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Date: 09.04.2014
From: Julie

Subject: Probiotics

Hi, I have just bought myself some Yakult probiotics to take, thinking that they would do me good, giving me good bacteria or whatever they do.

I thought I would just read up about it and got quite excited that it is used in treatment for inflammation and loads of other things.

BUT I got to last paragraph and it said that it shouldn't be taken by anyone who has a compromised immune system through medication, because of the bacteria it has it will make immune systems work more. Problem is each day I have a probiotic yoghurt of some type, so yet again I find I am doing things to actually make my condition worse.

Is there any end to this stupid disease!!!!!! I am really really sick and fed up of trying to do things to help with this bloody illness but just feel as if I am fighting a losing battle. First it was the oranges, now it the probiotis what next BREAD and BUTTER!!

Sorry everyone, tantrum over, just had to get it out of my system. I will just hope one day some medication will work for me.
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Date: 09.04.2014
From: Colin W

Subject: Re: Probiotics

get some Acidophilus tablets , alot cheaper than yakult , realy think you should push to get one of the biologics to help ,

steriods are great for helping our immune system , my white cell count is normal which sort of stops all my RA drugs working
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Date: 10.04.2014
From: Julie

Subject: Re: Probiotics

thanks Colin, Acidophilus? what does that do, no Im being lazy, I will look it up sorry.

was at rheumy on Tuesday, she squeezed my fingers and hands and asked if it hurt, I said no because it didn't really. She just said well I know and can tell your disease is very very active and the steroids you are taking are masking the pain. My crp at minute is 45 gone up from last month when it was right down to 24. Now if she had asked how I was managing walking because of my ankles that might have been different, but no mention of the pain there.

She is going to talk to the head of their team to discuss next step because what I am taking isn't working (only taken them 12 months to suss that out!!!) she is talking of biologics as next step, I think, don't know which one because they never tell you anything until its been decided!!

Just hope that I am not put in the same position as others and have to decide which one because they all seem to have good and bad reports.

Never mind just another 4 more weeks to wait - again.

I was wondering what other tests they do before going onto biologics, I know they test for TB and hepatitis.

I maybe should get them done before my next appointment to save time and so I don't have to wait for rheumy to arrange them and then have to wait again for the results, that's all we seem to do isn't it wait and see next time.

You mentioned that like myself, you also couldn't get on with injecting yourself mtx, how do you manage to get your biologics done, aren't they all injections?

I did ask rheumy about the new antibiotic therapy that's been talked about on here, she just didn't want to know and cut me off mid speech which I thought was a bit rude. She also poo pooed food causing problems and looked at me as if I was daft when I said I wondered if my having root canal surgery had any link to me getting RA - especially now my tooth is dead.

Gonna stick to reading on here I get more info.
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Date: 10.04.2014
From: Bsk

Subject: Re: Probiotics

Don't you get your blood results the next day?

If it's any help, you have to have an assessment before you start biologics to work out your DAS score and then another one a month later. So it takes a while to get started on them. You'll have to have a chest X-ray as well.
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Date: 10.04.2014
From: Julie

Subject: Re: Probiotics

thanks Bsk, no I have to wait at least 4/5 days before I can get my blood tests back, and then only if g.p. has seen them first. Any bloods that are done at hospital I don't see,(unless rheumy updates my book when I go back) I have asked at g.p's but they say they don't get hospital blood test results - which I know is not correct because I mentioned it at one appointment and they said g.p's can access all tests done.

I noticed for the last two appointments the consultant filled in a picture on my file, of points on your body where I had pain or inflammation, don't know what Das28 score was, just remembered I did ask her Tuesday and that was something else she didn't answer me, she is not my usual one who is really informative and takes time and listens. I have had chest xrays done couple of months ago, and bone scans. Will I have to have another assessment done next time aswell? I suppose its like everything else in the NHS it takes time.

Also noticed consultants don't like you to come out with any suggestions and they don't like forums!!!! Maybe they should read on here lol
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Date: 11.04.2014
From: Sean

Subject: Re: Probiotics

Hi Julie

Next time your rheumatologist poo poos diet - you can let them know of the study published in the Lancet Medical Journal in 1986. The study was done in conjunction with Dept of Rheumatology Epsom District Hospital.

75% of subjects out of 44 improved considerably or entirely on an elimination diet. (Many went on to have immunotherapy and were fully drug free). The link to diet for some people's arthritis is indisputable.

The study was repeated in the US in Chigaco and included chemical sensitivities, mould and dust mites as well as food - it had even better results.

I wasn't part of this study but I did get treated by the same doctor (John Mansfield) that did the study in Epsom.

The same clinic (the Burghwood Clinic) in Surrey is still going strong today and was used at Hemel Hemsted NHS trust for many years under a knowledgeable dietician.

As for poopooing diet - Dr. Mansfield says in his book.

"As with many discoveries in life, is not really making the actual discovery, but is the dissemination and recognition. Are the methods of human communication so inadequate that when a method of curing one if the most crippling diseases to mankind is discovered, used successfully in a large number if patients, written about extensively, AND YET REMAINS UNKNOWN TO MOST OF THE MEDICAL PROFESSION and most patients..."

I feel this same frustration!

Here is a review of his book by an arthritis sufferer.

http://jhackett_ra.tripod.com/books.html
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