PMR WEIGHT GAIN

[Sueloobyloo]

I was diagnosed with pmr this year, I was put on 15mg prednisolone, which really helped me, but the weight I have put on has made my breathing bad, so now I am being weened of them and I am scared that my pmr will return, is there anyone else with this problem?

[PMRpro Ambassador]

One of the things we push on the forum is to adopt a low carb diet when you start on pred - because it really does make a difference to the pred-associated weight gain and the risk of developing pred-related diabetes. Unfortunately, many doctors remain ignorant of the role diet can play so rarely warn their patients. The fat deposits around the midriff often do affect breathing in a mechanical sense but for a small number of people the pred can cause shortness of breath on exertion.

However - simply reducing the pred (which you should be doing anyway to find the lowest effective dose) isn't necessarily the answer since that is likely to release the PMR symptoms - and I was short of breath and gained weight with undiagnosed PMR and no pred.

[Sueloobyloo in reply to PMRpro]

Well I was the opposite, I was losing weight before pred but it was the pain and my mobility that affected me and my doctor put me on pred. I will just have to find a happy medium.

[PMRpro Ambassador in reply to Sueloobyloo]

Weight loss with PMR/GCA is more usual. But the weight gain WITH pred is very common - but can be mitigated and even avoided with diet.

[SnazzyD]

Hello, I started on 60mg Pred for GCA. My doctor gave me an information sheet that completely understated the experience of taking Pred and just said words to the effect of eat a healthy diet. Thanks to this forum I soon learned that cutting my carbs drastically was the way to go. I also realised that for me that meant cutting out all pasta, rice, potato, flours, sugar and maize. Fats were ok and I needed them to absorb vitamin D for my bones. From then on weight and increasing blood sugars was not an issue. What fat I had still concentrated around my neck and middle like it does with other people, some of whom say it affects their breathing because of the constriction. Pred did make me out of breath on exertion so I did less. Yes, Pred can make one feel pretty dreadful and I’m sure if doctors were more explicit about it, they wouldn’t have patients in such distress causing a knee jerk reaction on their part of rapid reduction. This may not be your case but this pattern seems to crop up on a regular basis. If it were me I’d overhaul my diet, lose weight and avoid a full blown flare by having to reduce Pred too early. Also, if the PMR becomes GCA you would have no choice but to have high dose Pred, so it’s worth controlling what you can so your Pred journey works for you.

[Sueloobyloo in reply to SnazzyD]

I will have to try something and thank you for the heads up.

[Koalajane]

You say you are scared your PMR will return. It most probably is still there and the prednisolone is doing its job. Without the pred you will soon find it is still there I would think

[Sueloobyloo in reply to Koalajane]

I will have to have a word with my doctor and see if there’s an alternative.

[PMRpro Ambassador in reply to Sueloobyloo]

PMR is a chronic disorder - it remains active for up to years and as long as it is active you will need some pred to manage the inflammation. If you are in the UK, there is NO alternative to pred. Except stopping pred and living with the PMR symptoms - having done it, not out of choice, it isn't a pleasant experience. And it isn't as simple as pred bad, no pred good - without it the unmanaged inflammation is doing damage to the body and increasing the risk of other illnesses later - including cancer and peripheral vascular disease.

[Sueloobyloo in reply to PMRpro]

WoW, I didn’t know that as my practitioners nurse has told me that I shouldn’t be on pred long term and that when I come off pred that hopefully the pmr will be gone, so I think we need educating on this, I will be seeking more help on this condition plus help with my weight gain. Is there any form of light exercise I can do as my mobility isn’t that great and anymore information that would help me as I would really appreciate it. Thank you so much for the information that you’ve already given me.

[PMRpro Ambassador in reply to Sueloobyloo]

I'm afraid pred cures nothing - it is a management strategy to allow a better quality of life, at least less painful, while the autoimmune condition is active and, hopefully, eventually burns out but that isn't a short term process, at least 2 years usually and often longer. Stopping pred for PMR is like telling a patient with rheumatoid arthritis to stop taking their DMARD drug - the symptoms come back.

Have you looked at the FAQs? Loads of information there - collected wisdoms of the forum with the backing of medical science facts. Being updated regularly.

healthunlocked.com/pmrgcauk...

Exercise - what you can manage is good. I did aquafit - the water helps a lot - and until recently walked for half an hour every day but that is out at present because of hip bursitis and achilles tendonitis though it is improving.

[Dochaz]

4 months in, on 22.5 mg now and tapering, I have gained maybe 1.5 to 2 kilos so far. My diet was quite low carb anyway beforehand so that probably helps. I don't know whether to expect more weight gain as time goes on.

[Sueloobyloo in reply to Dochaz]

Hi there, since being on these tablets, I seem to have a lot of cravings, such as chocolate, which I never ate before, I never seem to be satisfied and it’s driving me crazy, as I don’t want to feel like this, hence why I’m coming off them.

[Dochaz in reply to Sueloobyloo]

Chocolate is ok, I think, if it's dark chocolate with a high cocoa content. My brand is 88%. I couldn't go without!

[Koalajane in reply to Dochaz]

Only in moderation!

[PMRpro Ambassador in reply to Sueloobyloo]

That is because of the way pred works - it triggers the liver to release uncontrollable random spikes of glucose from the body stores. In turn, insulin is realease as the body expects to get more glucose from a meal, but that never comes and the insulin makes the glucose level fall rapidly and to too low a level - making you crave carbs and sugar to bring it back up. This creates a roller coaster,

Cutting carbs in your diet, the thing you can control, can smooth out that rollercoaster and the cravings also smooth out. It requires discipline I admit - but it does make a big difference. You have to identify the things you eat with carbs - and cut them, sometimes drastically.

[piglette]

I am so sorry you have PMR. As you will have probably realised once you get PMR it is in the body forever, but it does go into remission in around two years sometimes longer sometimes a bit less time. You cannot just stop taking steroids as your adrenal glands go to sleep as the steroids do their job for them. They start to wake up around 7mg. You are among a lot of people who put on weight even though your diet has not changed. I became a nutrition guru because of the PMR and steroids and bored everyone! Have you been offered a Dexascan to check your bone density? Also are you taking Vitamin D with calcium?

[Sueloobyloo in reply to piglette]

I don’t know much about pmr, but i know a lot more now talking to you guy’s and I can’t thank you all enough. I am going to get in touch with my doctors surgery and sort something out, as nobody has explained to me about pmr and with the surgery letting me ween off the tablets because of my weight gain, well they obviously need educating on pmr as well, thank you again.

[piglette in reply to Sueloobyloo]

I think there are a lot of doctors who could do with a course on PMR!! and steroids…

[Karenjaninaz]

My breathing was affected by prednisone and I have asthma as well as some restrictive lung disease from scoliosis. I ended up needing oxygen 24/7 after mega steroids after a flu shot reaction. The medical literature mentions steroid muscle wasting affecting even the diaphragm and other breathing muscles. This needs to. Be considered in persons with underlying pulmonary disease.In my case, staying in the house for fear of Covid for two years coupled with less physical activity sent me over the edge. In my case age is a factor as well since I’m 80 years old. My suggestion was to be keep as physically active as possible. The temptation is just to sit there and veg but that’s what I did and it didn’t work. In the literature talks about needing more magnesium when you’re on prednisone and I had started to take more magnesium about two years ago. I have never been obese but I am now shaped like a potato. I am on 10 1/2 mg of prednisone after having been down to 5 mg last year before the asthma exacerbation. They had given me very high doses for several weeks and I had to start all over again and that made me weaker. I am waiting for a slot in pulmonary rehab .