Feeling better: Hi All Thought I would share this with... - NRAS

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Feeling better

kaypiercy profile image
kaypiercy
โ€ข33 Replies

Hi All

Thought I would share this with you, I have put myself on a strict diet which appears to be working my pain levels have reduced dramatically and I now have greater mobility. I have just started Abatacept and am reducing my steroids to zero currently on 2 mg a day, will be free from steroids by end of week hu-rah๐Ÿ˜‹.

I have stopped eating all meats except fish and have stopped all dairy products. I am eating lots of greens, water cress, spinach, mixed Italian greens with rice or couscous, no potatoes and eating lots more fruit, I've just discovered honey as a sweetener which is also great on porridge. All this appears to have made a difference.

Right now I am on Abatacept 120mg injections, being on this for only 3 weeks, have taken 20mg methotrexate for 3 years, Im not sure what this is doing? Right now I am more convinced it's the diet that has made the difference, before, when I have reduced my steroids I have suffered serious joint pain and reduced mobility this usually returned with a vengeance when I get down to 10mg a day

So currently I am experiencing a dramatic difference in my health and wellbeing I am enjoying the getting back to normal feeling. I am swimming every other day and taking long walks, I think the combination of exercise, diet and medication is controlling my RA down to level that feels normal to me๐Ÿ˜Ž.

Long may it last

best wishes

Kay,

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kaypiercy
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33 Replies
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Matilda7 profile image
Matilda7

Well done! You're eating a similar diet to me and I also find it works well.

kaypiercy profile image
kaypiercyโ€ข in reply toMatilda7

Thanks for replying ๐Ÿ˜‹

I have started to add and remove foods to see if it makes a difference I cutout dairy products and felt much better I have reduced my pain control by half now I will remove acid food I did return to dairy for two weeks and the problems returned

kaypiercy profile image
kaypiercyโ€ข in reply to

Hi

Dairy products do seem to be a common problem for us! Great to hear your pain has reduced

Jan31 profile image
Jan31

Brilliant news! I've too gone a dietary route - on the autoimmune Paleo approach which has no grains or dairy, mainly fish but can eat meat. My nutritionalist recommended sweet potato as an alternative to potatoes and with butternut squash it gives a sweet 'hit'. There's loads of recipes on the website paleoleap.com. I only did in in response to being taken off meds because of blood test results and I wanted some 'back up'. They can't put me back on meds yet as the bloods aren't sorted but if things continue to go so well I won't want, or hopefully, need them - but I'm open to doing both if that's what's best. Exercise is a brilliant way of getting movement. Meditation is also a good stress reliever. Long may it last indeed! Hope you continue to feel good ๐Ÿ˜Š

kaypiercy profile image
kaypiercyโ€ข in reply toJan31

Hi

I tried sweet potatoes which I enjoyed but am now sticking to rice and couscous. Hope you get your bloods sorted soon

best wishes

Kay

Jan31 profile image
Jan31

Oh I forgot to mention I also had Vit D and B12 tests and Vit D was low, so I'm now on supplements. I was surprised to learn just how good Vit D is for general health, fatigue etc. The test is free on NHS so may be also worth thinking about. I was lucky my B12 ok but similarly a lack can have really horrible effects. A friend of mine had severe memory loss and fatigue and he was really worried. Turned out to be a Vit B12 deficiency.

MickeyJoints profile image
MickeyJointsโ€ข in reply toJan31

Hi Jan, Me too!

Just started a Paleo diet after seeing a nutritionist who has a reputation of helping RA. It's quiet interesting as I've only eaten white meat for some 10 years and the recommendation is to have red meat once a week. I had bacon last night - wow.

She seems very sensible (that means I've not shocked by anything she's suggesting ;-) ) and balanced in her approach. I too many have supplements should that be appropriate.

As the drugs (HCQ & MTX) are having no effect after 12 (MTX) to 18 months (HCQ) and I'm no where near a good DAS score I'm having to make some self-management decisions.

Spelt bread here I come!

MJ

Jan31 profile image
Jan31โ€ข in reply toMickeyJoints

Sounds good! If you haven't already had a look it might help to get a copy of the Paleo Approach by Sarah Ballantyne. It's a bit dense with science in the first two chapters but it's readable and goes into a lot of detail about adjusting the Paleo approach to autoimmune conditions. I thought mangoes were OK for instance but there's an argument against them - poor mangoes! I love them, but I suppose it's like anything, once the gut is healed it'll be ok to introduce the odd this and that to the diet. Hope it works for you. We're very lucky we've come so far in the treatment of RA but those side effects can be awful!

MickeyJoints profile image
MickeyJointsโ€ข in reply toJan31

Interesting. Mine is a Mediterranean Paleo diet and if you have a Works books shop near you it's a handsome price of ยฃ5 theworks.co.uk/p/healthy-ea... Might have to get your one too!

Agreed, while there can be some foods that are not allowed, a treat now and again is not going to kill you once the condition is managed.

kaypiercy profile image
kaypiercyโ€ข in reply toMickeyJoints

Wow, if it works for you then go for it!

best wishes

Kay

sylvi profile image
sylvi

I am so pleased for you darling.xxxx

kaypiercy profile image
kaypiercyโ€ข in reply tosylvi

Thanks you for your kind reply

best wishes๐ŸŒป

Kay

andyswarbs profile image
andyswarbs

That's the way, ahah, ahah. I like it!

youtube.com/watch?v=q3svW8P...

kaypiercy profile image
kaypiercyโ€ข in reply toandyswarbs

Cool ๐Ÿ˜Ž

hedgehog45 profile image
hedgehog45

That's fantastic and helpful to know what food groups to cut out to help reduce inflammation. I too have cut out certain foods including gluten and sadly, alcohol and that's helping me a lot too. Potatoes, tomatoes and peppers are the worst culprits from what I've read! Hope it continues to help you.

kaypiercy profile image
kaypiercyโ€ข in reply tohedgehog45

Ah alcohol I remember that! hic! โ˜•๏ธ

pah140 profile image
pah140

Great post and wonderful to hear some positive news.

I am about to try a new diet based on the book "The Immune System Recovery Plan" by Susan Blum (blumcenterforhealth.com/the... starting with removing diary, soy, gluten and corn for three weeks to see if any of these are making things worse. I did also look into the Paleo Approach and would be interested to hear how you (and others) get on over time. Has anyone else tried the Immune System Recovery Plan?

Bottom line a healthy diet, good exercise, less stress and plenty of "mindfulness" resting has to be good for everyone with or without RA.

p.s I am also giving up the nightshades even though they are some of my favourites!

Good luck

Paul.

kaypiercy profile image
kaypiercyโ€ข in reply topah140

Thanks for the reply looks like we are on a similar diet I will keep you posted with my progress,

best wishes

Kay

Mandalou profile image
Mandalou

Just to be devils advocate maybe the Abatacept combined with the low dose steroids and regular Mthx are really coming into their own regards the RA.

The diet however, is giving you a focus as it's something you have control over.

I would hazard a guess that three years of Mthx has done a very good job and would be very very careful if you start thinking that it's diet that has brought about all your positive feelings regards your mobility and pain and inflammation.

Having said all of the above I am not in the slightest against independent methods of helping one to feel as good as possible in this difficult old life we trudge through.

I wish you much success, joy and freedom from pain however it comes.

All the best.

Mx

MickeyJoints profile image
MickeyJointsโ€ข in reply toMandalou

Yes, just add to your thoughts - one of the issues I'm aware of is with changing drugs and changing self-controlled life aspects, you can't be sure what's worked!

In my case with MTX, it's not worked (so far) and if I get good effects with diet, can I be sure it's the diet or MTX finally getting to work... only way to be sure would be to stop the MTX, or eat at fast food places, and see what happens... could be a pain-costly way of finding out.

I think one gets to the point where we'll try most options as you want to get rid of the pain and get some movement back!

Keep pushing and seeking!

kaypiercy profile image
kaypiercyโ€ข in reply toMandalou

Your right of course it could be the meds, but likely a combination, we need to keep fit to cope with the nasty side effects of the meds, as well as coping with RA.

Taking meds for RA always reminds me a story of a guy who jumped off the Empire State building and on his way down passing each floor the people in the offices could hear him say "so far so good" so far so good"...๐Ÿ˜sort of feels like that!

Thanks for you're reply Maynalou, I don't think your the devils advocate.

beat wishes ๐ŸŒผ

Kay

Amy_Lee profile image
Amy_Lee

Before I was sick, my meals would be: -

Breakfast - Cheese, yogurt, bread, egg and cereal.

Lunch - Normal rice, vegetables, fish or chicken. Hardly any red meat.

Dinner - A lot of fruits only.

Exercise : 3 to 4 times yoga a week. Hiking almost every week.

I thought it was a very healthy meals and life style. I did/do not smoke or drink too.

However, I was still diagnosed of RA. Was it because of the dairy products? I am not sure really. But when I went to look for the traditional Chinese treatment, the doctor told me that it would be because I took too much of fruits at night, that made my body too cooling hence I fell sick. He told me to just go for one kind of treatment hence I stopped seeing him.

Now, my breakfast has no more dairy products, lunch remain unchanged, dinner I go for noodle or others stuff. Fruit will be taken in the morning or during lunch in moderation. So, nothing should be taken too much but balance.

kaypiercy profile image
kaypiercyโ€ข in reply toAmy_Lee

Has stopping dairy made a difference? I hope so and hope that all is well with you

thanks for you're reply

best wishes

Kay

Amy_Lee profile image
Amy_Leeโ€ข in reply tokaypiercy

I am not sure if it was due to I stopped the dairy hence recovered well? However, I took mtx for about 6 months and I found the pain reduce slowly. I believe without mtx and arava, I would not recover just by stopping the dairy products.

I stopped dairy the moment I was sick and I was told dairy products are bad for our health. I am now in remission and I hope this can be maintained hence I continue stopping the dairy products and doing the exercise dairy.

I've been doing the same but eating home made soup asa main meal. I have fruit with granola, a few nuts and olives, crispbread and then soup. The swelling on my legs has gone down a lot and I'm staring to lose the weight I put on after my last operation. Not being able to walk at all for a few months certainly piles on the pounds.

kaypiercy profile image
kaypiercyโ€ข in reply tostrawberryshortcake

Wow sounds like you are making great recovery and losing weight, my next goal is lose weight! so well done you๐Ÿ‘

best wishes

Kay

baconbeast profile image
baconbeast

I also am on a strict diet but no fish.

Lots of veggies ,fruits ,sweet potatoes and quinoa and especially papayas and pineapples which are anti inflammatory. Feeling so much less pain and much more mobile. I also am not on any meds.

kaypiercy profile image
kaypiercyโ€ข in reply tobaconbeast

Wow sounds like a great diet and pleased to hear that it is working

thank you for replying

best wishes ๐ŸŒป

Kay

Damaged profile image
Damaged

Hi, I have been on a drug free regime since June 27th. I have now added back the Nexium and heart meds ie Bisoprolol and Atorvastatin. I see Internist on the 4th of Oct and Cardiologist Oct 18th.

I have also altered my diet significantly. I do eat red meat at least once every two weeks. I hate fish but have added it at least twice per month. Lots of fruit. I am allergic to milk so do not do dairy. I am also allergic to Naproxen which is in all NSAID's.

I am now anxious to start again. The pain , while, manageable, is often excruciating. If opiates worked I would take them. Also if inflammation gets crazy I will consider Prednisone again. I do feel more confidant in knowing my body now. Although going through this cleanse has been challenging I am so happy I did. Particularly as it gives me the illusion of control lol

I like that the doctors cannot coerce my compliance with meds. I am the only one who decides what goes in my body. I know I can manage without drugs whenever I decide I have had enough. Let me stress here that I LOVE my Rheumatalogist . She is completely supportive.

I stress again, I do not recommend no drugs. I can see via blogs how it has changed lives. I am however, realistic. I have not responded well to four DMARD's and two Biologics. The odds of my responding well to Actemra are not good. It is worth a try but not until other risks are evaluated first. I worry about the damage going on without treatment. Let's hope clearing a path for the new drug will help make it effective. I am running out of options lol Stay strong ๐Ÿ˜˜

kaypiercy profile image
kaypiercy

Thanks for the info I am taking MSM as well as all the rest, I rattle when I walk๐Ÿ˜

kaypiercy profile image
kaypiercy

Your very brave stopping all your meds wow, but I agree its good to take back control and learn and listen to your body. I tried just the diet which left me a lots of pain couldn't walk up stairs or open a jar of marmalade even with one of those devices to help open them, in the end, in so much pain and desperation, I thew it on the floor in anger!๐Ÿ˜ก

Thanks for reply and hope you get much better soon

take care ๐ŸŒป

Kay

Great news!! Glad you're doing well :)

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