if i reduce carbohydrants do you think it will affect my weight while I am steroids. I seem to be eating loads of it now. Also i am on 15mg at moment and it has really helped me, i think i came off too early before, can i stay on 15mg for 6 months ?
Hi Mary. When I was first diagnosed with PMR a friend (who has had it for 4 years now) advised that one of the downsides to steroids was putting on weight. I seem to have found an appetite that I did not know exsisted so am munching my way thru biscuits and sandwiches at all hours so must try a bit of self restraint. As far as dosage is concerned I would not like to think of staying on 15mg of Pred for 6 months and would hopefully be dropping 1 or 2mg per month if I possibly could. Good luck in your quest to lose weight.
https://patient.info/forums/discuss/newly-diagnosed-pmr-259207
Have you read any of the other threads Mary, there is a lot of info to go through
I have found restricting carbs drastically (nothing proccessed, loads of veg, moderate fruit) has helped me lose weight. Discipline and avoiding munching is essential - eat carrots and cucumber for a satisfying snack if you must, preferably drink water first - it really helps avoid that desperation to do something with your mouth!!!
One top group keeps patients on 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year - it reduces flares to 1 in 5 instead of 3 in 5 patients. Then they keep them at 10mg for a year. Many of us like to reduce 1mg at a time, even spreading the 1mg reduction over a few weeks and that is seeming to achievve excellent results in terms of flaring.
It makes sense that if you can drop the carbs you will lose weight. What the preds seems to do is give you an appetite, rather than in itself make you fatter.
The question is, how easy is it to drop the carbs?
As for 15mg for six months, it does seem a bit high. But I've managed on 5mg for 6 months and so far, so good.
I've been on preds of various doses for 6 years and recently had a Dexa scan and for my age my bones are in good nick. Liver seems fine, too.
If you must take a high dose, I suggest you see a nutritonist and find out what supplements you can take to lower the preds' toxic effects.
I thought i sawcpeople on here say keep on high aspossible and come down slowly, so why is 6 months too long. .Thankyou
I doubt anyone said "keep as high as possible" although we will have said reduce slowly. You start at 15mg until the symptoms are under control - about 6 weeks usually - and then reduce to find the lowest dose that controls the symptoms. The pred doesn't cure anything - it just manages the symptoms to allow a decent quality of life. There are many side effects with pred, they are all worse the higher the dose - so you want the lowest dose that you can manage with, not too low so you only have pain again and have no benefits.
This paper gives a good reduction scheme: Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell arteritis by Quick and Kirwan. If you google that you will get a link whereyou can read it, print it off, show it your GP - some is easy enough to read for most people but it is aimed at GPs. This group in Bristol give 15mg for 6 weeks, 12.5mg for 6 weeks and 10mg for a year before then reducing further. It reduces the risk of flares to 1 in 5 instead of 3 in 5 with other reductions.
There are no supplements that really "lower pred's toxic effects" although a good diet will help in other ways.
Pred can cause weight gain on their own by the effect on fluid retention - I didn't eat much with pred but put on a lot of weight with medrol
Hi Eileen. Have just read your reply to mary238 which I find extremely helpful. As you point out Preds don not cure anything but do offer you a better quality of life so finding to correct dose to be able to manage your condition is vital.
I assume that when you hear of people making a full recovery from PMR this is mainly due to their own metabolism and their immune systems ability to right it self. Will look at Quick and Kirwan as suggested. Many thanks again. Dave (tavidu)
Thankyou Eileen, i will see my doctor next week and I am going to read and show my doctor the instructions. You are so helpful, I cannot get the details up of any london or South East support groups. Thankyou because I was even thinking of staying on 15mg for a year, just shows what i knew !
google PMRGCAuk and look at there home page for a list of existing support groups.
Ah. I didn't know that preds cause fluid retentiuon. Thanks for explaining...
As for there being 'no supplements that really "lower pred's toxic effects"', I know you are an authroity on a lot of things, Eileen, but you could be wrong about this.
I've been following my wise nutritionist's advice for 7 years and, so far at least, his suggestions seem to be working. And it's not just diet, which I have always been careful about anyway.
Thankyou Mrs K
When people recover it is probably the autoimmune disorder burningout dying down - that happens in many autoimmune illnesses. If you are lucky it stays died down - but it can return in PMR. It appears less likely in GCAfor some reason.
I'm not getting into an argument about supplements here but I have been on 3 types of pred in my PMR career. One was OK, one was horrendous and the current one is amazing - not a side-effect to be felt and I have lost over 15kg on it. Not everyone has side-effects and everyone is different. Ergo you cannot say for certain it is the supplements - the only supplement I take is calcium and vit D.
Why see a Nutrionist when they charge you.
Your GP of Consultant can send you to the Hospital Dietician and they are qualified people and don't charge.
Three different types of pred? You meand prednisone? Do tell us more! I never knew there was more than one.
The "amazing" one sounds specially interesting...
Fair enough. Where I am right now that's not an option.
Just the formulations really - and I'm afraid the amazing one probably isn't a option for you either. It was developed for rheumatoid arthritis and isn't approved for PMR in the UK or the USA (was not approved for anything in the US a few months ago), It is very expensive compared to the other sorts.
But I am in neither place... do give the name, then I can at least check it out with my rheumy... (I have RA - my PMR seems to have gone into total remission)