Hi I am feeling very low after an unwelcome reaction to a second biologic which is making me feel I do not want to keep trying new drugs because of the disturbing effects they have on me.
Separate to that, I paid to have food allergen testing (as my RA developed on the heels of some digestive problems so I am considering if they are connected) and have just found out I am showing a severe allergic response to eggs and milk. So I wonder if this is part of the reason why my immune system has gone wrong over time. I am wondering about saying I don’t want to continue trying biologics for now and see what cutting out these foods might do in terms of reducing my symptoms. I would still be on Metoject. The biologic was being added as the MTX is not controlling the RA fully, but so far the allergic type response to biologics makes me really reluctant to persist with those.
Has anyone had a similar experience and/or found that removing foods your body reacts to has helped the RA improve/ resolve? I know food is a controversial issue and I am not looking to provoke an angry debate- I just can’t go on like this and am despairing also at complications with the medication route.
Many thanks
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BlightyFiveStar
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Can I ask what type of test you had to identify your food allergies ?
An IgE blood test or a food elimination diet are the most reliable ways of assessing food allergies. The skin prick tests are less reliable, and can give false results in as many as 60% cases. They are particularly unreliable for milk allergies.
If you haven't had an IgE blood test it might be worthwhile asking your GP for one before cutting out foods and coming off drugs ?
(I'm not doing well on benepali, very disappointing)
If you know you are allergic to eggs and milk then there is nothing to loose by cutting them out. Worth a go.
Could you cut out the biologics for now with a guarantee that you can have another go at a later date ? It might be worth explaining your thinking to yiur rheumatologist?
I haven’t had that sort of problem at all. But if I did I think I’d give it a go, if only to give my body a break. If the metoject is holding things back a bit then I would have thought you have time to try a different approach. And finding out whether egg and dairy really affect you would be useful to know.
And maybe if you are allergic and you cut them out, then if you do have to try another med to control the RA it could just help you tolerate it better?
Hopefully you have a good enough relationship with your rheumy for him/her to understand you just want to pause new drugs for the minute while you sort out digestive issues?
Yes, there’s the rub. The rheumatologist laughs at everything I say (even if it’s ‘I am in pain and feel miserable) which does not make for a good relationship. I’ve even said ‘I’m not sure why you’re laughing because for me this is real and it’s really affecting my quality of life ‘ - said this at two appointments! - but he stays the same. I’ve asked for a transfer but heard nothing about whether it will happen. I feel very alone and unsupported in appointments
Sounds like you might be better placed not to put more stress on a fragile relationship. Sound it out, but perhaps if you meet opposition then start process to get a new biologic. That will probably take a little while, and them you could always develop a strategic sore throat/holiday/unexpected need to be away from home so as not to start them.
When's your next appointment? As if that’s a couple of weeks away and you slow process right down then will give you time to see if diet does make any difference to you? How’s it going so far? I know I’d find it hard to quit eggs.
Good idea. My next appointment is on Monday so no time really- then second injection Wednesday unless we agree to stop. I don’t think I want to continue
I got it through a nutritionist and naturopath who is very scientific and thorough in her approach. She books it with the company who make the test (Genova in my case) and I had to arrange and pay for someone to draw the blood and centrifuge it. Testing is not cheap but then nor is having a condition which is disrupting my life and work so I see it as an investment. I can send her contact details if you want
Liz is on holiday at the moment but here’s her website. She’s absolutely lovely and really gets into the detail of what is going on with your body, and how things connect, in a way I’ve found the NHS doesn’t have time or resources to do
Hi, I had my first biologic and was a 100 times worse plus bleeding gums and rash, they sent out a blood test which I done Tuesday, they said if they don't ring me it means the blood test is alright and to go back on the biologic , I have a yucky virus of sorts at the moment too, sore throat and so on , so can't have it at the moment anyway.
but like you feel I don't fancy doing another jab and feeling like I did.
also I done a blood test on food, mine was wheat, eggs, yeast, garlic, beans, and rice and bannas.
some where high to low, wheat being the highest reaction
it made sense to me, I have always had a doggy stomach on wheat
my blood test told you the high reaction have- re introduce every 3 months and low reaction every two weeks
people say you can't rely on these blood test but I am 54 yrs and do know how I feel, so there is something in it I feel
so your not alone, and I know where your coming from
I do eat well and healthy without those things in my diet and I have been adding wheat in every 3 months and every two weeks the other things except a full egg.
how do you get on with your GP? can you talk to them?
Hi Blighty, I had intolerance tests done some years back which showed intolerance to all dairy products. Milk butter cheese eggs etc. I cut them out totally for a period of 18 months. I checked every package and every food, I absolutely didn’t cheat or lapse. It had no effect on my RA at all. Previously I had a bit of a stuffy nose and this cleared but that was it. I also had calcium levels checked before and at the point I stopped. I restarted dairy as my calcium levels had dropped considerably even though I had been eating plenty of other foods rich in calcium. My body seemed to need the calcium in dairy foods.
It’s worth giving a diet without eggs/ dairy a try for a while may be a few months rather than the 18 moths I tried it. It may help you but don’t despair if it doesn’t there are other drugs that you may tolerate better.
My sleep is not good and could be due to the drugs. However it is a compromise I have come to with my body, pain and mobility v sleep.
I’ve developed problems with MTX. A friend who also had problems with it has told me to look into leflunomide. She said it’s the only thing that’s helped her. My doctor is agreeable. But for the moment I want to see what happens now that I’m off of MTX. Doc said it remains in your system for three months. Don’t know what will come next. I’ll post when I do. Wishing you all the best.
I think if you have had a proper diagnosis of egg and milk allergies it can’t hurt to cut them out and see what happens. It might be they are aggravating your RA and the mtx will be able to do its job and keep you controlled if you are no longer eating them. What kind of allergic reaction are you getting from the biologics?
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