I've been diagnosed with PMA and wish to avoid steroids.

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I'm looking for advice on any alternative therapies and diet which could help. I have been having acupuncture which has helped with my fatigue and muscle weakness. The pain in my shoulder and ribs is very bad in the morning or if I've been sitting still for a while but it's not completely unbearable and not my main worry at the moment. I've been very healthy all my life except for low grade endometrial cancer 3 1/2 yrs ago which I am completely clear of. I have always taken care of myself, eaten healthily and have been practising yoga for 20 yrs and am appalled at having been hit with this. The danger I know and my main worry is of developing GCA. Is there anything I can do to lessen the chances of developing it without resorting to steroids? I have found it hard to find any information on alternative therapies and feel I am being pushed to take steroids which is getting me down.

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  • Posted

    Even if you find something which allows you to survive PMR (which is what I assume you have since you mention GCA) without steroids, please do be aware of the risk of developing GCA and please do not deny any such symptoms. If you do develop GCA then you run the risk of losing your sight if you refuse steroids. And there is no going back.
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    • Posted

      Thanks for responding. It's possible I may end up taking them, but I would like to avoid that if possible and just stay aware of any new symptoms such as pain in the temples, jaw, different headaches etc that could indicate GCA and then I would seek immediate attention and think again probably. I'm drinking turmeric and ginger tea with black pepper which I've been told is good for reducing inflammation. I'm also interested in any advice on diet specifically for PMA without steroids. 

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    • Posted

      If you want that sort of advice - ask on the PMRGCA forum. We do discuss diet a lot. What we rarely do is discuss alternative therapies because there aren't any that work 100% - just complementary ones. 

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    • Posted

      This group is called 'alternative and complementary medicine' so I thought I might get some advice re alternative treatment. I've read through the PMA posts and there seems to be very little support for alternative treatments. Of course I realise that alternative treatments are not proven to work 100% but seeing as I don't want to take steroids I am willing to try. I will post in the PMA group as well.

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    • Posted

      There isn't because if you want to try alternative treatments you are sent here, it's the way the forum works overall - but we do talk about diet and therapies that have helped us in PMR. Low carb, adding turmeric etc and how to use it, that sort of thing.

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    • Posted

      I'm drinking turmeric and ginger tea made with pepper which I believe is good for inflammation. Yes I'm interested in diet and therapies that help. Mostly the information I've come across is advice on dealing with the side effects of steroids rather than diet and therapies to help with PMR alone which is the reason I've posted here since on the PMR group it appears that most people are on steroids. Do you know if meat is recommended? I have read that all meat especially red meat causes inflammation, however I'm not sure if this information is out of date. I eat chicken and fish but not red meat, though I could happily cut out all meat. 

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    • Posted

      Depends which website you look at I suspect. There is a lot on the internet if you google anti inflammatory diet - ignore the claims you can cure cancer and RA, they simply aren't true in general. But you CAN improve things if you are very strict and can stick it out. 

      Have you looked at the HealthUnlocked PMRGCA forum? It is far more loosely moderated and there is a lot of discussion there about diet than there is here. We are still almost all on steroids - and there are several of us who had tried all sorts of things before, not always out of choice - but the attitude is quite broad.

      A study some years ago found a strict vegan diet relieved joint pain in half of RA patients -  return to animal protein of any sort brought the pain back and half found no effect at all. Most of them gave the diet up because they found it too restrictive - long term it can be very hard work, especially when it makes it hard to go out for a meal or visit family and friends. It is probably easier now with the increase in awareness and desire for celeb diets! Most of them are rubbish by the way - not to mention VERY expensive. For some of them I couldn't have done it physically - anything that needed chopping or more than 10 mins prep was out. If you just tell the chef what you want it is a very different matter rolleyes

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    • Posted

      Thanks Eileen. I will look on the health unlocked website. I have no problem with diets. I've been vegetarian most of my adult life and only started eating animals because I was suffering from fatigue and was advised to eat fish and chicken. At the moment I am dairy free and gluten free, and yes, I know this sort of diet gets some people's backs up but I reckon it's worth it if I can avoid the steroids. My main concern is to remain as healthy as I can in the hope that GCA doesn't get me.

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    • Posted

      It must be hellish trying to be almost vegan and gluten-free. My problem is not gluten - but wheat starch. If I eat much I develop an awful and very itchy rash a few weeks later which then lasts for weeks. I'm suffering at present after eating some wonderful Fortnum & Mason ginger biccies the nephew brought us! It'll have to be one a week from now on!  My granddaughter is vegan (has improved her asthma no end but she was allergic to cow's milk as a baby) and finding something that works for both of us can be interesting!

      I was gluten-free when my PMR manifested - so I'm rather sceptical that chucking big bad gluten will make much difference. It certainly makes a difference cutting carbs in general when you are on pred though. Adding to your diet - oily fish, turmeric, garlic and ginger seem to have helped some people but didn't replace pred.

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    • Posted

      To be honest I'd much rather do as much as I can with diet if I can avoid taking steroids. I've been making ginger and turmeric tea with black pepper and honey and I think it's helping with the pain. It's also really nice. Of course it's early days, I've only just been diagnosed even though it all started about ten months ago. Thanks for the advice Eileen.

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    • Posted

      I had 5 years of no pred - it wasn't until I took pred and saw and felt the difference that I realised just how much my life had been changed by PMR. I was almost houseboud - if I couldn't drive there and not wal I couldn't go, or at least I couldn't go without being totally exhausted and in bed for a couple of days. I couldn't do things with my friends and I was permanently bad tempered with the pain when I tried to do anything. 

      But it is your choice.

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