bed. I'm very sick. I went to hospital they sent me to Orthopedics. I'm waiting 4 days now for insurance to get mri scans of shoulder. Neck and back. So much pain. So sick. I need help real soon
That's not typical of PMR - it tends to be more general. Myofascial pain synrome and bursitis aremore common alongside PMR and can be part of it - and they could cause such symptoms.
Yes its a known side-effect, partly because it increases your appetite and partly because it causes blood sugar highs and corresponding lows when your body tries to correct it. A ‘normal’ healthy diet doesn’t help usually and simply counting calories didn’t help me; it was what I put into my mouth that mattered. So, the Pred forces your liver to randomly release stores of glucagon that are turned into glucose, giving you a high blood sugar. This is before you even put anything into your mouth. Your body hates high blood sugar so it pumps out insulin to get it out of the blood and into cells as stores of fat. This flood of insulin makes your blood sugar drop and you feel even more ravenous and perhaps shakey as well. The tried and tested approach to Pred is cutting out as much carb as it takes for your weight to remain stable. For me and others that meant cutting out (not down) potato, pasta, rice, anything made with flours, sugar and maize. Watch fruit (berries are best) and moderate root veg. Have a good amount of fats, mostly veg based, and protein. I started on 60mg of Pred and my blood sugars were stabilised on average and my weight was stable. Some people need a bit of carb so you have to see for yourself. Another thing is cut down on salt, even hidden salt because Pred makes you hold on to sodium which then causes fluid retention. On high doses, if I had even
a bit of sauce it went to my eyes. If you are doing all this and your face starts to go a bit oval, thats normal until your dose drops. This is because Pred makes you redistribute your fat to face, neck and around the middle.
Id say unless you really need peer face to face support, save your pennies and buy good protein and veg to stuff your face with, with abandon (mostly). Its not forever and you will thank yourself for it.
Low carb is the way to go when on pred. Just removing all processed carbs will take out loads of simple carbs, added sugar and added salt which are all poison when on pred. Limiting fruit is also important - healthy carbs maybe but carbs nevertheless.
Learn the principles and it can save you a fortune. By cutting the carbs you will smooth out the swings in blood sugar that are the underlying cause of the hunger pangs. It really does work.
When I started on steroids I could eat a five course meal and then another five course meal when I had finished the first. I was starving. I did give up gluten and simple carbs as I was told that would stop the moon face. I did become a nutrition nerd and bored everyone by telling exactly what vitamins and minerals were in our meals!
You sound just like me, it’s not normal hunger it’s like a addiction, I feel I just have to eat, I had my dinner at 6.00pm tonight, by 7.30pm I could have eaten a takeout, I had a packet of quavers, they did not do much but I was determined not to have anything else, do you think giving up gluten helps? I have read to give up salt as well, I don’t use salt much in cooking and I don’t add it to my dinner, but I know there are a lot of foods that contain a lot of salt, but it’s so time consuming reading labels all the while when out shopping.Well I am going to give it a go, I’m just hoping I can keep things from getting any worse, good luck!
I did not get a moon face so perhaps giving up gluten did help or it was just coincidence! I changed to small amounts of food over the day rather than larger meals three times a day. I went swimming which meant I could not eat! I tend to do my own cooking so I know what is in things. Most things I buy don't have labels which saves time. I do normally get food delivered so tend not to impulse buy. During lockdown a local company starting delivering fruit and veg, they are brilliant and cheap.
This is what I need to get used to doing cooking from scratch, it’s going to be a real challenge but it’s just getting into the habit of doing it, I just wish I felt less exhausted, but hopefully it may ease. I usually do a click and collect so I can’t change my mind when I pick the food up, and now I need to be more strict.
I have got quite adept at doing one pot meals and I also try and make the cooking less stressful. I tend to cook over a period o I can rest inbetween and then put it all together and warm it up in the microwave.
I was gluten free before diagnosis. It’s the carb, not the type of carb that’s the issue. It’s not easy, I do remember thinking about food all the time and was planning the next meal an hour after the last. I had soo many veggy stacks like crispy cooked broccoli with a little homemade French dressing. What I used to do was watch cookery competition programs while I ate (very slowly) which seemed to help me think I was eating other things as I chewed each small mouthful a 100 times. On high doses I wasn’t able to do much physically to distract myself or mentally so it wasn’t easy but I hung on to the fact that it wouldn’t be forever. Do it work, yes. Is it a breeze, Not to start with. By the way I did have a daily treat of two pieces of 85% chocolate and two small glasses of white wine a week. Usually by dessert was berries with a good helping of unsweetened full fat coconut yogurt.
That's why we recommend cutting processed foods - saves reading labels! By far the best approach is to cook from scratch using fresh foods as much as possible - then you know exactly what you are putting in your mouth.
Going gluten-free automatically avoids many processed foods - unless you make the mistake of haunting the Free-from aisle which is likely to lead to disaster as gluten-free baked goods are very carb and calorie dense so a big mistake when trying to go low carb. As Snazzy says - nothing to do with the sort of carb, gluten-containing or not, it is carbs that are the problem.
I didn't gain any weight. Partly because early blood moitoring showed my blood sugar was getting a bit too high. So I basically gave up all "white" carbs - you know, grains and sweets. I did not give up root vegetables, which are also carb heavy, and very occasionally I had a treat, like a fresh home baked scone. But they really were treats, not an everyday thing. I know people will say they wouldn't have so much willpower, but I had a lot of incentive to stick to this. I ate a lot of salad, and fermented foods like yoghurt, kefir, fermented veg (e.g. sauerkraut). What I think happened, and it was not my intention, was my gut microbiome rebalanced and I honestly did not have any of the expected cravings. It didn't take long for this to happen. Several years later, most of that time on very low dose pred, and I still eat very much this way although I have re-introduced more carbs, usually in the form of something like sourdough bread or brown rice or oatmeal. I have a theory that when we have food cravings it's because our microbiome is demanding their preferred food and if one can encourage the kale-loving fauna over those that love sugar or pastry, then everyone is happy, including the human!
Hi there Paula, I was diagnosed 5 weeks ago and started on 20 mg Prednisolone but it only reduced the pain by about 40% so last week my Rheumy doubled it to 40 mg for two weeks and yes, the pain has gone thank goodness. As I was pre-diabetic I was strongly advised to cut my carbs /sugars immediately to help prevent the diabetes 2 and weight gain that can be brought on by steroids. I looked up the keto diet and got a comprehensive list of ‘good’ foods, made a long list of everything (and there’s a huge amount to choose from)and plan my meals accordingly and drink plenty of sparkling mineral water. The result is I’m losing a couple of lbs a week, loving the meals and feeling feeling full. I don’t allow myself any snacks - just 3 meals a day and lots of fluids. This is from someone whose always loved her food and greedily over-eaten in the past so I’m delighted. I missed the rice n pasta mostly but discovered konjac ‘rice & noodles’ (Holland & Barrett) and they bulk up my stir fries n salads nicely and no carbs (no flavour either but take on food flavours nicely ). Hope this helps you, good luck x
Yes anything will help at the moment this is all new to me, I have never done low carbs or no carbs, I’m taking everything in!!
Hi 24 paula.My experience with prednisolone when first commenced on 20mg in September 2021 was: big appetite perhaps 4 meals a day, elated, restless and poor sleep pattern. I must say i have neither lost or gained any weight over the time period. I walk an average of 1.5 km most days. Back then I had to take Stilnoct 10mg perhaps twice a week to help sleep. Now on 3 mg and I am having less of the side effects of prednisolone. Stopped taking Stilnoct, don’t feel restless or elated anymore.
I guess when reducing the dosage of prednisolone, one encounters less of the side effects. Hopefully everything works out for you. Take care.
I noticed how I was eating and feeling, FATTER, after weighing myself I realised it was the steroids, but it was a shock, I have been losing the past 2 years I lost over 3 stone but with things not going to well it started to pile back on now I’m about 2 stone heavier, I wish I could do more exercise I work from home and that means sitting most of the morning in front of a computer, by lunchtime I’m so tired I have to sit down and relax, hopefully if I can get my head round this carb eating I may be able to slow down the weight if not start to lose again.It’s good to hear you have less side effects now your reducing the dosage down, thanks again.
Hi Paula I am so totally with you re, the eating and weight gain, with regards to slimming club can I just say 18 months before being diagnosed with PMR - last August - I had been going to Slimming World and lost 4 stone, I was so thrilled with myself , but, pride always comes before a fall I have now put it ,Plus some back on, almost went back to SW until it was pointed out to me SW is very carb heavy diet pots rice Pasta etc all free after such a long time of eating this way I have found it very difficult to swap and change and give up my pots and rice ! never mind we can do this. One thing I would really suggest is to buy the book " Polymyalgia Rheumatica and Giant Cell Artetitis by Kate Gilbert ( easily found on Amazon and very affordable ) It was suggested to me by someone on here when I first came on here ,and it has been invaluable , - written in laymans language |lol
Yes when you have been doing a certain diet you know what to eat and it works then you have to start from the beginning again, carbs really I have never done, think I tried Akins years ago but could not get on with it, so this is going to be a challenge.I ordered the book so it should be here tomorrow, let you know what I think, thanks for the info.
Well the book arrived this morning, I made myself a cuppa and sat down to start reading, 2 hours later I had read it, I must say it did shock me! I did not realise just how powerful theses steroids are, and when I had spoke to my consultant I was under the impression that I would be on the meds for about 6 months, reading the book I don’t think so, more like a couple of years!!!! I wasn’t quite sure I wanted to take in all I read, but at least I have some questions now to ask on Monday. I must say my pains have really eased and I actually want to get up in a morning, my concern is now what happens when I start to reduce the meds and my pains come back? I have seen first hand what steroids can do to you with my husband, it was horrible to see the state they got him in and it’s scary!!! Thing is I’m on them now so there is no going back!!!
I think I may feel better after Monday, I will ask the questions and just hope it’s not as bad as I feel it is!
I will let you know how I get on, thanks for all the advice x
You DON'T reduce the dose and the pains come back - you TAPER the dose slowly and in small steps to identify the lowest effective dose for YOU. Not me, not your husband, not any other patient with PMR/GCA your doctor has on his list. That is the lowest dose that gives the same result as the starting dose did. You start with a dose that will be above what you need to get a speedy result, clear out accumulated inflammation and give you a good baseline - then you taper. But SLOWLY.
It's a long time since I read Kate's book so I don't remember exactly what she said, but steroids aren't half as bad as you seem to think. Yes, they have side effects - but so do paracetamol, ibuprofen and any other medication you care to name. What effects steroids will have on you is difficult to forecast but it is possible to mitigate and sometimes avoid them altogether, especially if you don't try to rush at tapering the dose in the mistaken belief that that will minimise the side effects. What often happens is that your symptoms flare when you get too low and you have to go to a higher dose again - do that a few times and you risk needing higher doses and it is difficult to get things under control again so you end up taking more not less.
For a start, weight gain and steroid-induced diabetes can be kept under control by cutting carbs - especially processed carbs - drastically. That also often helps avoid the "moonface" and a low sugar/simple carbs diet is also anti-inflammatory so may even reduce your symptoms.
And before you panic and have a flood of questions - look at the FAQs first where a whole load of those questions probably have already been answered - certainly in general and so you can be more specific which helps us to help you too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
after such a long time of eating this way I have found it very difficult to swap and change and give up my pots and rice ! never mind we can do this. One thing I would really suggest is to buy the book " Polymyalgia Rheumatica and Giant Cell Artetitis by Kate Gilbert ( easily found on Amazon and very affordable ) It was suggested to me by someone on here when I first came on here ,and it has been invaluable , - written in laymans language |lol
My journey with Polymyalgia Rheumatica 
Polymyalgia Rheumatica - and Me
Journey begins with polymyalgia Rheumatica
Polymyalgia
Polymyalgia Rheumatica 
