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Date: 17.04.2013
From: Sean

Subject: Does the immune system take days off? Why do we get flares?

Have pondered a lot on the posts that I see against my own experiences.

Interested in others views on why -

1) that even without drugs most people have some good / less bad days, bad days and then very bad days.

2) that even with drugs there appears to still be many that suffer bad flares

For me if auto immune is simply the body attacking itself then this doesn't make sense - there have to be other variables at play that are causing the bad days or assisting the good days.

Be great to know your views - what have you been told causes remission / flare episodes?
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Date: 17.04.2013
From: Colin W

Subject: Re: Does the immune system take days off? Why do we get flares?

Sean what is a remission ? in 18 years of RA I have never experiance one but we are all hopeful they will find a drug soon that does this , only thing I read is men dont get RA remission

this is a new drug they have started trails on & will be some years away but it is very hopeful

http://www.kcl.ac.uk/newsevents/news/newsrecords/2013/02-Feb/First-in-human-trial-of-a-new-drug-for-arthritis.aspx
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Date: 17.04.2013
From: rhona

Subject: Re: Does the immune system take days off? Why do we get flares?

Hi Sean,

When i was first diagnosed with r/a around 12 years ago and started sulphasalazine i remember after a couple of months the rheumy nurse said she thought i was in remission but she thought if i stopped the meds it would probably flare up again. This did make me wonder if we could do without the meds during periods of remission. last year my condition got worse than it had ever been while i was on mtx, sulph, plaquenil so whether i would have been any worse without the meds i don't know, although i do think i would probably have had joint damage if i hadn't been taking the meds. I think our bodies do eventually get used to the meds and then they don't work so well. I do feel that having periods of stress do seem to worsten my condition. What i do know is that without having had the rituximab infusions i would still be in a state and i am so grateful to have got it.

I personally would not take the chance and stop my medication, as the whole purpose of it is to stop joint damage.

Do you take any meds or are you using diet to control your condition?
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Date: 17.04.2013
From: Linda

Subject: Re: Does the immune system take days off? Why do we get flares?

When i was first diagnosed, it came and went. Then it came and stayed. As i understand remission, it is when you have no pain or stiffness. You have no symptoms.

My Lupus/RA has been stable for a few years now. I have had some very good days, and some painful ones, but nothing i couldn't handle. No flares but no remission either.

My ambition is to ultimately achieve remission. I'll do whatever it takes.
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Date: 17.04.2013
From: Sean

Subject: Re: Does the immune system take days off? Why do we get flares?

Hi Rhona - I don't take any medication for my arthritis - but do take (and need) regular supplements of Magnesium, Calcium, Manganese, Zinc and Selenium. So these are my drugs.

I think that Gluten free is a commercial fad (some of the foods are junk) that is misunderstood by some people - I have read research where most wheat intolerant people were 60% likely to react to Corn. So when a great deal of "substitute" gluten free food is made from - Corn then some people on these diets don't feel better.

I had a bad flare period about a year ago - especially with my ribs and lower back. - this was stress related too! Although too much sugar with Easter chocs didn't help.

For me it is intestinal permeability that is key to arthritis and why I won't take any drugs that effect my gut - the less klebsiella bacteria that "leak" through the better. I have also tried to forego headache pills to keep my gut as healthy as possible. Pity I can't give up the wine though!

I found a few interesting articles on stress and on intestinal permeability - if anyone is interested in this sort of thing.

http://m.ajpgi.physiology.org/content/280/1/G7.short

http://thefooddoc.com/leaky_gut

The intestinal lining cells, called enterocytes in small intestine (a type of epithelial cell) are shoulder to shoulder next to each other. They are actually joined to each other by proteins that form a type actively moving scaffolding or R bar that can move opening the space between the cells to selectively allow particles and fluid through into the body. This tight junction area is called the zonula occludens (occlusion zone). Though it is normally barrier to various proteins including those derived from foods, bacteria and yeast, sometimes the barrier abnormally opens allowing potentially dangerous proteins access into the gut wall and direct contact with immune system cells. Normally, signals open up the spaces between the cells, the paracellular space, as part of normal digestion

Some medications, such as ibuprofen can increase intestinal permeability - and gliadin (wheat gluten) invokes an increase even if you are not celiac or intolerant.

My own disease AS gets a specific mention in this excellent paper - but relates to all autoimmune

http://www.celiaccenter.org/documents/publications/Leaky%20gut%20and%20autoimmune%20diseases,%20Clinical%20Reviews%20in%20Allergy%20%26%20Immunology,%20November%202011.pdf
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Date: 17.04.2013
From: s

Subject: Re: Does the immune system take days off? Why do we get flares?

Reeeaaaallly
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Date: 18.04.2013
From: marlene

Subject: Re: Does the immune system take days off? Why do we get flares?

Sean if what you are reading is correct and proven why are they not treating everyone with diet? I.E. Like they do with some forms of diabetis? I am quite a doubting thomas as I have wasted money on so much lotions and potions (figure of speech) I take my treatment from the gp and rhumy team and if I can stay relatively pain free then thats the path I take.
I have to say fair play to you if you don't any meds at all. My sister-in-law has AS and has had a major surgery due to this. I couldn't even begin to guess how you cope without any meds at all!!!
Take care and have a nice day hope you have the lovely sunshine where you live.
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Date: 18.04.2013
From: Linda

Subject: Re: Does the immune system take days off? Why do we get flares?

Marlene. I have osteopenia which is a non disease. I have been offered a drug which has the most horrific side affects, in order to prevent osteoporosis. Talk about a sledgehammer to crack a nut. I've said no. I prefer to use diet and exercise like tai chi. That hasn't stopped them putting pressure on me.

It is wonderful that you are pain free. That is what we all wish for, whichever way we choose to go about it. The less drugs i have to take, the happier i am.
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Date: 18.04.2013
From: Colin W

Subject: Re: Does the immune system take days off? Why do we get flares?

hi Linda , there is a lot of drugs out there with horrendous side effects like dopamine in Parkinson's but if you have it you realy not got much option , threatment for RA varies because we are all different in levels of problems we have & way we have adverse drug reaction

but the simple thing is most people with RA with out the drugs will be crippled up with perament damage , just because these drugs may have side effect dont mean you should not try them , if a drug free treatment works for someone then thats very good but it wont be the same for everyone
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Date: 18.04.2013
From: marlene

Subject: Re: Does the immune system take days off? Why do we get flares?

Hi Linda, I am absolutely not pain free. Have pain every single day. I take tramadol and co-dydramol. This only takes the edge off but at least I can function. I have tried many different courses and nothing worked.
My mother has osteporosis and has never been offered any horrendous drugs with side effects.
She takes supplements for it calcium and vit D and E.
Can I ask what were you offered?
I have OA and there is no cure and no help apart from painkillers but believe me if there was something more I would be first in line.
Good luck with the diet and tai chi and I truly hope it always works for you. Take care xx
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Date: 18.04.2013
From: marlene

Subject: Re: Does the immune system take days off? Why do we get flares?

Hi Linda, I have just been reading up on osteopenia and like my mum it seems to be a pain free condition. Maybe this is why you can do without any drugs. I would ask your gp for a calcium supplement to avoid osteoporosis.
If I am wrong I apologise.
Once again take care
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Date: 18.04.2013
From: Linda

Subject: Re: Does the immune system take days off? Why do we get flares?

I'm taking adcal twice a day on prescription.

Osteoporosis is usually genetic. Everyone over a certain age has osteopenia.

I am not in a high risk group for osteoporosis. It doesn't run in my family, i have never broken a bone or had a fracture, i did not have an early menopause, i am large boned for a female. I have taken high dose steroids, but only for a very short period of time and I can't go out in the sun. You need vitamin D to absorb calcium.

I would have thought adcal which contains calcium and VD3 twice a day would enough. I also take fish oils, magnesium and boron. My GP is very relaxed about me not wanting to take these drugs. He was very happy for me to do tai chi. Not so the Rheumatology team.
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Date: 18.04.2013
From: marlene

Subject: Re: Does the immune system take days off? Why do we get flares?

Hi Linda, so glad you are not high risk for osteoporosis as this can cause problems in its self. My mum fell and broke a hip.
You sound like you are taking all you should be.
I would of thought Tai Chi was a gentle excercise so I can't see why your rhumy team are unhappy. Saying that most rhumy teams only advise swimming.
Take care
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Date: 22.04.2013
From: Linda

Subject: Re: Does the immune system take days off? Why do we get flares?

Thanks Marlene. Tai chi helps balance. It has definately helped mine. Your less likely to fall over.

A few years ago, i fell over a few times, the last time in a disabled bay in car park, would you believe. I broke my glasses and scratched my face. I also fell on my elbow, which hurt for days after. A passerby and my daughter picked me up out the gutter. Fortunately i didn't break anything.

Best bit is, my husband has broken numerous bones playing football in his youth, and more recently broke his toe twice falling down the stairs.
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Date: 22.04.2013
From: marlene

Subject: Re: Does the immune system take days off? Why do we get flares?

Hi Linda, I have had falls also it makes me feel stupid, but grateful all in one piece after. Oh and yes it hurts LOL. Your hubby doesn't sound too lucky Bless!!!
Keep up the tai chi X
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Date: 22.04.2013
From: Colin W

Subject: Re: Does the immune system take days off? Why do we get flares?

hi Linda , got no idea what any of your doctors would have against Tai chi , realy any self help must be good & anything that helps thats not drug related like meditation etc.
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