Date: 10.04.2012
From: Sean
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Subject: Self Help / Diet?
Hi All! I am new to this forum and am curious to know how many people have tried to tackle their arthritis with a diet change? What did you try, how strict were you? - what were your experiences?
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Date: 11.04.2012
From: Em
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Subject: Re: Self Help / Diet?
Hi Sean, I haven't, but a friend cut dairy milk and went on to soya, she reckons it helps her.
She also went veggie for about 10 years and then started eating meat again....don't think that made any difference. Em
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Date: 11.04.2012
From: marlene
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Subject: Re: Self Help / Diet?
Hi Sean I suffer with OA and at the age of 60yrs have tried everything diet excercise meds nothing changes except for as the years go by so my pain gets worse. I just believe you have to use mind over matter say i don't mind and it doesn't matter life is for living and i will live the best I can. What i can't do to-day will get done another day!!! Take Care and keep smiling
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Date: 11.04.2012
From: davina
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Subject: Re: Self Help / Diet?
hi sean i have tryed cutting out wheat and it did nothing also for me the meds are not working but it can work for others so if you want to try don't let us change your mind, everybody is different what works for 1 doesn't someone else. x
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Date: 12.04.2012
From: Tom H
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Subject: Re: Self Help / Diet?
Hi, I swithched to Soya for 4 months and it did nothing. I have however felt a benefit I think from eating more fish, cutting out sugar, eating nuts instead of chocolate etc.
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Date: 17.04.2012
From: Deborah
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Subject: Re: Self Help / Diet?
Hi Sean,
I have been thinking a lot about what you have said about how you manage your condition. I have been researching your form of arthritis AS and have noticed it is inflammatory and although only effects certain joint's (it does not affect all the joint's) it is still a very painful condition. As you know I have PA and am affected in all my joints but was doing a lot of thinking I know diet does not make a difference, but some of the other treatment's you have been trying seem to have made a lot of difference to your condition. I would be very interested in what you take and what effect it has had on you? as I have to stop my mtx today (I have really large mouth sore's) just to see if it is that which is causing them and to be honest I have come to the end of my tether as if I have to come off it I will have to change to something else and when I was talking to the doctor yesterday she did not seem to be too keen on bio logics and from what I have read on them they don't sound too appealing. There must be some other way to treat these illness's I Know at the start you must use these drug's to keep you from becoming too crippled but when you have had it the same length of time I have and have tried all these drug's and to be honest still don't feel that well as there are not working, what I have got to lose from trying other method's. So would appreciate your imput Deborah.
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Date: 17.04.2012
From: Linda
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Subject: Re: Self Help / Diet?
I cut out gluten. It has not done much for my aches and pains, but my IBS has cleared up and i have found it easier to keep my weight down.
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Date: 19.04.2012
From: Chris
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Subject: Re: Self Help / Diet?
Hi Sean and everyone, I also have PA, had my 1st attack about 20 years ago now.
I've been reading several forums and been doing bits of research on diet sporadically over the last few months. I'm trying to build up to doing a diet/lifestyle change, but i must admit to feeling a bit overwhelmed by it all. From the extensive anecdotal research, it seems that different people have different triggers, and some have no triggers at all in their diet.
Also from those that have found their perfect diet, it seems if they stray from it even a small amount they're back to square one. Reading peoples list of foods to avoid usually reads like the list of my favourite foods! I'm really not sure how to start. Oh i'll add my medication, just in case anyone is interested...
ustekinumab (stelara)
arcoxia
pregabalin @Deborah if your coming off the Mtx you could try pushing your specialist for a biologic such as stelara. They have incredible results for most people.
Best of luck.
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Date: 19.04.2012
From: Sean
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Subject: Re: Self Help / Diet?
Hi ChrisÊ
If you have a food trigger then you can find it by eliminating the common triggers first - you've probably seen these mentioned a lot -
- Wheat and other grains
- the above includes all related beverages beer / whisky etc
- Milk and cream and cheese if possible
- all pills and supplements that have these (i am currently having a bad flare in my ribs from 3 days of taking a supplement that contained wheatgerm)
- Refined sugar
I'm not back to the start with this flareup as I know what caused it and I will be strict until it subsides.
I think this is fairly generic advice offered by dietary healing practitioners. My staples areÊ
- strictly wheat free Oatcakes (unless I'm flaring)
- potatoesÊ
- Rice (so I have curries!)
- Rice flour for thickening and baking
- eggsÊ
- Oatly milkÊ
- I can tolerate some cheese but milk gives me eczema and blepharitisÊ - because I can't drink beers I developed a taste for and wine Beyond that it gets hard- as I think I still react to something that I have not found yet - im hoping its not grain fed chicken :-) I'm not sufferring enough to try the full Paleo Diet that others seem to have great success on - so that is another option. I think Suz mentioned it on another thread.Ê
I did do a very strict elimination diet a long time ago and this is another approach that they try - where you start with a bunch of basic foods that you dont currently eat often with the theory that you will start to feel better - then gradually introduce new foods until you find one that makes you feel bad.Ê A few areas to search on google - SCD diet (the lady that formulated this diet died a few years ago - but her story is fascinating about how she helped her daughter - think it was Elaine Goterschall)
- Dogtorj.com - his studies and advice seem more genuine than a lot of the stuff out there and his story is worth reading tooÊ
- Milksucks (my son and daughter do not "drink" milk - there is more absorbable calcium in green veggies) and there is interesting research as to why Japan virtually has no hip fractures in it's elderly Hi Deborah - I still take the main supps suggested 15 years ago - magnesium, calcium, manganese, zinc, selenium - I don't know if they will work without a diet change - but i once gave away a pot of my magnesium/calcium supp to my wifes cousin in Vermont who had RA and it helped his back massively. Re reading this I hope I havent added to your confusion. Ê Best wishes SeanÊ
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Date: 19.04.2012
From: Deborah
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Subject: Re: Self Help / Diet?
Hi Sean,
Thankyou for your reply, no you have not you have been very helpful over the yrs I have noticed that I too cannot tolerate wheat,full/half cream milk,battery eggs,anything fried,can't stand processed stuff, fruit and lot's of thing's that I am still finding out about. You were mentioning grain fed chickens I find I cannot tolerate them but maybe different for you. I can tolerate,
free range eggs,brown bread,all veg,no fat milk,
turkey/chicken/roast meat/fish/ and find a good bodied french red as they are milder not any other and diffinately not white wine.But that's about it so have been pretty good over the yrs. I have been took off mtx and it will be a few weeks before I am sorted with something else so decided today that I need something to keep me going so have started devil's claw,omega 3,glucose tabs so hope they will help me if they do I am staying on them as I am so fed up with these horrible drug's I am taking. hope you will feel better shortly with your flare-up and thank,s for all your help. look after yourself and take care Deborah.
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Date: 20.04.2012
From: Chris
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Subject: Re: Self Help / Diet?
Thanks for your advice Sean. My gut tells me to go the 'whole hog' and do the strict elimination diet. I'd prefer not to mess about tinkering for ages. Best of luck Deborah, has stopping the Mtx helped? Chris
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Date: 20.04.2012
From: Sean
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Subject: Re: Self Help / Diet?
Hi Chris
Your being very brave to try the full elimination - please keep us informed of your progress. I've read lots of research says that its not only food - so until the gut heals you might still get inflammation from bacteria and their associated exotoxin in the gut that you might have also developed antibodies to. The theory is that these bacteria will lessen as the diet progresses and that they change too - because the starches they are being fed will be different.
The very best of luck!
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Date: 20.04.2012
From: Deborah
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Subject: Re: Self Help / Diet?
Hi chris,
Sorry I did not see your earlier post ,thankyou so much for the advice,I will certainly be asking the rhummy for this and try it. Hope you don't mind me asking but you have pa just wondered were you are affected what joints etc? Coming off mtx my pain's are more noticeable and burning quite a lot also had flu like systom's today had to go to bed for a couple of hour's but there are a lot of plus's for instance not so foggy headed woke up this morning and felt like a human being for the first time in ten yrs and the pain's have eased through the day so feel pretty well. To be honest think I would probably have these sytom's anyway as the weather is so up and down but also think that my immune system is still weak and will notice the real change in a few week's time but so far nothing out of the ordinary for me anyway. I know I am finished with mtx as it has run it's course with me so upward and onward as they say. Oh yes mean't to tell you that I am on arcoxia as well still taking those. please let me know what you discovered and how you are getting on. @sean how are you today? Hope you are feeling better.Take care both of you. Deborah.
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Date: 20.04.2012
From: Chris
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Subject: Re: Self Help / Diet?
I think i might be able to manage the diet for 12 weeks, hopefully that would be enough time to show whether it is worth pursuing.
I'm going to need alot of luck to stick to it! Great that you feel human today Deborah!
Not sure where to start with my history, but i got my first set of 'fat' toes in my late teens, 38 now. I've pretty much done all the treatments available, just ending the last (i think) biologic now. They have been in general excellent, but have only been effective for 9 months or so.
Anyhow my main joints effected are my feet and hands, altho i've recently developed fibromyalgic type symptoms - sore muscles, this is pretty systemic. It's worse at the end of the injection cycle (i inject every 12 weeks). The arcoxia has been excellent, but my fingers are slowly twisting. Oh while i think of it, my rhuemy told me i should take something to protect my stomach as i'm on long term arcoxia, a PPI, havn't spoken to my GP yet tho, are you taking anything for this? I also need to sleep in the afternoons, it does alot to help me. Altho i resist doing it! During my 'worst' phases i should sleep for 12 hours a day. I find sleeping in the day 'resets' my pain levels. I feel that i've come to the end of the usefulness of the biologic that i'm on, and i'm being referred up to London. I think that i'm gonna come off it and go back onto the Mtx, which i'm not looking forward to. It's been along time since i;ve taken it, but i remember it making me feel really grotty. Actually i remember coming off the Mtx, i was in a pretty bad way both mentally and physically at the time. The specialist told me about a new drug and how he was pushing the PCT to get me on it (i had to jump thru certain NICE guidlines to get on it). Anyhow eventually i got on it, it coincided with me doing a mindfullness course. Within a couple of weeks i was running up the south downs 3 times a week! Completely pain free, and my energy levels shot through the roof. I really hope the same can happen for you. All the best,
Chris
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Date: 20.04.2012
From: Colin W
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Subject: Re: Self Help / Diet?
Deborah , how much folic acid were you taking , must doctors dont like give high does of it because it may make Mtx less effective , I am on 25mg Mtx now with 6 * 5mg folic acid a week , if your not ask them , it will help most Mtx side effects
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Date: 20.04.2012
From: Deborah
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Subject: Re: Self Help / Diet?
Hi chris,
Thankyou is it good to feel human again. yes I was thinking that maybe the bio logic's would only work for a while as I was told by a rhumatologist that they were not as effective with pa as with ra and other inflammatory type's of arthritis. So am quite reluctant to try them as I don't fancy the idea off having to go through a lot of side effect's only to find that they don't work or work a short time and then have to change again.
i have been through all this before with inflammatory drug's they work a while then stop I know the body get's used to drug's it is a natural process, but it is unbelievable just how quick the body does get used to them.
I have pa in all my joint's and in the bone's in my head plus jaw bone's the rhummy think's I have had it since 10yrs old. Since I started the mtx about 8or 9 yrs ago it has been great up to the 20mg dose although alway's been foggy headed in the morning. It stopped my joint's from getting twisted and still had a lot of pain and found it difficult to walk but generally good, but since i went up to the 25mg I felt really sick for about 4 day's a week then changed to the injection but found that it is not as good anyway fed up giving myself that then being sick really sick for maybe 2 day's after and then monday came and felt like i was really in need of something and fed up being so tired all the time plus my eye's are alway's black/yellow begining to look like dracula's bride. I to do not like to sleep in the afternoon but sometime's your eye's just won't stay open and you know if you get to really rest even for a couple of hour's it can make such a difference to your day so have just had to accept that if I rest now it get's that tireness over with plus have found that if you if you feel a flare up coming on the best thing to do is go to bed even for a whole day and night as it stop's it getting a lot worse.Also find to that I can sleep for hour's get up then sleep all night it just goes to show how much this disease effect's you. Do you think they will put you mtx again when you go up to london? Hope not but I suppose if you can get a little relief it will be worth it.
i too have been jumping through a few hoop's hope that my rhummy will put me on something and hope I too can run a bit the last time I tried to run across a road (don't laugh) but my ankle went funny it felt like it been pulled out of joint and when I put my weight on it again oh the pain of course nearly caused an accident as the car's had to slow down as had to hobble across the remaining part of the road as it happened just as i was crossing have not attempted that since.But it would be great if I could.
Oh yes chris the doctor put me on omeprazole 20 mg cap's for my stomach have been on them a long time and you should be on something to protect your stomach.
Good luck with the diet and really do hope you can eliminate the product's which do most harm it is bound to help a bit.Take care Deborah.
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Date: 20.04.2012
From: Deborah
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Subject: Re: Self Help / Diet?
Hi colin w,
Thankyou colin I have been on 6 tab's a week 400mg except the day of my jab and have doubled them up for the previous 2 week's but no change still mouth sore's, but have had blood test's as the doctor think's I still have a lack of folic acid.Still waiting on the blood result's. Notice you too have been on 25mg of mtx,hope you dont mind me asking but how long have you been on it? and how have you found it work's for you? thankyou for your reply and hope you are well Deborah.
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Date: 20.04.2012
From: Colin W
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Subject: Re: Self Help / Diet?
Deborah , the over the counter 400 micrograms are very low does & you need 12 tablets to = the 5mg on prescription , thats why your having problems , talk to your doctor btw been on methotraxate tablets for 14 years , dont get on with the injections , dont mind the pens like in enbrel ,
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Date: 21.04.2012
From: Deborah
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Subject: Re: Self Help / Diet?
Hi colin w,
Is it any wonder I am having these problem's, will contact my doc this week. That's a long time to be on mtx are you still on it or have you been on some of the bio logic's if so how have they worked for you? Thanks Deborah.
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Date: 21.04.2012
From: Colin W
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Subject: Re: Self Help / Diet?
Hi Deborah , not on enbrel now , had bad reaction to it but did very well , maybe sometime go on another one , gl with your gp
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Date: 22.04.2012
From: Deborah
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Subject: Re: Self Help / Diet?
Hi colin w,
I will thankyou Deborah.
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Date: 24.04.2012
From: Sean
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Subject: Re: Self Help / Diet?
Hi All I came across this forum with worldwide members following a diet for AS - lots of inspiration here! Some posters have RA too... http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=205870&page=7 One poster said that at one point he was paying $25k a year for medication.
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Date: 24.04.2012
From: Chris
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Subject: Re: Self Help / Diet?
Wow, great thread. Thanks Sean.
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