Hello to everyone out there. I just had to share this with you all. I am reducing the Pred and have never been able to get below 5mgs a day but for the last month have been taking 5mgs and 4mgs every other day and am feeling probably the best (painwise) that I have for the last 2 years.
I have been having acupuncture and also taking 9000mgs of fish oils and 9000mgs of flaxseed oil per day along with 3 vitamin b complex. I also have a glass of magnesium chloride and a glass of bicarbonate of soda mixed with lemon juice and 5 drops of iodine. Anyway has anyone else heard of this before? Would love your comments.
No I have never ever heard of that combination of supplements !! Where did you get the idea from and what is the theory bedind it I can understand that accupuncture but not the other things I take Cod Liver Oil Omega 3 Will be very interested to hear more
I would say that it is the omega-3 supplements that are contributing to your success.
Fats form the basic building blocks of the immune system. A diet high in omega-6 fats (such as sunflower oil) results in chemicals which promote the inflammatory response, whereas a diet high in omega-3 fats (such as fish oil and flax seed oil) results in chemicals which suppress the inflammatory response. Olive oil is neutral as far as the immune response is concerned.
I get my information from a book called \"Overcoming Multiple Sclerosis\" which is another autoimmune condition. The doctor (himself a sufferer of MS) who wrote it does recommend very high doses of fish oil and other omega-3 supplements and in fact - you do seem to be taking high doses. I don't know what part the Vitamin B, the Magnesium chloride and the Bicarbonate of soda would play.
Anyway - Well done for getting to 4.5 mg - I myself am at the exact same level in the reduction programme - though I'm a bit stiff in the mornings (but it wears off as the day progresses).
When I read your posting I immediately took a couple more fish oil tablets and I may have sardines for lunch!
Good luck - hope you have continued success with your reduction programme.
Cheers - Hilary
PS If you google \"Overcoming Multiple sclerosis\" you can find lots of info on the website.
So glad to hear that you are finally managing to get below that seemingly difficult 5mg dose and thank you for such an interesting post. I agree with Purplecat here as to the benefits of Omega 3 - I've always been a devotee of fish oil believing it has positively reduced my pain levels but mainly in the form of several weekly helpings of oily fish. I did once hear of a couple of elderly sisters who recovered from PMR without steroids by taking Evening Primrose Oil and following a diet where they separated carbs from protein, but I believe someone has also posted saying that they were taking Evening Primrose Oil before their diagnosis! So, I guess, it's a fine balancing act for all our different bodies!
What about Vit D - have you been tested for that?
Do come back and tell us more, particularly about how the Vit B and Magnesium works and meanwhile all best wishes for a continuing smooth journey to recover.
Hello ladies and thanks for your replies. I have been going to this practitioner for a few years now as I am a great believer in alternative medicine. According to him many people are deficient in magnesium and don't know it and this can cause many horrible things to happen to the body. I do urge you all to read about it on the internet, it really is interesting. As he said to me whilst we are taking artificial steroids our body will never release our own natural steroid, so what he is doing is trying to kick my adrenal gland and thyroid gland into working. The bicarb, lemon juice drink is to neutralise the acid as our bodies should be alkaline not acid. The iodine stimulates the thyroid. Don't know if this makes sense to you but please read up on the internet as it does makes sense.
Apart from that have any of you got thinning hair as I have and what can we do about it. I shall have to buy a wig soon! :roll:
That is very interestring and I have got rid of my night sweats by useing Agius Castus ( As they worked so well for my horse !!) and always have an open mind for alternative and herbal medicine so when I have some time I will check
Sorry no ideas for the hair I dont have a problem with mine
I was losing hair badly a few months ago - I think it has slowed now (am reducing gradually from 2.5mg at mo) - it seems to keep growing though but went definitely thinner - now is coming back a different texture and curly/frizzy! Not sure if it was the Alendronic Acid or Prednisolone or Omeprazole. I am no longer on the AA as it had bad effects.
Purple Cat Didn't know that sunfower oil triggered inflammation. Will stop putting it in my bread recipe and use olive oil instead as I do for all other cooking or maybe, better still, substitute with Flax.
I lost hair in my first bout of PMR when on 30mgs. And, yes, it did grow back a different texture... a bit like the Queen's but not so tidy!
I guess it's the Pred as I'm not taking any of the others you mention and only ever took 6 doses of AA before bad reaction.
Still persevering with 4 but not enjoying it much. This does seem to be a difficult level for so many of us
Yes - around 4 mg seems difficult - Having been OK on 5 mg, I reduced gradually to 4.5 mg and started getting a lot of stiffness and some pain in upper arms and hips. It wore off as the day progressed but was back again next morning. Anyway - as I was about to go on a bit of a walking holiday in the Lake District last week - I decided to go back to 6 mg. This was successful and I was able to walk up and down hills and enjoy it. Now I have started reducing again - trying 5.5 mg this week and hopefully 5 mg the following week. I might then stop there for a while until I see my rheumatologist at the end of this month.
:cry: Well ladies so much for my success story! That was until last week when I decreased a bit more taking 5mgs Pred on Mon, Wed and Fri and 4mgs for the rest of the week. All the pain started to come back and I felt so fatigued and sad. We had to go and meet my husband's best friend from New Zealand in London and I just don't know how I managed it, it was one big struggle. I was so disappointed! Does anyone ever get off these things? So I have gone back to 5mgs and see how I get on.
Thanks for all of you out there that care and understand.
Yes I thought I was doing really well and had got to 2 by doing it very slowly half a mg over 6 weeks !! then throat infection and have been on 4mg for a month and am now going to do 3.5 over 6 weeks probably On the bright side last year I ended going from 4mg back to 15mg
There is someone on here ( possibly Mrs K ) who only does her reductions when as she says she can clear the decks of other things I would sit at 5mg for a month now if I was you take it easy and try again It is very frustrating but last year taught me a lesson not to rush things as I really felt washed out with my blip then for at least 2 months
With my first bout of PMR I sailed through the reductions with no problems and was at a maintenace dose of 1mg after a year and no problems at all so this bout has been a steep learning curve for me even though Ive had it before !
Yes its me and I am busy' clearing the decks' for next week.
Had a bit of a stressful time with Cousin who lives with me and is 81. Ended up in A&E and then surgical day ward. Large Blind Cyst which had become infected and burst all over the place. District Nurse everyday for next three weeks.
So on hold this week. But amazingly I did not collapse with exhaustion till Sunday, so we both had a very very lazy day and after much laughter decided to crack open a bottle and then asked the local pub to drop us a couple of plates of Sunday dinner. We just love our local pub.
So we ate the works and then had enough meat left over for a sarnie at 8pm. Beautiful day.
So sorry you are having a bit of a blip but it seems that for many people 5mg is a bit of a sticking point. When I had a flare trying to get down below 5mgs, the rheumy increased my dose to 10mg for a couple of weeks then 7.5 and 5 but he wanted me to remain on 5 for about 7 months. I baulked at this and we compromised and did 4-5 months! This seemed to really get the inflammation under control and I was then able to successfully reduce to my present 0.5mg following a painfully slow reduction programme.
You have done incredibly well to reach the low dose of 5mgs after such a short time on steroids so although it's very frustrating when your body doesn't do what you want it to, hang on in there - perhaps when you feel more comfortable you can try again but just do one day at the reduced dose in the first week and then again on the 6th day in the second week and so on.
Mrs K - I'm so sorry to hear about your cousin and please pass on my get well wishes. That local pub of your's sound fantastic - we could all do with one of those around the corner! :burger:
With my first bout of PMR I sailed through the reductions with no problems and was at a maintenace dose of 1mg after a year and no problems at all so this bout has been a steep learning curve for me even though Ive had it before !
Have you ever had any sort of explanation for this big difference with your second episode? As I have already said more than once, this has been my experience, too. When I asked my GP he looked at me and said, \"well you ARE ten years older\" but I had the feeling he was not entirely convinced that that was the whole answer and neither am I.
No I havent had an explanation but I hadnt actually asked for one I have only seen my Dr with this bout not a Rheumatologist My Dr is so good that I havent bothered She always seems quite knowledgeable on PMR but I will ask her when I see her if she has known other patients to have it twice
Until I discovered you on this site I was the only one !! Ages ago I did find another patient website that had a few people on there who had it twice which was a relief as I felt the odd one out !
Im just hoping it will go one day and it doesent reccur I really didnt feel at the in between PMR bouts time that it was lurking anywhere and I was trying to ignore it but definately felt my old self in
Fingers crossed for us both for it to go away and not come back !!
Mrs. G. I really didnt feel at the in between PMR bouts time that it was lurking anywhere and I was trying to ignore it but definately felt my old self
Moi aussi. When it came back we had decided to move house and it was 2008. NOT the best time. We are still here and contentedly staying put.
Like you, I'm very happy with my GP and can't see what a rheumatologist would have to offer that he does not.
I've had two goes at the quotes but they won't play. I think it's clear enough, though.