Hi all, I have been suffering with very painful muscle ache for some time now, every time I went to the doctors i was told it was the menopause and basically to put up with it, then one doctor realised that something else was going on, he thinks i may have Polymyalgia rhuematica, I've had lots of blood tests and had a letter saying i need to make an appointment to discuss the results and medication. If it is pmr then he said i would be on steroids but I've read that they have some not very nice side effects, one of them being weight gain, when my dog was on steroids years ago her head swelled up almost twice the size it should be,also depression is another unwelcome side effect, so I've got myself a bit concerned. Has anyone had any problems with taking steroids x
Steroid weight gain: Hi all, I have been suffering... - PMRGCAuk
Steroid weight gain
Yes, but if you do have pred, there is nothing else and if you do not take it, it can lead to its big sister GCA and that is a risk no one ever wants to run.
If you do have to take pred, there is loads of info re weight gain and to kick you off, here is a link: pmr-gca-northeast.org.uk/gr... when you get there, click on Summer 2016, Page 4, read and download.
Also your dog is a dog, and you are a human and some people lose weight on pred and then they are in trouble. BTW I have nothing against dogs either.
Great newsletter.
Hi
As jinasc says IF you have PMR, there is no other treatment than steroids.
Yes they do have side effects, but what drug doesn’t, and by no means are you going to get all, or even some of them. Even if you do, then can all be managed.
Steroids get a very bad rap, very often unfairly so!
Please let us know how you get on at your appointment.
If you have Polymyalgia Rheumatica then you will soon feel that prednisolone is a magic drug. Yes it can have side effects including weight gain, depression, sugar spikes, facial hair, but it works to keep the inflammation at bay. Not everyone has the side effects, I actually lost 3 stone in weight by going on a low carb high fat diet. Good luck and try not to get worried about taking it.
Hello. Weight gain isn’t a given, especially if you reduce carbs drastically and salt. It really isn’t all doom and gloom and don’t forget, you start on a moderate dose and reduce slowly, it’s not up all the time. If you decide to tough it out through fear of Pred you run the risk of GCA which means very high doses to prevent blindness. On the good side, if you are on the right dose for you, you should feel relief from muscle pain of PMR and for most it is heaven. Remember Pred isn’t a cure, just protection from inflammation caused by the autoimmune process, so lots of TLC and don’t go mad doing lots of stuff once you feel better.
I reduced carbs drastically and lost 20 pounds in weight. It was easier than I thought. No potatoes and no bread did it. Having said that all is not wonderful as I’m in pain at the moment. D
Thank you to everyone for there comments x
Welcome to the forum. Steroids are the only thing that works on pmr and reslly isnt the bad guy in this. If you take the advice about carbs given above you can avoid weight gain and for most of us prednisolone gives us our lives back.
Feel free to ask questions, there is usually one of us around to help you.YBB
Thank you x
I didn't gain weight and I felt so much better physically after pred worked its magic my post retirement depression lifted. We are all different and no one gets all the possible side effects.
I started on the (I think) usual 15mg per day. Felt like a new woman within hours and didn't put on any weight or get any mood swings. It really is worth it just for the ability to move properly again! As has already been mentioned here we all react differently. My sleep pattern is a little erratic now which is a side effect but equally it could be hormonal. A lot of us are at the menopausal stage and it seems to me some of the pred. side effects mimic hormone changes - so who knows.
Thank you, I'm also going through the menopause, I think that's why at first the doctors didn't seem to be interested in my symptoms, thankfully they are now taking notice. the thing that I'm worried about is I'm only short and when I put weight on it really shows and I get quite down about it, so I'm worried I'm going to get depressed, we have a lot of depression in my family, I've had it really bad years ago and don't want that to happen again, it really was not a good time , hopefully I will be like you and some of the others and not put weight on x
Depressive mood is also a symptom in PMR and long term chronic pain will also make that worse. I had PMR for 5 years before I got pred and in that time I gained weight because of the enforced lack of activity due to the pain and stiffness of PMR. I didn't gain more weight on prednisolone, it just redistributed a bit. I DID gain a lot of weight and had other horrible side effects on methyl prednisolone (Medrol) but that is almost never used in the UK. Switched to prednisone and adopting a low carb diet led to a weight loss of 35lbs and it stays off providing I am strict about carbs.
None of the feared side effects of pred are inevitable, and most of them can be managed when you know how. Just ask!
You may or may not gain weight ..in my case I was concerned about spiking blood sugars and weight gain so completely cut out sugar except the natural type in fruits and wine 🤪therefore covered both bases weight gain and increased blood sugar
You have some great answers here about why you need to take the steroids and how to manage the weight. Can I just say something about the depression? Now everyone reacts differently but I was ver depressed before starting on steroids, I think it is a symptom of PMR itself. Once I was on steroids and all my symptoms were under control, I was very content, the happiest I’d been in years. I suppose my point is, you need this, take it, you might be surprised how well you do, I certainly was. I sat for three days with the prescription in my hand crying and saying I can’t take this stuff. I’m so glad I did because i would have developed GCA. The symptoms for that were already beginning to show.
Please take all the advice you can get. Stay in touch with this group, the people here are amazing for advice, good sense and support.
Best of luck!
Thank you, my husband already says I'm miserable all the time because of the pain, so maybe when I'm pain-free I will feel a lot happier x
You may not be pain-free but you should feel a lot better, I spent 5 years in the sort of pain you are in - because I wasn't diagnosed. I picked up my first pack of pred and stood outside the chemist to take my first dose I was so desperate for relief. Six hours later I could walk down and back up stairs normally - it wasn't perfect but no contest ...
If you do have PMR and you do start steroids just take it one day at a time and deal with your symptoms as you go. You can manage the side effects! The prednisone gave me my life back. As others said, a low carb low sodium diet is very helpful in managing weight gain. Get the carbs out of the house so if the prednisone does make you hungry you have only healthy options to choose from. And remember even when you start feeling better that your disease will still be active even though the pain is controlled. So be kind to yourself and slow down!
Hi Poppylop. You have the same concerns as me with steroids and I have had reassuring comments on here.
What did your blood tests reveal in the way of ESR and CRP?
Mine apparently were “normal” and the GP
said I don’t have PMR as the pain has once again lessened and also PMR he said, is symmetrical and I wouldn’t be able to get out of a chair easily. But he can’t be 100% sure! I guess it’s a waiting game as to whether it’s PMR or flare-ups if Osteo-Arthritis.
Good luck with your appt. try not to worry x
Hi, I havnt been told my results yet, I had a letter two days after the blood test saying I needed to make a routine appointment to discuss my results, I can't get an appointment for two weeks x
Hi poppylop, my dog had steroids years ago and stole food from everywhere to put weight on. Fortunately we supposedly are able to make better choices! I did have a few weeks when, in hindsight, I allowed myself to get sucked in to the idea of great I am hungry, I can eat what I like because it's the steroids...then I got a grip. I cut my carbs down and increased my fat intake. This fat increase ran counter to all the diets I had ever been on. But I can tell you that low carbohydrate and high (good) fat eating is the best eating plan I have been on. I have lost about 3st and haven't even noticed it. I am not perfect with it. I don't feel bad if I have a bit of dessert while eating out or whatever. I am probably reasonably good at eating that way 80 to 90% of the time. And fruit is usually my vice...and sourdough bread. The olive oil and butter I have are the thing that make food satisfying rather that the "sugar"/carbs. Its really important you have the fat if you can have it. I find it hard to eat too much fat so it's not cupfuls you are having - just enough to satisfy you. Oh and my dog lost a kg too, just by not having my pasta leftovers a couple of times a week.
The main thing is the quicker you take the pred and the slower the taper the better you will feel. Having had a history of depression I can honestly say that pain and feeling fatigued and ill make me depressed. Pred certainly hasn't - though I realise everyone is different.
Here's a 7day free view of low carb so you get an idea of the sort of meals you can have.
And this gives you access to how many carbs are in everyday foods...
ditchthecarbs.com/guide-to-...
Good luck🌻
Thank you x
Some lovely recipes in there. Thank you.
Hi, I was on Pred for nearly 20 years, on varying doses and injections too, and as you can imagine I put on a lot of weight in that time. I finally weaned off the steroids around 4 years ago, and in the last 2 years I have lost almost 3 stone without dieting or exercising! I can only put this down to my body returning to its 'natural' balance as even a trip into town takes me 2 days to recover from even after all this time. Another stone and I will weigh the same as when I married, 30 years ago. I have also escaped type 2 diabetes with this weight loss as that was the next big health worry. So maybe its just my metabolism, or perhaps you have to be patient, I really don't know.
Regards
Macdoris
Hi Poppylopp, I'm still quite new to taking the Pred, was diagnosed mid-June. In common with most people's experience, it felt amazing when I first took it, as I'd had so much pain and stiffness which in turn was getting me down. So I do believe in taking it, even though I've never liked the idea of 'giving in' to Big Pharma. I'm not entirely pain free, but it's low-level and doesn't stop me functioning as I would wish.
I sympathise with your concern about putting on weight. For many people this is a very small price to pay, and people do say that if it does happen it's not permanent. Personally, trying not to get too fat is a lifelong battle; my weight has always preoccupied me (since I was a 'chubby' 8 year old). I know I am a much happier (and nicer!) person when I feel in control of my weight. So from day one of the Pred I've been following a low carb diet, which many others here have mentioned. I haven't ditched the salt entirely as I have a 'salt tooth' but I have substituted a low-sodium salt, and am weaning myself slowly.
I've also not entirely ditched the alcohol, as a glass of wine with my husband in the evening is one of my sweetest pleasures. If anyone tries to tell me alcohol is bad for me, it's empty calories, and it's not low-carb, all I can say is that I've stopped eating bread, pastry, rice, pasta, potatoes (actually a few potatoes have snuck in), cake, puddings, biscuits, chocolate and between-meals snacking... and something's gotta give!! I ought to just add that I do take supplements - Calcium, D3, K2, Magnesium and a multivitamin. And I take moderate exercise, unless it's a day when my body's really saying no.
Anyway it's been nearly 2 months now and so far I feel great. I believe I'm keeping some control over my body and helping it cope with both the PMR and the Pred. I definitely haven't put on fat, if anything I think I've lost a bit. I'm lucky in that I haven't experienced feeling hungry - if anything I get less hungry these days. I'm also discovering new foods and trying new recipes (not all successful but many have been!!) So to cut a long story short, so far the low-carb route is working for me and I recommend it.
Best of luck! And this forum is great too - I've been helped so much by the hugely knowledgeable and supportive people here.
Thank you for your reply, it's true this forum has told me so much more than any doctor has. I am going to find it so hard cutting out sugar as I have a massively sweet tooth, I don't drink or smoke so my pleasure is going for afternoon tea with my bestie, I could write a book on it i go that often, also cutting out carbs is going to be tough as I'm quite a fussy eater but I do love bread, rice and pasta, though it will probably do my tummy good as I suffer with ibs and ulcerative colitis. I don't actually know for definite if I have pmr yet but everything points to it, just got to wait to get my results, if it's not then God knows what it is x
You are right that steroids have side effects, just like any other medication. That's why you need the right measure and a doctor's prescription. I don't recommend self-medication and if the doctor sees the need to take steroids, ask him to calculate the minimum dose for you. I am sure that in this case, you will not have any side effects. Moreover, steroids will solve your problem. They are often used for medical purposes, and so that you don't worry, I found a good article about it steroidcycle.org/ . You can read more information about steroids to find out all the pros and cons of using them.
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