Hello grace, sorry to hear of your rise in inflamation. You know there's always discussions regarding better diets and suppliments that could help us or indeed replace preds altogether, but, from what I know, there is simply nothing that can really really help us otherwise it would be available on a prescription.
Turmeric, for example does contain anti inflammatory properties but in the levels, mgs, that are sold at for consumption, play very little part in the overall picture.
I have changed my diet, low carb and I've added various anti inflammatory foods, eg, nuts, oily fish, how much they help I have no idea but eating them at least makes me feel as if I'm making a positive effort to improve my situation.
Grace, we all want to get off the steroids, but we have to accept that with this condition, luckily I only have PMR not GCA, we are in for the long haul. Things will get better, I started on 15 and I'm now down to 8mgs 19 months on da you will reduce too, just don't rush things.
I've never eaten much red meat or indeed any meat and I still developed PMR so cutting them out will probably have no effect on the clearing up of your condition but I'm sure cutting down red meat will overall be better for your health.
You say that you've still not seen a specialist, well who sanctioned the biopsy? Also, has your GP actually referred you to a rheumatologist, if not they need to, so I would definately inquire regarding that.
In relation to the goiter that's developed, I am assuming it is in your neck? In which case see your GP as that could be thyroid related and the sooner that's sorted the better.
Appreciate your reply . Getting an ultra sound next week on the thyroid and I understand some thyroids are related to prendisone treatment . I will keep pushing for a specialist visit .
My Doctor has been great and consults with a specialist as there is none in our city .
Really like this Site !! Thanks for your response .
Hi grace sorry your not having a very good time at the moment . With regards to the duet aspect I can only tell you what I have been doing and it works for me , my ESR was 30 so not mad high in two weeks it was 8!, CRP was almost the same in 2 weeks it was 1. I changed my dirt completely no red meat lots and lots of green leafy veg , I cook all my veg in turmeric and black pepper 3/4 turmeric 1/4 black pepper . The pepper make the turmeric easier to absorb when mixed at this portion . I also take a morning turmeric supplements tablet so basically I'm going mad for the turmeric after a month now I don't even taste the turmeric and it's so cheap . Lots of fruit also variations . The main veg I eat is broccoli (which I grow my own) ,spinach and kale . No potatoes or pasta, (one or 2 sweet potatoes ) . Lots of oily fish, fresh if possible (tinned is never as good ) I also stopped all kinds of margarine , soya spread it real butter but not to much. I'm actually enjoying my food more now than ever . Tapering my Pred from last week 2.5 mg per week touch wood haven't had a withdrawal pain yet into second week taper 😀, it can't all be our luck . Can it . Hope this helps grace it's just my humble experienced. 😀 keep smiling . Oh and I'm exercising every day now .
Thanks for the good info . I will start using the turmeric and pepper right away . Also love curry dishes so will get busy changing my diet to improve my numbers ,
I use Tumeric and vitamin D. I do believe it helps. Make sure you use a supplement that contains black pepper as it enhances the absorption of the Turmeric. My day was painful and don't know why. Seems this illness just is unpredictable that's why is hard to pin down cause and effect. Hang in there. This is a good spot for information and also to vent
Hello Grace, and welcome although I'm sorry to hear you've been diagnosed with TA, and are experiencing a bit of a flare. I hope when you have your blood tests repeated the small increase in dose will have shown an improvement.
Firstly, it is very important before taking any herbal or other over-the-counter preparations to check with your pharmacist for compatibility with Prednisolone.
As far as turmeric is concerned, during my PMR/GCA days I added the dried herb to as many suitable meals as possible as it is well-known for its anti-inflammatory properties. Whilst reducing my intake of red meat (it is known to be pro-inflammatory), I never cut it out, but I did cut out all processed meats, as many refined carbs as possible, and as much sugar as possible, also coffee. I did include as many known anti-inflammatory foods as possible, including beetroot, avocado, garlic and oily fish such as sardines, mackerel, salmon, trout (the latter several times a week).
You should be under the care of a good rheumatologist whilst suffering from TA - no doubt you are being referred regarding the goitre?
As a new sufferer, you will find it very helpful to read Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. It is available on Amazon and from our National Organisation, PMRGCAuk, website pmrgcauk.com. All royalties from the sale of the book are donated to the Charity.
It would be helpful if you could tell us when you were diagnosed?
It took me six months to get down from 60mg to 20 mg and then I experienced a 'flare' and had to go back to 40mg, so your GP is wise to up it.
The only current medication for GCA that will stop you losing either total or partial sight is pred. So do not be in a hurry to reduce.
A Golden Rule is you take any Over The Counter (OTC) medication or even a new prescription always check with the Pharmacists for compatibility with what you are currently taking. Pred already comes with its own side effects and so do other medications and OTC's. Take no chances your body has enough to cope with, without adding other stuff which may be contra-indicated.
There is a publication called 'Living with PMR & GCA' written by patients for patients and this is a quote from another thread on this site.
"Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago. I do hope PMR&GCA North East will be able to make it widely available. Worth whatever it costs."
I was diagnosed the end of March and started out on 50 mg of prendisone . Was down to 20 mg when I decided to tie into a nice juicy steak . Won't make that mistake again .
Off red meat now and lean chicken , turkey and fish for the future .
I will try and acquire the booklet you mentioned . Thanks !
My naturopath has me on turmeric, I'd consult with one before using any supplements. I'm also doing an anti-inflammatory diet, which for me is no wheat/rye/barley or dairy and I know my gut is happier and from what I've read that is a very good thing. I can tell you that I cheated on Wednesday and yesterday was a bad day. Don't know if the cheat had anything to do with it, but I might have to cheat one day next week to find out.
Please be very careful about using supplements of any sort while taking prescription medications - and I'm afraid I wouldn't trust a naturopath to say it was OK. If supplements have any effect then they can also interact with other substances as well as each other.
I was on a pretty much gluten-free diet when my PMR started - I'm allergic to something in the structure of wheat starch - so although I feel better on low carbs it doesn't have much effect on the PMR. What it does do is help avoid the dreaded pred weight gain - and I have lost the 19kg (nearly 40lbs) that I had put on with pred even though I am still taking it. Eating or not eating red meat doesn't make much difference either!
Grace - since you have biopsy-proven GCA you need to learn to love your pred, whatever you feel about it. It has saved your sight, nothing else would have done that, and is protecting you from other longer term effects of vasculitis. It is not all bad.
Grace, I was also diagnosed with GCA in January after several months of doctor after doctor. I also had double vision in one eye, called third nerve palsy. It took three months to the day to clear up. But, due to that, I was referred to a neuro-opthmalogist at Wills Eye Hospital in Philadelphia, PA. Within a couple days, he had me in for the temporal biopsy, which came back positive. Started on 60mg prednisone and am now down to 15mg. Dr. told me I was lucky I had the third nerve palsy and referred to him as patients usually lose their sight before they are referred to him. After diagnosis, I checked the internet for info on GCA and found very good info on the Mayo Clinic. We also ate pretty good, but after diagnosis, I stay mainly on unprocessed foods - fish twice a week, chicken, ground turkey, pork, beef rarely, lot of vegetables and fruit. I do eat potatoes and whole grain or whole wheat pasta. Due to the eating change, I have lost my craving for sugar. I do make sure I take the calcium and D3, exercise at the local hospital gym 2-3 x a week. I was determined I would not gain weight on prednisone as I was very close to my goal weight. I did lose the weight and am maintaining so far. As others have said, prednisone comes with a lot of side effects and I am now seeing some of them start to diminish.
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