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My experience with methotrexate and the Auto-immune Protocol diet (or the "worse than paleo diet")

Posted , 11 users are following.

FlipDover_Aust
FlipDover_Aust

Hi everyone,

I've been absent from here for a few (!) weeks as I wanted to find out how my new drug regime was working out before making any statement or comment about how it was working out - or not. It's been nearly 12 weeks since I started on methotrexate at the behest of my rheumatologist. Let me state categorically that I did not want to take it and was very resistant. I was however, feeling so poorly I would have run naked through nettles if I thought it would have helped.

It takes about 6 weeks for the methotrexate to actually start kicking in. In the first month however, I cut my pred down from 20mg to 10mg in 5mg increments. That in itself brought about good improvement as it seems the pred was no longer as effective on me as it could have been - prednisone resistance. The brain fog lifted significantly and I could walk again without assistance.

Around the same time I also consulted a naturopath. I am a true skeptic and approached this appointment with great cynicism. I was not disappointed! The woman seemed very unsure of herself and I was not convinced it was not all quackery - but I signed up for a 4 month plan anyway…. and walked away with a fistful of supplements to take and a 6-8 week auto-immune protocol (AIP) diet sheet of what, and what not, to eat. It took me another month, and a LOT of reading, before I fully committed to the new eating plan.

Two weeks later I felt amazing. I’m six weeks in and I feel spectacular!

One could argue it’s the methotrexate fully kicking in, or one could argue that it’s both the methotrexate AND the diet. That’s what I’m going for. There’s absolutely no doubt in my mind that they are both contributing to the state of wellness I have now. I walk without pain. The brain fog has completely gone. I’m no longer depressed. I can go all day without getting tired. I've started losing weight....and DanRower would be proud of me, I am even thinking of exercising again!

Would I recommend methotrexate? Yes. Would I recommend the AIP diet? Unequivocally, YES. There’s a ton of stuff out there to read, but there’s two sites worth looking at: Paleo mom and Autoimmune protocol

I have another couple of weeks before I start re-introducing the eliminated foods but at this stage I'm so happy with the improvement to my health I don't care if/when this happens.

4 likes, 32 replies

32 Replies

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  • Anhaga
    Anhaga FlipDover_Aust

    Posted

    Interesting to see all the responses.  I do agree that diet has a huge part to play in our recovery.  I take great satisfaction in heading to the checkout with a cartful of organic or otherwise healthfully produced foods.  That, and shopping "local" as much as possible gives me the best shot at eating well.  Also avoid prepared foods.  My biggest concession to improving life while on pred, and maybe avoiding a repeat performance by PMR, has been to virtually cut out wheat and drastically reduce all other grains as well as sugar and sugar substitutes of every kind.  As I'm not aware of having any serious food reactions I've elected to not completely eliminate anything.  Have increased intake of ginger tea and ginger and turmeric in cooking, as well as adding a variety of fermented foods to my diet.
    • iellen32
      iellen32 Anhaga

      Posted

      I see we both have the same goal regarding our diet to keep our health in good level.

      I do not have PMR so far, I have GCA instead.

      Let's keep in touch adding new ideas when they come.

      Years ago we lived in Canada for a while - Owen Soubd close to Toronto where my husband was working as a consultant for Good Year.

      xxx

    • iellen32
      iellen32

      Posted

      Please read Owen Sound. Sorry. Thank you
    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      sounds like you pretty much have the 'real food' thing going on!

      I had to do something, my diet was crap. lol

    • EileenH
      EileenH FlipDover_Aust

      Posted

      You asked why I hadn't commented - either I didn't get a notification or I had visitors at the time and I looked and the internet was playing silly fools and I meant to come back to answer.

      I had looked at the AIP and realised it simply isn't practical for me except to do it as just eating meat and fish and almost nothing else! I'm on an anticoagulant that means I can't eat much in the way of dark green veggies because of the vit K1- and given the problems I've had for the last 2 months trying to get my INR (measure of how your blood clots) stable as it is swinging wildly, changing my diet significantly would just make it even worse. Which takes out a lot of the veggie side. I could get organic meat, most of what I eat is grown on the mountains close to home, not organic but grass fed, but organic is prohibitively expensive. Pretty much the only fish I can get is farmed I suspect. And before anyone tells me I can buy this that and the other as frozen or over the internet - no I can't. I don't live in an area where that isn't a real option without it costing even more than organic! 

      I eat next to no gluten or grains anyway, no added sugar and rarely eat legumes. I do eat nuts and seeds and drink wine - could give them up I suppose but they are my pleasures,

      I'm so pleased it has worked for you - both the MTX and the diet.

    • iellen32
      iellen32 EileenH

      Posted

      Talking about wine, could I have now and then a glass of wine, having GCA, being on Pred and on a diet of greens, veggies , fruits, nuts, ginger, no carbs, no sweets, and yes,  fish, chicken, few times red meat?

      Love the Italian Pinot Grigio and used to get those set of small bottles. 

      I must do something, the diet is boring as time goes by....lol

       

    • EileenH
      EileenH iellen32

      Posted

      Why not iellen? I have never been told by my doctors here in Italy I shouldn't drink wine. It depends on the person and their liver function probably which is why sometimes it says to not drink when on pred.

      But as I've said before - if you can't have a glass of wine or beer when on pred I know a lot of people who are in trouble! What I and others have noticed was that our tastes changed - I can no longer drink heavy red wine, for example, and I prefer white wines which have more body or are fruity now but that may just be advancing age ;-)

      There has been a discussion on another forum about diets and sticking to them long term - if too much is forbidden it does become more difficult as time goes on. I don't find my diet boring at present - I find cooking it boring but that is another matter - but if I tried the "worse than paleo" AIP I would have to exclude so much there wouldn't be a lot left! I suppose it becomes easier if you feel much better on a given diet.

      A study was done with RA patients and a very strict vegan diet helped joint pain in half of them - which probably reflects 2 different versions of RA - but they struggled to stick to it when it wasn't provided for them as it was at the start. A university in the north of England has done a study showing you can reverse Type 2 diabetes and lose a lot of weight quickly that then stays off with a 800 calorie diet for a couple of months - but they do it with milkshake supplements to do the calorie counting. To do it any other way would seem desperately hard work. 

    • iellen32
      iellen32

      Posted

      Great! I though Pred and wine didn't agree- lack of information makes our life more difficult than it really it is.

      My diet is not that bad at all and as you say we get used to it.

      Sure I miss a chicken pot pie, love pastries....and a slice of cake....lol

      Enjoy having blueberries and strawberries with a dollop of Greek yogurt as dessert instead.

      The same as for you the white wines are better for me than the red ones.

      Thank you.

      Cheers!

    • iellen32
      iellen32

      Posted

      Please, read ' I thought ' on the 1st line. Sorry.
    • EileenH
      EileenH iellen32

      Posted

      It may not be good if you have any other liver problems - and neither is a lot good. But I haven't crumbled in a heap yet wink
    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      I am not planning on staying on this very restrictive diet forever - it is merely to give my immune system time to recover IF some foods are contributing to my immune response. Given the gut it something like 70% of our immune system it made sense to me.

      I've already started introducing eggs back in - so far with no adverse results.

      Trust me, if I could have a wine I would - but the MXT does NOT play well with alcohol - my liver would probably explode. lol (although I did drink wine on the weekend at my neice's wedding - one has to live occassionally!)

      another neice, who has recently been diagnosed with Lupus, is also trying the AIP with great success. Her symptoms are greatly reduced and she is feeling much better. She 'blew it' on the weekend and has had a major flare of the rash and fatigue, so it's clearly related to her food. There's definitely something setting her off.

    • Anhaga
      Anhaga FlipDover_Aust

      Posted

      Have a look at arthritis research uk where there is an item about gut bacteria and inflammatory arthritis. Research program.
    • iellen32
      iellen32 EileenH

      Posted

      No liver problems but anyway wine just once in a while,... I may have less than a glass once a month as I do with all that's not part of my usual diet.

      It's good to know that sometimes is ok though.

      Thank you, Eileen.

      Cheers!

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