Abatacept vs diet & minerals: Does anyone subscribe to... - NRAS

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Abatacept vs diet & minerals

LeeJayne profile image
16 Replies

Does anyone subscribe to the "leaky gut" theory of autoimmune disease such as RA? I'm trying to deal with my newly diagnosed "super-early" RA with diet and minerals but have been asked to try Abatacept on early prevention trial - one year of weekly injections. Does anyone have experience of trying alternative treatments such as leaky gut diet and mineral supplementation? Also of experiences with Abatacept?

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LeeJayne profile image
LeeJayne
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16 Replies
Helzbells profile image
Helzbells

I do but can I ask. Are you sero-positive. I was diagnosed super early but my consultant says I don't qualify for this trial and won't put me through

Helzbells profile image
Helzbells in reply to Helzbells

Sorry typo should have said I haven't tried alternatives with any success

LeeJayne profile image
LeeJayne in reply to Helzbells

I don't know what sero-positive means! Sorry for my ignorance. I know I have rheumatoid antigens: is that what you mean?

Kai-- profile image
Kai-- in reply to LeeJayne

Supplementally (if this helps at all), LeeJayne, Seropositive ➕ and Seronegative ➖ explanations at: healthunlocked.com/nras/pos... (scroll downward) 🙏 🍀 🌺 🌞

Helzbells profile image
Helzbells

Hi yes it is x

helixhelix profile image
helixhelix

As far as I'm aware many of the diet advocates do also suggest that you can continue with your drugs while you make changes, it's not necessarily either/or.

If you are super-early then perhaps more of a chance for you that lifestyle changes will make a difference (it's not just diet by the way...) I tried shortly after being diagnosed and it made no difference to my RA, so I have continued on drugs. However, I still keep up many of the changes as I think they have helped me more generally, and have helped me tolerate the drugs with no/few side effects.

cheshcat profile image
cheshcat

I tried everything (everything!) from when I got the "flu" one day until diagnosis. Nothing helped or stopped RA marching on. I am diagnosed now and on luflunomide. I am sero+. I am seeing a new alternative nutritionist and actually feel much more confident in the diet/lifestyle changes helping now that I have medications and a rheumatologist. I look at it as helping the medications do their work, so they don't have to work as hard to keep it under control. Not that it is yet, it's still active.

My Mom has had RA for 30 years. Start meds as soon as they are offered, this will greatly benefit the rest of your life. You will have to live with the damage done by not trying to get the active disease under control.

dryan profile image
dryan in reply to cheshcat

Totally agree, approaching immune problems via the "gut" is good for sure. I have been treated by good nutritionists as well as following a "wheat-free" diet. Its all good and worth the effort.

Roscoe profile image
Roscoe

I have had success with dietary and lifestyle changes and have come off medication completely. If you would like to message me i am happy to talk to you.

LeeJayne profile image
LeeJayne in reply to Roscoe

Thank you. Yes please. I would like to hear from you about this. I am in such a dilemma as I've spent a lifetime trying to find relief from chronic migraine. I have been following a mineral supplement and dietary protocol for eight months and my migraine attacks have reduced from 12-15 per month to 2 per month. I have worked so hard to get healthy and am devastated that I might have to take immune suppressing drugs which might have side effects such as increasing migraines/headaches and infections.

TansyR profile image
TansyR in reply to Roscoe

I am very interested in what changes you made that you are med free!

I was getting good results from lysine and boron. But had to stop because of intolerance of to much boron. Also am gluten free. Look forward to hearing from you

Tansyr

LeeJayne profile image
LeeJayne in reply to TansyR

I did 3 months yeast elimination diet to heal the gut and have been using ReMag (magnesium) and other minerals to re-balance my body using Dr Carolyn Dean's protocol (they are her products) - see "The Magnesium Miracle" new edition. I started on this to deal with chronic migraine and it worked (only thing that has ever improved this). Diet is fish and vegetarian; gluten-free; minimal dairy but I do have probiotic yogurt and kefir; no sugar apart from just started using 2tbsp organic cider vinegar "with the mother" mixed with small tsp of raw honey in warm water before each meal. I think the "alkaline diet" approach is beneficial. It's finding a balance of doing this seriously without becoming obsessed with it. I also lost 3.5 stones since being on the protocol starting in March this year. Now 10stone - ideal weight, which has got to help all-round health.

Mistydawn profile image
Mistydawn

Hi, I was diagnosed pretty early and started in on Abatacept some two years later. I do believe in the leaky gut theory and do maintain a gluten, dairy and sugar free lifestyle to a large extent. Abatacept worked really quickly for me, within weeks and I was on weekly Abatacept for about three months when I my vertigenous migraine symptoms returned so stopped taking the Abatacept. I then restarted this medication in the middle of August on a fortnightly basis as my RA was in remission and I felt a lower dose may help prevent migraines as well as keep my RA symptoms at bay. Necaybof the migraines, I was offered another drug but have decided to continue with Abatacept once every three weeks and see how I get on. Please note all the changes I have made re: use of Abatacept have been made following discussion and agreement with my RA consultant. I am very small built so felt that the dose of Abatacept may have been too high for my small frame.

Good luck

oldtimer profile image
oldtimer

I am always suspicious of anything that you have to 'believe in'. That suggests that there is insufficient evidence for it to be proved beyond reasonable doubt.

I am very happy for the people who are currently in remission and not needing any treatment following dietary modification. But having been told for a period of my life that I was in remission and then having major life threatening problems after seven years without DMARDs, I am wary that it might not last for them either.

If early treatment can modify or reduce the damage that occurs during the time of non-treatment that I would be all for it.

Mistydawn profile image
Mistydawn in reply to oldtimer

Hi Oldtimer, I do not agree with coming off RA meds completely! Only tapering off and seeing how I get on. It’s all trial and error...

Yogi-bear123 profile image
Yogi-bear123

Lucky u to be offered a biologic early! There is thought with some leading professors that if u can get into very early remission(months of diagnosis) that u could possibly come off treatment. It took me 3 years to get on a biologic and although better still struggling... diet helps to I think but once this disease has got going I believe needs something stronger to kick it into touch!! Good luck

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