I have just been diagnosed with PMR and GCA - I know nothing about these conditions, or what I should be doing apart from suddenly finding myself with a lot of medication to take. I am employed and get tired very suddenly, is this all part of these conditions?
What information is there about how diet and lifestyle and what may help?
Hi and welcome
This might be a good start for you. It has links to other information-
healthunlocked.com/pmrgcauk...
Others will along with specific advice regarding diet and working etc.
Don’t worry - we’ll get you through it!
I am so sorry you have been diagnosed with PMR and GCA. You are with people who understand and sympathise though. I just take steroids and vitamin D with calcium, so only two types of tablets. I don’t know if you have been offered others as well. I think the important thing is to recognise that you are ill and so you have to give into it. Rest, rest, rest and pamper yourself. I was worried about a moon face but someone said if you give up gluten and simple carbs it will stop it. Amazingly enough it did, although I may just have been lucky.
Read Dorset Lady’s attachment, it gives a very good overview of how to cope.
Hello. There’s a lot to take in at first; most of us have never heard of it. Do read DorsetLady’s link, but sit down with a cup of tea, it’s long and full of info!
Presumably you’re on a pretty high dose of Pred for the GCA. If you are, you’re probably feeling a bit knocked for six and quite possibly a bit hyper. It does settle a bit as you get used to it, however the fatigue is a feature of both Pred and the condition. This condition does demand a life change or at the very least some modifications because your body does need to heal. The Pred is helping the inflammation but your body will still be attacking itself, so rest as much as you can, this is going to be part of your life for some time.
Pred can make one very hungry and docs often make weight gain sound like an inevitability, but it isn’t. Unless you have other medical conditions that say you shouldn’t, start early on a very low carb, low salt diet with plenty of protein, heathy fats, veg and some fruit. This also prevents development of Pred induced diabetes.
I’ll stop there as others, and there are some very knowledgeable ones too, will reply I’m sure. We all know what it’s like and that it doesn’t stay that way. It really does help to educate yourself with this one too. Any questions, ask away.
Welcome to the forum. Sorry you have been diagnosed with the double whammy of pmr/gca. You have already had a welcome reply from dorsetlady our resident expert on gca and others will no doubt be along later. Please feel free to ask any questions you have and you will have lots! There is usually someone around most of the time.
As someone who ignored the warning on carbs please try and watch your diet and reduce your carb intake.
As has been said already please remember you are ill and need rest.YBB
Hi. I was working full time first two years after diagnosis of GCAonly. The very high dose 60 mg of pred made me hyper. My staff at work said I went into overdrive. I explained it to them and they would make sure I didn't overdo it. Sometimes I had to ring from my car for a colleague to come and carry my bag. I got a laptop trolley. It changes a lot but you can get through it. I tried hard to keep my sence of humour and have not let it stop me doing anything I want. The best thing a doctor did for me was recommend Pilates. It kept me mobile and helps with the pain and stiffness. Good luck. Accept all the help you can get
Very good book by Kate Gilbert and lots of advice on support website and this forum - Good Luck
You have some basic info now - over and above that, I think you will have to ask specific questions. Some of us could write about PMR and GCA for a week and still have more to say!
If you scroll back through old posts, time consuming these days I fear, you will find a lot of info but very mixed up. Less time consuming might be to go to my profile page and read my past posts and even some replies. Kate Gilbert's book is a good primer for PMR.
The booklet you co-wrote is still going out 'Living with PMR & GCA'. Free of charge as they were leftovers together with the last of 2,000 DVD's 'You are NOT Alone' - the garage will be empty very soon.
I was wondering that as I wrote the reply! You heard! Do we have it as a file? That might be a very good answer ...
Will have a look, John has just been here and took some books and DVDs for his support group..............he had used the the others we started him off with.
I do know I have the articles used all on file................must have the final proof reading somewhere.
And keep gardening if it gives you pleasure. All the above comments are good ones, ask anything, complain all you like, and no question is too silly. Rest, rest which is hard when you are working , drink lots of water, search for anti-inflammatory diet examples, and don't be afraid. Let others pamper you to the extent they want to and you want it. We're all here all the time.
Just to clarify: were you diagnosed with both PMR/GCA or were the two lumped together in the way you were told.? Because they are related, but symptoms are different. I assume you have been started on Prednisone. The dose would help answer the question.
Welcome to Gardening with an autoimmune disease. You will get through it.
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