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Newly diagnosed with RA - hopeful and happy!

Hello, I’m posting this hoping it can help a few people who are looking for a different approach with RA. I do think it's strange that the NHS in the UK seems to be largely ignoring this, despite amazing results which become more evident each day. There is so much hope and help out there for auto-immune diseases - at least from what I’ve seen and have investigated so far (Dec 2018).

To tell my story, I am 60. I was diagnosed with RA only 10 months ago. I straightaway changed my diet to ‘plant based’. I gave up white refined sugar and lost around 2 stone in weight. My CRP/ESR levels all reduced, and my last two blood tests (in July and October) showed ‘no inflammation’, i.e. my CRP went from 10 down to 1. More importantly I'm fit and well. But even better, I have not taken a single RA drug or medication.

The motivation behind these changes began with the discovery of Clint Paddison on YouTube - initially his Ted Talk - I strongly urge anyone who has not seen it to watch. (Google - Clint Paddison Ted Talk). I have not joined or bought the Paddison programme, as many of the resources are freely available on the internet. Clint Paddison has posted hundreds of informative chats and helpful discussions with RA patients on YouTube. He knows and understands RA inside and out, because he’s suffered the worst of it and now helped hundreds of people too. He introduced me to the teachings and ideas of various highly regarded plant based doctors in the United States, such as John McDougall, Dr Klaper and Dr Popper & others .. they are all worth checking out on YouTube - all these talks are fascinating and illuminating. It is really no hardship to check these things out … I hope this helps.

Happy Christmas to all!

Frances (South-West, UK)

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A big welcome to you!! so happy your having great results

I have been on salads, veg for 3 months, and its done nothing for me

I have lost 3 stone in weight, have lost all confidence in food, scared to eat anything that is said to be hamful, is it helping me, no!

I am not on steroids, try not to take any painkills, have CBD oil

am I getting worse yes

so I wish I could say the same but sadly not, that's why 4 weeks ago I said yes to meds, which I hope will help me

and this is coming from someone who is very anti meds of any form

but I am pleased for you and thanks for sharing

wishing you a fantastic xmas and new year

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Bless you .take care love x

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Interesting to note that CBD OIL does nothing. I've always thought all these things are faddy. However I do believe that putting that good food in your body will help u in the long run. I mean u have lost a lot of weight and that in itself is good for u. I hope the med work for u as the whole saga is so draining. Best of luck and don't give up the good food.

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I wouldn't say CBD oil does nothing, but sometimes its not enough, nothing is when every joint is screaming out in pain, I hope the meds start working,some days I think it is, but its early days, I think its harder with no weight fat on my body as I have no fat cushon , :O) thank you!! ps please excuse spelling

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There are over 100 types of RA as per my Rheumatologist. Certainly diets can help with inflammation, but if you have moderate to severe RA, it is a silent killer, attacking your internal organs, primarily your heart. You will not be cognizant of this...much like high BP. You may have “kindest “ form of RA now, as I did in the early years. However, as your body begins to resist your diet, the painful cytokines will take over. Maybe??? This is an insidious disease!!!

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U said the diet and CBD oil hasn't helped u so to me that means it has done nothing for u. I don't agree about your pain being worse as u have lost weight. Carrying excess weight puts strain on joints.

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when I lay down I feel everything, even sheets, my body is no fat just bone, so it hurts me more,and I feel more fragile, its up to you ,I know how I feel, its my body, but you can have a right to your own thoughts, and I sometimes don't make sense, that's normal for me :O))))

I said quote-I am not on steroids, try not to take any painkills, have CBD oil

meaning I am not on steroids,don't take painkillers unless I can help it, have CBD oil,meaning I have, use CBD oil, in that,where does it say it doesn't work???

my spelling and grammer isn't great, so your have to excuse that in me.

I am saying Diet, am I getting better, no, am I getting worse yes, have I got it in more joints yes

before I had it in fingers and toes-feet and jaw, now elbows, shoulders, and knees,and it feels like neck too, wrists.

hope that makes more sense to what I was trying to say.

merry xmas to you xx

ps I also suffer with fibro, so my pressure points hurt and muscles and it hurts more when they are pressed,I had to change my mattress as I was feeling the springs digging in my body,and it was a new mattress, its because I now have no fat to cushion me

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I'm sorry to read how much u r suffering and also sorry that I did not correctly interpret what u were saying. I take it English is not your first language and I found your post confusing. It's not serious.

I do hope your meds start to work soon and u get the relief u so clearly need.

Hope u have a wonderful Christmas as well.

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bless you thank you, well some of the people I know would say English isn't my first

language :O)))))))))))))))))) as I have my own Language going on :O))))))))))))

I just went to 16 schools as a child many many many years ago :O)))

I am not ashamed of that as

its made me who I am today, and I proud what I have come through that's made me, be me, warts and all :O)) and I am sorry I confused you too, but that's normal for me :O)

anyway no worries and thank you, I am not feeling too bad this evening, having a bit of light relieve me thinks :O)

I am just waiting for the turkey to cook more so I can go to bed, have a full house of grandchildren tomorrow, so will say night night have a great day tomorrow and best wishes xx

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Hello Effs and welcome,

Happy the plant based is working for you. It seemes to do that for a lot of people and then again not for a lot. But as you say you can alway try and see if you are one of the lucky ones. I hope you will. be able to control your disease for a long time with the diet😊Keep us posted. Merry Christmas. Simba

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That is truly wonderful for you, so well done for trying it out.

The diet/lifestyle suject can be very emotive on here. It has been discussed many, many times. And for those for whom it works that is really great. It seems to work best with young'ish sero-negative men, and those who are starting from a base of a poor diet or are overweight - or at least that's what the anecdotal stories on here suggest.

Unfortunately it doesn't work for everyone. There are many on here who have tried diet/lifestyle changes - me included - and while it has really helped overall health it has done precisely nothing to control the RA.

The problem comes that for those for whom it doesn't work it can be maddening when people say things like "there is so much hope and help out there for auto-immune diseases". It's as if you are telling me that I am a fool for taking all these drugs and if only I quit sugar and ate more plants all would be well. Do you really think that I take these drugs for fun? I'm sorry to sound negative and I truly do wish you the best, but please have some sensitivity to others.

What is also becoming evident is that RA is not one things, there are huge variations between people and not just sero-negative/positive but at a more detailed level. And there are things that mimic RA, like post-viral RA so some of the wonderful success stories may not even have been RA in the first place. Eventually I hope all this will be known, and there will be more targeted treatments that work for everyone. But until then we need to respect each others choices.

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Thank you for saying exactly what I was thinking Helixhelix.

Great for all the enthusiasm but tests change even while the disease progresses....

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Thank you helixhelix. No disrespect to Effs, and good luck to you. But you are very lucky and very rare. MOST people don't get benefit from plant based diets, or rip off programs like Paddison. He's just profitting off others misery. If he were genuine, he'd give away his program for free.

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Effs did make it clear she wasn't paying to join his programme - most of his stuff is available for free. Which is not an advert for him! Just factual.

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Yes, Effs was clear about a lot of information being free, but her first post on the forum does read very much like an advert for Paddisons. No offence intended.

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He's a comedian. He works the comedy circuit and the motivational speaking circuit. He's made his money. i bought his program ears ago, he didn't honor his money back guarantee. He's been shown to pay people to post on forums singing his praises. how his program is free etc. That's how he markets his program. Not saying thats the case here, but that's who he is. Nothign but pseudo science and he's not harmless. Still, if people are benefiting from his program, than that's great. But this is what one of the most prominent rheumatologists in the country has to say, and read the comments. He does REAL harm. Just my opinion, but more harm than good in my opinion.

bjchealth.com.au/connected-...

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I'm with you all the way.

Interesting link too.

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I'm saying this with the utmost of respect to the lady who posted such a positive post, but you're so right helixhelix to highlight those points. I've only been on here a short time and the majority of people on here have battled continuously in fighting for alternatives to compliment their medication or otherwise. It must be soul destroying to fight the battle sometimes for years but to no avail! Respect. I know it's been a month, but I wanted to voice!

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I agree helixhelix, the trouble is when your new to RA and the drugs scare you and only your toes hurt, you think there is another answer, and delay drugs that might help you inturn causing more damage, but because your in early stage you don't know enough, don't understand and will try anything

I am sero negative too,I wish I hadn't searched for other help than drugs, because I might not be so bad now? and I would be eating normally, instead this xmas is salad and veg because I am scared of food now.

another thing maybe the diet seems to work at first because its a shock to your system but its not working now, its everywhere-elbows, shoulders, knees fingers, hands,toes

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I know, stuck between rock and hard place! But hopefully for you the combination of diet and drugs will turn things round quickly now and 2019 will be wonderful.

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I so hope so helixhelix, same for you too,thank you

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I’m in the same boat, I just started taking the meds 4 days ago. I too did what you did but not as long. I’m still feeling exactly like I did nearly a year ago. Different parts of me swelling still can’t bend my knees from the swelling . Knees feet n hands burning weird feelings and still feeling anxious.reading watching frantically anything that will give me some insight and physical relief, my feet have been either swollen sore in one way or another for two years. Misdiagnosed generally feeling frustrated. The only good think sadly under shitty circumstances is joining the site makes me not feel as alone with this condition xxx

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Ooh, that burning is hideous. Thankfully, lost that now on Benepali. I wore a compression glove which eased it somewhat. A friend found bought me it from Dr Arthritis. Felt a bit like Michael Jackson!

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Wouldn’t be without mine. I find Disuppo ones are the best . Limit the sausage fingers effect and make hands more mobile. Not an advert- just saying.......

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Thank you helixhelix (and Veronica)- I appreciate your valid points and I'm sorry about that. I quite see what you mean about the emotive issue. And I also understand your comment about the variations of RA. So much is unknown. I am very impacted & impressed by Clint Paddison's joy and enthusiasm, so I find listening to and watching his work and case studies very helpful and encouraging, he's been a godsend to be honest. It's very early days of course for me, & the RA could still hit me hard, I know. I suppose I just wanted to say that 'plant based' eating and no sugar does appear to be effective for reducing inflammation. But I wish there was an easy, straight cut solution. I wish everyone well on here for 2019 ....

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thanks Effs, I think the immune systems seems to come back stronger against it?? I don't know, but honestly I have been eating clean for ,months, no sweets, cakes, chocs, no nightshades, no red meat

I think my teeth would look like a bunny rabbit now, if I didn't have false ones

and I even had a root canal re done, tooth out, been there tierd it, got the tea shirt, still wearing it on my poor body

its soul destroying

please excuse spelling

all the best to you

xx

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Thank you for recognising the sensitivity....

(Even at my worst, when I could hardly get out of bed, my inflammation levels were only fractionally raised. These days they are "normal" even when I am flaring with swollen joints (or eating sugar!). Perhaps that's because of my extremely healthy lifestyle - but the disease is still very much present. So normal measures of inflammation are not the critical thing for me)

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same here helixhelix, inflammation levers 5, RF very high 278

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Thank you for sharing your experience. Xx

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I'm pleased for you & really hope you continue to keep the black beast at bay doing as you are. I concur with everything helix says, it's been discussed often & does polarise because it doesn't work for everyone. Often the person who it does work for singing it's praises disbelieving not everyone responds positively. If you enter Paddison in the Search box you'll find many historic posts on this very plan.

Again I wish you well but if things do start becoming awry don't leave it trying to get control by plant based or even alternative similar diets... even though you're seronegative joint damage can very quickly happen. RD isn't a disease to messed with or ignored for very long. This is why guidelines recommend we're referred urgently particularly if symptoms & bloods suggest to our GP there's something inflammatory going on or 3 months have passed since first noticeable symptoms.

You mention your inflammation levels, I take it you're having bloods taken regularly to ensure they remain level? I mention this because not everyone physically has inflammation but their bloods indicate they do which of course would need further investigation. The reverse applies too but of course a physical sign would have you hot footing it to your Rheumy!

I'm sure you'll enjoy Christmas albeit not a traditional lunch anymore with all the trimmings. I hope you enjoy being here with us too. I only ask you bear in mind when writing that there are those of us who do well on their own choices & eating plan combined with meds, that way we'll maintain the status quo.

Happy Christmas Frances. 🎄

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Hi effs, I’m new to this site but not to ra. I’ve had it for twenty five years. In the very beginning it was so severe I tried every drug going to get some relief, but nothing worked and the side effects made me sicker. So after four or five years I went down an alternative life path. I changed my whole life. Diet, spirituality, philosophy. I went into remission at forty , and it lasted ten years. Or I thought it did. At fifty , it came back with a vengeance. I had changed nothing , in fact I was even cleaner lol and stricter in my diet. Almost raw, fully vegan. I tried everything and in the end submitted to going to my gp. I had not taken as much as a paracetamol in ten years, she referred me immediately back to rheumatology. I had lots of x rays and could see that damage was being done and had been grumbling away , even during my remission. Five years On and I take a biologic. It was such a huge huge decision for me since I truly believed you can heal anything naturally. I felt such guilt that I couldn’t do it, it hadn’t worked. Now I’m a bit more.....let’s do it all and cover all bases. I’m a lot more discerning now too. Natural health remedies and gurus are also big business. I know nothing about the guy you mentioned so I’m not implying anything about him or his way. Lol. I’m sieropositive btw. There are so so many different factors to this disease, and no one shoe will fit all. But I believe the important thing is no one is wrong for doing things their way. Trying and seeing what works, but then if it doesn’t trying something else. I’m so happy it’s working for you , truly. And I hope you continue to see great results . Xxxxx

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Thank you for sharing this. Must have been so hard to accept that your efforts hadn't worked after 10 years. There's what I think is a great post by another member who tried her best too, here. It's a tough disease in many ways.

healthunlocked.com/nras/pos...

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Very well written. Down to earth and honest. Enjoyable read.

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Helix, I’ll admit I was more devastated by that than the actual pain. But there again, this disease is my greatest teacher and for those life lessons I’m grateful. I certainly wouldn’t choose it, but I have learned so much through it. Xxx

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Wonderfully and honestly written.

What I’ve learned in the short time I’ve been a part of this group is that I am not alone in the very real suffering associated with ra and fibromyalgia and all of the other aches and pains that come and go.

I’m grateful.

I was at a point where I was questioning myself about all of it. It wasn’t a good place to be. I am also grateful for the give and take and sharing of ideas.

I don’t really care for what is sometimes perceived as someone shoving their opinions or perceptions of the ‘best’ way to handle ra. If it really was all that great, why would they even be here?

What I do enjoy is the camaraderie, simple smiles, empathy, compassion and shared feelings that support one another.

I do not like ra but I like that I am not alone in the real pain and emotions that it brings with it.

I want to thank each and every one of you who’ve honestly shared your truths, brought a smile to my face and have reached out when I’ve been struggling.

And I wish you all a beautiful, pain free or close as you can get, Christmas, filled with love and cheer.

Thanks for being here. Xoxo

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Thanks HH _ sounds like my journey. I am living my life, back on vintage cheese 🧀 as lost all my lovely fat reserves - and happy. Hope you are well.

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Give me vintage cheese any day over vintage clothes or cars or LPs.....

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😂

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I'm pleased you have found something that works for you, but the only thing that has helped me is methotrexate, without it my poor quality life is miserable.

Eating healthily is a wise move for everyone RD or not.

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I took a blood reaction test which showed a reaction to wheat, oats and egg yolks. Stopping eating these foods eliminated the pain quite quickly. The food test was about £100. It may be that if you took a reaction test it would show certain meat causing a reaction.

I also on occasion take some of the following Black seed oil, pregnenelone, CoQ10, curcumin, Fisetin, Vitamin B1, Fish oil and Boswellia some of which no doubt help.

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Tried it plus I have a PT. also take every known supplement including flax seeds, curcinum, MSM Sulfur, fish oil, egg shell membrane. Costs me a flipping fortune. Do any work? Not that I’ve noticed and worst flare was 4 months into ‘clean’ eating and had to call out of hours. I could barely move. Now on Benepali plus mtx, plus sulfa and still take all the supplements as can’t be doing any harm. I eat exactly what I want, when I want and feel the best I ever have. Clean eating has gone out the window and I have a social life again.

Someone in a networking meeting called me out on healthy eating and RA. I almost felt ashamed that I was on meds and not following her healthy eating plan as she said she was cured and I would be too. I thought there must be something wrong with me. I’m always very compassionate and respectful, but I’m not sure I was either of those then!

I’m really pleased that it’s worked out for you, I really am, but it doesn’t work for many people who have been living with RA for many years and have probably tried everything they can. Must admit,you’re absolutely glowing in your picture. Have a super Christmas x

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Thanks to all for your responses. I really appreciate the comments. On reflection my posting does seem naive, & unrealistic so apologies for the lack of sensitivity. You've been very kind in the way you've handled it. I'm now much more aware there are many layers and levels of complexity - a lesson I really needed to learn and take on board. This condition is an ongoing learning process ...

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you done nothing wrong Eff, if I thought I found a cure Id be shouting it from the roof tops too!!!! you mean well, and I pray it carrys on working for you xxxxxxxxxxxx

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I agree!! X

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I didn't take offence at all about what you said. Certain foods and allergies do fuel inflammation. That is a fact.

It doesn't always work for everyone as there can be other causes of chronic disease like underlying infections and toxins. Science highlights this time and time again. However, the NHS is useless at picking up chronic infections and a specialist told me last week that even if they do pick them up, they dont always treat them.... Gasp!! Apparently, science doesnt show enough success in treating infection. Hmmm. I wont say what i really think about that. Although, i do believe alternative medicine can excel in this....

In addition, toxins are not tested at all on the NHS. Personally i blame the system. Not any patient. I had to do private testing to pick up some of my infections. The nhs could tell me after decades of suffering that they finally knew i had chronic infection but didnt know what one. Marvellous lol. I am very ill but didnt see you blaming or shaming anyone in your post. i am aware that you posted to help people. Please dont worry and thank you for sharing what worked for you. X

Ps even if people do have underlying infections or toxins they should really be very careful with diet. Carbs and sugars feed microbes etc.

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Hi Frances,

Don’t be too hard on yourself.. I was diagnosed in my twenties and now at 43 am still learning about this disease. The lovely thing about this forum is that we can all share experiences. For me personally, I’ve tried many things including diets and holistic approach, just about to embark on my 8th ‘wonder’ drug with bated breath. I’m not excessive but if I want a cheese sandwich or a glass or two of Prosecco I bloody well have one as I suffer enough without denying myself. 😁 Hope you have a lovely Christmas xxx Sarah

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Hi Effs, Being sensitive to others feelings applies to all of us not just you. I can't see any problem with your post. You shared your experience in your own words. Your not forcing anyone to do anything. I have always said ' opinions are like noses, we all have one' Yours was very polite! I hope your ok. Best of luck for the future. Xx

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So sorry that you were taken aback by the reaction of the forum. Your enthusiasm in trying alternative methods in controlling RA should be welcomed not squashed with the " reality card". True enough that many have tried in their own way with dietary modifications, many have found no benefits while some do see a clear connection between certain foods and the effect on their inflammation level. When you try hard and don't succeed it is quite frustrating but this frustration should not be used to turn off someone elses hope and enthusiasm. Hope is a good and energizing thing and RA is an illness with so many different faces that it is impossible to know what will help and what not. I do hope the response from this forum did not decrease your eagerness to do your own research and experimenting. Best of luck.xSimba

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I wasn't offended in the least. If it works for you well I'm pleased. Anything is worth a bash. Good for you! Works for some not others.

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Happy Christmas Frances. I am so pleased you have been helped with this diet. RA isn't a one stop shop with a cure all. My RA is very different to yours, different markers, and may be more likely to cause serious erosive damage. I have had this disease for about 25 years and like you was determined to find a cure in the early days and paid out a lot of money searching for it. I didn't find one for me and have reluctantly come to accept that for me what my rheumatologist advises is best to control my disease. Eating and living healthily are part of that alongside drug therapy.

Please be sensitive to others feelings about Paddison program, it certainly doesn't work for all.

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Hello Effs, You might be interested in Andys story as a whole. He just posted it on this thread.Andy is in medless remission now with the help of PP.

healthunlocked.com/arthriti...

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Did this lady delete her account after the insenstive comments? ☹

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I thought this was interesting

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Thank you Veronica this was a good one. Really gives hope for a better future in rheumatology. Seems that there really are rheumatologysts with a broader view on supporting health:). Unfortunately there is quite a big problem in trying to support good gut health when you are on RA meds that do very often in fact work against it:(. xSimba

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