Diet for PMR

[UmiMck]

Used to be on low carb and high meat diet. Now with PMR trying plant based diet which is often high in Carbs. Any thoughts? Been on 15mg for 4 weeks and struggling to reduce it to 12.5 mg. Was ok for a few weeks now shoulder pains have returned.is it diet related or just PMR

[123mossie]

Hi UmiMck my pathway began similar, started on 15 and advised to drop to 12.5 after 4wks. The pain crept back fairly quickly & I had to go back to 15 again. It took about four attempts over as many months before I was successful with 12.5. As regards diet, it may influence the side effects of pred but not the course of the disease itself. Pmr is totally in charge & we have to work with it. However patience is the key, you’ll get there in the end.

[DorsetLady PMRGCAuk volunteer]

Hi,

We often suggest low carb, or at least cutting out refined carbs - to help with the weight gain that Pred can sometimes cause. But really, a good balanced diet with plenty of veggies is usually all that is required. Others will wade in with their views.

Although there are some recognised anti -inflammatory foods - turmeric, ginger etc - your pains are much more likely to be PMR related - as discussed in previous post. And whilst you have them, please don’t attempt to reduce.

As I think was stated in previous post, 15mg may not be enough as the initial dose in your case - you may need to give it a little longer, or increase it....so please speak to your doctor.

[UmiMck in reply to DorsetLady]

Thanks.

[SheffieldJane]

Have a look at Keto diets on-line. Interesting recipes and not too hard to stick to.

[MAMET]

Take a look at Tim Spector's work on gut biome. That's what governs your health and weight. Need a wide range of fruits veg nuts seeds bit of meat fish cheese milk, olive oil and foods high in Omega-3. Keep off processed foods at all costs and real sourdough bread not commercially produced has lower levels of gluten which might be a trigger for inflammatory conditions. Worth a try to see if it helps.

[Mary63 in reply to MAMET]

I agree. Tim Spector’s books ‘Spoonfed’ and ‘The Diet Myth’ are very interesting and useful.

[UmiMck in reply to MAMET]

Thanks. Will do.

[PMRpro Ambassador]

If a plant based diet helped significantly with PMR we'd have no vegetarians on the forum with it.

The reason for the low carb approach we talk about is because pred changes the way your body processes carbs and pred triggers the liver to release spikes of BS from the muscle stores of glycogen - and that contributes to the development of steroid-induced diabetes. There is nothing intrinsically wrong with carbs - but while you can't control the liver source you can control the dietary source of carbs and simple sugars and that helps avoid or reduce the risk of weight gain on pred and the diabetes problem. Again, there is nothing wrong with fruit - except some are a source of large amounts of carbs. As are some vegetables, such as root veggies. Sugar is sugar, whatever form it comes in and every helping adds up. Some people need almost keto to lose weight - a single banana takes you to the carb limit for keto without adding anything else. Others can get away with just cutting processed carbs - and yet others lose weight on pred!

A well balanced diet, using above ground veggies to provide bulk without lots of carbs is what is needed, especially protein for muscle regeneration. Unless you are going about it particularly carefully that is difficult to reconcile with plant based.

How are you going about trying to reduce to 12.5mg? Were your PMR symptoms well controlled after only 4 weeks at 15mg? Dropping 2.5mg all at once is a big drop.

I'd also say it isn't a good idea to make such a drastic change to diet AND change dose at the same time. It makes it difficult to decide what might be causing what.

[UmiMck in reply to PMRpro]

Struggling on 15mg with shoulder and leg pains so probably won’t reduce to 12.5 this week. I am sure trying to push myself to walk for 40 minutes with pain has not helped me at all. Don’t have an appointment with Rheumatologist till the end of March so not quite sure whether to continue on 15 mg. I take on board about the drastic change in diet and low carbs.

[PMRpro Ambassador in reply to UmiMck]

Do you know how far you can walk WITHOUT suffering payback next day? Start with that and add a couple of minutes at a time - but only after you have had a rest day and you didn't hurt. Then stay there for a few days before tyring another couple of minutes.

Your muscles are developing DOMS - delayed onset muscle soreness, They can't tell you that you are asking them to do too much - until it is too late. Exercise training involves causing tiny tears in the muscles and when they heal the muscles are stronger. In PMR those tears don't heal as quickly - and if they are too bad it may take weeks, months before the pain resolves. If you keep trying to exercise they just can't heal and the pain remains. With a very slow build up you can get back to a decent amount of exercise - but it is a slow process that really can't be hurried.

Pred won't relieve that pain - it is injury more than PMR. Cold or warmth might but which depends on the person so you have to try. But for the moment - try resting a bit more.

[UmiMck in reply to PMRpro]

I can walk at home all day long without any pain. Can do 1000 steps at home quite easily. As soon as I leave the house for a walk the pain in the legs starts within 100 yards and continues till I stop walking. So I guess at this stage I should give up walking at all outside the home apart from short trips to the shops.

[PMRpro Ambassador in reply to UmiMck]

If it is peripheral vasclar disease as I suggested it could be that would all fit - only longer distances, you never walk that far in one go in the house. The first thing vascular specialists suggest is to "walk through" the pain which over time should increase the distance you can walk as the body creates a sort of back roads/bypass blood flow, called collateral blood supply. But it really needs checking out, especially if it is both legs equally as that could suggest the blockage is in the abdomen.

[UmiMck in reply to PMRpro]

Thanks. Will try and see a vascular specialist

[nickmits in reply to UmiMck]

hi- ITS NICK from toronto- im 60 yrs and got pmr 4 months ago- and the rheumatologist saw my blood markers out of range a month ago and said I have pmr- otherwise im very healthy but this has been very hard-- I had shoulder ( at the clavicle ) , neck back upper and lower and hips-- all painful and stiff-- after one month Im 50% better- and couldnt walk 2 mins before now I can walk 1 hour- but the pain is mainly in the shoulder and neck now-- im on 15mg pred now-- so make sure you get to see a rheaumatoilgist right away- and he does a FULL arthritic blood marker tests- thats how mine was found. let me know your thoughts.

[Cosmos22Marigold]

I have now balanced my eating habits with the Mediterranean diet but not completely on the diet. Just eating the foods in amounts that suit me. Find it so much better for me. Love all the roasted veg plenty of nuts and fruits etc. I smother the veg with ginger tummeric black pepper and hope its doing me good. Tastes good I might add. Weight staying steady at the moment. I took the advice from all on the forum and am only reducing my steroids by 1mg at a time and slowly. It seems to be working and has picked me up this week after feeling so low. I have just ordered the book on pmr by Katherine - sorry forgot the last name. I'll look it up.

[PMRpro Ambassador in reply to Cosmos22Marigold]

Kate Gilbert

[Cosmos22Marigold in reply to PMRpro]

Thanks. Memory is blank sometimes then it returns.

[PMRpro Ambassador in reply to Cosmos22Marigold]

THAT happens to us all!

[SallyLeon]

Hi UmiMck-I'm fairly new here having been diagnosed Sept 2020. I was originally on 20mg prednisone and reduced fairly easily to 15mg. I reduced from 15mg to 12.5mg and within a couple of weeks had increasing pains returning, so after reviewing posts on this forum, I went back to 15mg. I then had a telehealth appt with my rheumy who completely agreed with my return to 15mg and had me stay on that dose for another month. I then reduced to 13.75mg for a couple of weeks, with no problems, and then went to 12.5mg for a month. I have a telehealth appt with my rheumy on Tuesday and expect that I will be reducing to 11.25mg for a few weeks, and if all is good, then down to 10mg.As far as diet is concerned, I cut out all meat and most processed food this year. Several on this forum have given wonderful advise regarding diet, so I have been careful to watch my sugar intake. My bloods taken this week show a greatly improved cholesterol level (ratio was 4.8 and is now 3.5 with an increase in HDL and decrease in LDL) and sugars are still within the normal range, despite the prednisone; weight has actually reduced by a few pounds as well!

This is a strange journey, and I'm learning as I go, but this forum, which is the first thing I check every morning, has helped me immensely. Thank you to everyone here for all of your advise and experience!

❤️

[HeronNS]

I gave up meat many years ago although still consume dairy and a small amount of fish. With PMR/pred I gave up virtually all "white" carbs, increased my protein intake by eating more nuts and seeds and a lot more rather heavy duty salads (based on kale instead of lettuce). I didn't give up vegetables high in carbs, like root vegetables, as I'm underweight as it is but many others do, at least for a time.

[SallyLeon in reply to HeronNS]

I've given up most dairy, although do still have organic 1% milk in my tea, and eat a little cheese. I switched to oatmilk and non dairy yogurt, eat whole foods such as brown rice, dried beans and lentils, eat one or two eggs a week and eat fish several times a week, all in an attempt to be overall healthier. While it may not help my PMR, at least I'm taking charge of the rest of my body as much as I can, which gives me a sense of control when dealing with an illness which makes me feel totally out of control!

[Meggsy]

I found success reducing pred by 1mg a month from 15mg to 10. Had trouble getting from 10 to 9 so have tapered by 0.5mg since. Slow and steady wins the race (hopefully)! Good luck. 🌻