I gave up taking methotrexate and follic acid which I wasn't convinced of working without being carcinogenic. Perhaps I'm being foolish as RA is progressive. But I wanted to try other more holistic approaches like giving up sugar completely as I'm addicted to it. I was also going to try a gluten free diet for a while. I don't smoke anymore and I don't drink anymore. Has anyone any experience or success with dietary supplements or any of the above? Thanks
Newby and curious.: I gave up taking methotrexate and... - NRAS
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ThomasTom
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I have PSA ad have found that along with MTX, tha ti also have to eat just right! I also know some that are trying to do it without meds too. What do you have to lose? Give it a try, but please keep an open mind to what is happening underneath and what the meds are designed to do - Stop further damage. GOOD LUCK!!!
Thank you! Toby
in reply to dazzlebandit
Unfortunately 'what's happening underneath' is exactly what you have to lose.
I have PsA too and I agree a good diet is important. So is regular exercise. I think the 3 things: excellent nutrition, exercise and drugs are equally important 'weapons' in the fight against RA and PsA etc.
I take the drugs because I want to hang onto my joints and don't want uncontrolled inflammation to start attacking my organs or a return to the fatigue that made me feel like one of the living dead.
Oh well. I suppose it's partly dependant on how bad your disease is .... but sometimes the damaging potential of it isn't reflected in pain levels or even swelling so I'd advise caution.
ThomasTom in reply to
I'm not terribly well informed generally- especially when it comes to internal damage potential. but I'm here - asking because it's been very fierce recently and I'm just glimpsing the possibility that I might be unable to walk in a few years if it progresses in my feet any faster. Quite a shock and a wake-up call. Reviewing all my options and grateful for your experience. Thank you.
in reply to ThomasTom
It's not particularly easy to get well informed about these diseases. There is a ton of stuff on the internet but it can be difficult to differentiate between evidence-based info. and the other kind!
And finding information about what inflammatory arthritis can do to the rest of the body apart from the joints is really hard. But there are plenty of members here who have 'co-morbidities' caused by RA or PsA which have affected their eyes, their lungs, their hearing etc. I think the potentially extensive effects of the diseases are a good reason to get informed and to use that knowledge to press for better treatment if necessary. Having said all that, I do not know what percentage of patients with RA, PsA etc. are likely to have such problems. Hopefully not too many ...... But joint damage is quite bad enough and we all know that is a risk for most of us.
I guess I'm 'lucky' (ha ha) in that my disease hit me like a steam train. So at least I didn't really have to think too hard about whether or not to take the drugs - things were very black and white. I'm loads better now. Nobody wants to take the drugs but to my mind they're the only things that can influence the course of the disease itself as opposed to just controlling or improving symptoms. And of course the biggie is the question 'what's going to happen down the line?' Perhaps it would be as well to have a serious talk with your rheumatologist, to ask him or her where they think your disease is going.
There are many more options than Methotrexate too!
ThomasTom in reply to
Thanks, yes lots to think about. I'm in the process of reregisering with a doctor here in North Yorkshire, so I'll get sent on I guess to the nearest hospital once that's done.
Many thanks !
This is a long term condition which varies from person to person as well as their reaction to the various drugs available. There is no telling in the future how your disease will progress and the aim is to prevent joint damage or at least slow it down as any joint damage is not reversible. The best person to discuss your way forward is your rheumy nurse as there are other drug options available if you feel this one is not working for you although it can take 12 weeks to start working. These drugs are not given out lightly and it can take some time and changes of drugs to find the best solution for you. I am probably looking at this from the other side of the fence in that I have had periods of being very uncontrolled due to not responding to drugs and really needing them to work to give me a somewhere near 'normal' life and now going for a knee replacement at 48. Farm
Thanks Farm. I moved and signed off at the clinic a year ago. I think maybe I should think about getting treatment at the hospital- and the nurse as you suggest. I'm just trying everything naturally first, including Boswellia for inflammation instead of ibuprofen.
I'm grateful for your reply and experience and I hope your new knee operation goes well. I heard from a farmer here it's given him a new lease of life.
It is a personal choice, and it also depends hugely on what form your RA takes. Some people have a more gentle, non-erosive type that whilst painful at times doesn't cause the fast damage that the very aggressive types do. And with a lucky few it can even burn out after a while (I'm still hoping!). So it may well be that you can try out different approaches without risking serious joint damage. I certainly find that my changes to a more healthy way of life have really helped, but alongside the drugs for me rather than instead of them.
But I do really encourage you to try to get onto a rheumy's books, and discuss this with him or her. It may well be that they can give you a better idea of how your disease could develop and it's also important to have a fallback in case things don't go to plan. It can take months and months to get a rheumy appointment anyway. I've found that my rheumy is very open to ideas, and would never insist that I take anything I wasn't happy with. For example I had a spell last year where I wanted to try reducing drugs, and she was happy to go along with that - but when it didn't work she re-prescribed within days.
Thanks very much HelixHelix, really helpful and I'm gaining a much clearer picture of how to manage things going forward and the options available- really appreciate your reply. Thank you. Toby
Hiya Toby_Tom. Helix talks good sense & fortunately both she & I react well to MTX. Personally speaking I look on it as a DMARD like Rheumys do when used to treat RD, much lower doses so not the chemo drug it was originally licensed for I inject! Some people do prefer the more natural approach, we all have choices, & I would prefer not to take all I have to but without them I'm not good at all & prefer to stay with what I know. Maybe speaking to your GP & seeing if he/she is aware of any Rheumy's who are open to the less ordinary meds used to treat us. There may just be one who is willing to try different approaches but do feel it is best to try under the guidance of a fully medically qualified professional as some of the alternative natural anti inflammatories etc aren't without their own issues, though there is an interesting piece on boswellia, trials for use in OA patients on the Arthritis Research UK website, don't know if you've seen it? arthritisresearchuk.org/art...
I do hope if you are able to go your preferred route & it's successful for you. Do keep us updated, I'm sure we'd be interested to know how you do on them.
Thanks No More Heels, that's great. I'm feeling such an emotional tide reading these responses. I wish I'd known about this site when I was diagnosed and started taking Methotrexate- it was an isolating experience and I felt so nauseous all the time. Maybe I woukdnt have given it up so readily if I'd considered the joint damage I'm maybe having at the moment. My heels are so tender in the morning I can hardly put them on the floor before I walk the dog and pretend everything's ok- I'm really absorbing what people are telling me and so glad you and others took the time to reply. Will also check out that link. Thanks and My gratitude. Toby
You're not unusual feeling as you do Toby. It's knowing you're not alone having such a dashed awful disease. Life can change if you find the right meds, unsure about natural approaches personally but I'm always open to discussion, never a closed mind!
I've had such a good response on MTX I do tend towards defending it & actually did wonder if everything was tried to help you be more tolerant of it but didn't think it appropriate given your question. There's no denying it is a powerful drug & not without side effects for some but often can be overcome reasonably simply with good results. I used to take mine over the day with meals 2 tablets at a time which was ok but not without problems so my Consultant changed my script to injections which I tolerated better but only when folic acid was increased from 5mg the day before & the day after to every day except injection day did I feel it was really worth the effort. I was prepared to persevere as it felt so much better than hydroxychloroquine, my first DMARD, I moved better. I'm just a little more tired & have less appetite the day after, a small price to pay as it keeps me controlled, 5 years now.
If it was me I'd really think hard about your future health, ask your GP to refer to a Rheumy again? Obviously it's your choice but you'll gather the more you contribute & read here many people struggle, sometimes because the right balance of meds hasn't yet been found to control them or late diagnosis & then the meds have a harder job getting you controlled. You're really in the latter, although you have had treatment it's been withdrawn & meantime the disease has had chance to gnaw away again.
Anyway enough talk, I hope you enjoy the site & hope you receive lots of info to chew on. 
I'm one who has had to come off three DMARDs to date because I couldn't tolerate them. Presently I rely on a very healthy diet and daily exercise (yoga, muscle work and walking) to keep RA away from my joints and tendons as far as possible. As Helix says a great deal depends on how aggressive/ erosive your disease is and how well you tolerate the drugs for it.
My rheumy acknowledged that my RA has so far not been erosive enough to warrant a continuation of drugs that make me so unwell. However I did stick them out for 3 years and have had period of time on steroids when it came back. But mostly I keep on top of arthritis side of things by my exercise routine and by avoiding all refined foods and being gluten free.
ThomasTom in reply to
I'm interested to hear that gluten has an effect. I had allergies as a child to certain foods and preservatives - and I'm going to try that as it seems it could be a strong contributory factor. Brilliant and thanks. Half my battle is the lower spine which I flex using a trigger ball and various postures. I can't think why I've never made Yoga, as I know I'd really benefit from it.... You've spurred me on!
Hi Toby, there's a brilliant book called treating arthritis the drug free way (it's all about rheumatoid) by Margarat Hills it's a cheap paperback but it's amazing!! Won't rant on about it on here as understandably some people feel very strongly about their medication but I've followed it and it's definitely made a difference, I'm a musician and I have quite a heavy workload so looking at alternatives was crucial! I think you have to look at changing certain aspects. Cider vinegar is fab and my skin looks great on it ;). Hope this helps - good luck x
I just ordered the book online. With a recommendation like that how could I not! I think I'm gaining a bigger picture where meds certainly can arrest the development of joint damage, but that there is a lot that can be done in different types. I've felt all along that moving- staying flexible, working through the pain sometimes is all good. I realise too that there are good days and bad days. The flare-ups can be managed. I try too to never carry the expectation of pain from one day to the next. I've learned to live a day at a time and not worry too much about something in the future... But having said that my symptoms are getting stronger so that's moved me into looking at the options.
I'm grateful for your reply, thanks and best wishes. Toby
Hi Toby_Tom
I too am newly diagnosed (September/October 2014) with symptoms from May 2014 and am looking at a more holistic approach alongside advice and conventional medication from my Rheumatologist. I saw a Nutritionist last week and am confident that I can at least minimise the level of conventional medication I need to take if not burn the RA out completely - this is the plan anyway!
I agree with our fellow sufferers, RA is very complex and with 200 different types what suits one person may not suit another. I am on a gluten free and sugar free diet. I am a vegetarian and have been advised not to drink milk from any animal source i.e cows, sheep, goat. Instead I drink soya, coconut and almond milk. I also use honey or maple syrup as a substitute for sugar. My Nutritionist has recommended supplements based on my lifestyle and diet and they contain things like boswellia. I also try to eat organic wherever I can and my diet means no more processed foods, everything from scratch. My Nutritionist suggested I make my own breads as opposed to shop bought gluten free ones as they contain other substances which the body doesn't need.
I am looking forward to the Christmas and New Year break from work which is when I intend to try out my own cake and gluten free recipes. This process is going to be an expensive and time consuming one but really worth it I believe.
I also went to a NRAS meeting where the speaker had controlled the symptoms of her ankylosing spondylitis completely on the Paleo diet.
Please find yourself a good Nutritionist and remember this is all 'a process' so nothing is going to kick in immediately - will probably take 3 to 6 months to see any results. If you live in West Berkshire or Wiltshire, I can highly recommend my Nutritionist.
Good luck and take care.
Mistydawn x
That's very encouraging thank you. It's a big commitment as you say following this exactly - but not impossible. Like you I am vegetarian but not pure as I eat fish, I believe the oils will help my joints. I'm researching so I'll look into the things you've mentioned. I've been diagnosed with RA for 2 years, and 10 with arthritis. Apart from a brief spell on methotrexate which I hated - but have to admit helped initially - I had cold after cold after cold, so decided to stop taking it, that and hearing follic acid causes bowl cancer, and you have to take high doses of that. I've managed with paracetamol, ibuprofen and aspirin for a long time... My symptoms are worse, so it's time to get back to a clinic as well and discuss options. Thanks again! Toby
I did Ayurvedic treatment when I went home last year but my Ayurvedic doctor advised me to keep taking the methotrexate coz any holistic treatment takes a lot of time unfortunately the illness does not for most my RHeumy recommended to take evening primrose oil tests have proven it to make a slight improvement also I have heard aloe vera gel also has positive result but stop your meds only after talking to your doctor stopping sugar is a good thing but I asked my RHeumy and she said that though it is addictive there is no clinical study to indicate there is a connection between sugar and ra
Much as I loathed methotrexate I have to admit it helped. But I was told I mustn't try complimentary medicines along side it as they may interfere with its effectiveness. I've been in denial really, things were better over Summer but I'm really suffering with my hands, feet and lower back. So glad to be on here and getting the benefit of others experience - it's absolutely brilliant. I feel I'm benefitting from real experience rather than just filling my face with pills and saying yes to whatever the clinic told me. I wasn't aware that there were any alternative medications, but maybe that's my fault - I just wanted an easy answer at the time and tended not to think about the progressive aspect of the illness. I'd just meditate on the day and concentrate on all that's so joyful about my life! I'm so lucky I have such a full life. I just refused to let the pain get me down... And now I'm struggling to walk my feet are so tender in the morning! Hence my presence in cyber-chat-land. Great though, and Feeling the willingness and identification with people like you to find the right path. Thank you ~ Toby
A nurse told me she has heard that tonic water helps
If she didn't explain why jinirules, it's the quinine in tonic water. Hydroxychloroquine is a quinine based med & always wondered why when on the odd occasion I had a drink before RD gin & tonic it gave me a headache, even one small one, not normal Spanish measures! All became clear when I complained of headaches on HCQ & my Consultant explained the connection.
Oh that's cool I didn't know it's the quinine that's good I wondered what's the reason for it thanks for the info
A friend of mine with RA, swears by the no sugar/no gluten/no dairy diet. She definitely notices a big difference when she is faithful the that regimen. She also sees an acupunturist which has made a huge difference for her. She says she is a new woman.
Best wishes!
I'm getting a strong feeling that one should try these avenues as thoroughly as possible to see if they work. Many thanks. Toby
There's little doubt a good diet helps I've found Toby, but from my perspective only form part of a good plan in an attempt to gain control alongside my mix of meds. I wouldn't care to risk handing my meds in & trying diet alone, been without meds & I did not like it! I don't avoid gluten or sugars & such but do try to limit meat, eat oily fish & lots of fruit & veg, avoiding those I know inflame my joints. Cod liver oil capsules, 1100mg daily, make up for what I don't eat in fish I'm not overly keen on. Good idea of Mistydawn's to ask to see a nutritionist, certainly if you'd prefer a more natural approach but as you say the two together, traditional & natural, generally don't mix well & really should be with the ok of your Rheumy, if you go that route. You sound as though you've done your homework! 
Good diet in no doubt helps my RHeumy told me to eat less meat more greens
I'm on the opposite side of the scale, as my disease is very active and the pain at times is unbearable. I cant take mtx or other dmards due to liver counts being high all the time, so my only hope is biologics. I have faile 2 already and am currently waiting on my next one to be delivered. When on mtx though id did work to a degree and saved my joints from damage, currently I have been in flare for 12 weeks with no protection, I was hospitalised for pain management as my disease had just been running a mock in my body. So please be careful as this disease can ramp up at any time with no warning, I hope you are successful in whatever way you choose to treat your disease.
Hi Iain, thanks. I'm not up to speed with all the terms like 'bio logics' but I'll find out. It is a bit bewildering at times. I'm sorry to hear you are in so much pain... I can manage, but the worst is lower back pain which deprives me of sleep mostly. I've had to change my life a lot to accommodate arthritis over the last 10 years, I can't sit at a computer - in a 9-5 job anymore - im a graphic designer. But despite the hardships and living on a low income - I've adapted. Recently things are much worse, so I must now take some actions and be decisive. My hands and feet are worse, the RA was only diagnosed about 2-3 years ago. I will be careful as you suggest - as the flare-ups are getting worse and more intense with bouts of near exhaustion, which I took to be an emotional and physical response to the pain.
I'm so pleased I found this group. Diet and the build up of acids in the body seem to play a major part in some people's treatment. There's a lot of good information.
Thanks for your reply... Toby
Hi Toby, can I ask why you have had to adjust your life over 10 years if the the RD has been diagnosed for 2-3 years?, do you also have Osteo Arthritis?, I'm sure you will catch up on any terms used, but Biologics are drugs, Biological drugs that work on the Tnf alpha proteins, (Anti Tnf) some which also work on T cells and there is another group which work on B Cells. Yeah I would agree that diet is a major part in all round well being and health , which with long term chronic illness is a must, but for me I couldn't give up any drugs as it puts me in a terrible place. I would say tread very carefully with this disease as it can be very very aggressive with awful consequences. The Fatigue is sometimes the worst part of it for me, as it just floors you and continues to do so it's horrible. Can I ask are you from the U.S, the reason I ask is because in an earlier reply to someone you mentioned that you weren't aware of other medications, which seems to be a common thing from some members from the U.S.
Hi Iain, I went into a methotrexate trial being held at the hospital in NY (North Yorkshire) I'm British.... I had a slight impression that maybe the nurse was keen to get people willing to participate on methotrexate. I have a poor memory, but I don't recall discussing any other options with the specialist.
I was diagnosed with Osteo Arthritis in my spine by a doctor (not a specialist) the treatment offered at that time was just physio sessions, a class of sorts for back pain sufferers - I was told that it wouldn't get better and to take pain killers. Over the years I asked doctors to refer me - they just told me not to complain as the pain wasn't acute. I paid regularly in London for visits to the osteopath but finally gave up work feeling a general lack of energy, despondent and unable to sit at a computer all day.
I started a small freelance practise, I signed on because I couldn't pay the bills, I worked as a carer for the elderly on a zero hours contract, but I found firstly I couldn't work enough hours to make it worth while and that even with techniques for lifting - enviably some patients, weighed a lot and there were times I had to physically lift them onto the toilet etc as a hoist can't do everything. My back couldn't cope.
By then I was seeing someone and he said well why not move in and rent out your flat and try living on that. Which for the most part I do. I get paid for some gardening work - which is very painful after, but I love it so much I'm prepared to keep going. I do get about 5 or 6 design clients a year from contacts in London. I manage and I have a dog, that gets me up and about in the morning.
I do do a lot of work on my mind, I tell myself the pain only exists there as an electronic impulse. I meditate. I have To work on my attitude -- the really bad days when I have to go to bed, and take strong pain killers -- I try to remind myself how lucky I am compared to a lot of people, now the fear of financial insecurity has been removed. I live in Teesdale just on the border of a north Yorkshire, it's beautiful here.
Soooo, that's a bigger picture... I've listened to people here, I realise that the challenges will get greater as I can feel the condition worsening. As I mentioned in a previous response -- I know there is some ery old knowledge and remedies connected with RA. I'm looking forward to the 'treating arthritis the drug free way' (it's all about rheumatoid) by Margarat Hills arriving. There is also a Margaret Hills Clinic, so I'm interested to read that and the piece about Boswelia, I need to cut back on the ibuprofen which I take every night for my back (hips, shoulders) arthritisresearchuk.org/art...
I hope things are improving with you and thanks agin.
t
in reply to ThomasTom
Toby_Tom, the exhaustion is likely to be part of the disease process itself, a symptom rather than an add-on. Although of course pain etc. can floor you, I understand that. Anti-intuitively, the fatigue sometimes improves with exercise. Gentle but regular exercise will do, not talking about training for the Olympics.
It's worth checking out biologic drugs. There's a view that, if anything, they are 'easier' on the body than the DMARDs. It seems that sometimes they are the only thing that will actually get the disease under control. I felt okay on Methotrexate plus a determinedly healthy lifestyle, but my rheumy saw it as a 'feel good' drug for me, rather than a disease controlling one. And I had to agree. Since starting Humira I feel as if I don't have much wrong with me at all. 3 years ago I was down to one useable limb. Huge change!
Watch that fatigue though, you've had such a fantastic response here your brain must be bursting with options and possible routes to take!
HiPostle2,
Yes it's been great. I think there's so much to think about and follow. Heads buzzing...... What's DMARDs? What kind of drug is Humira? Is there a single resource that outlines the medications or am I best to just search them as tags or Google?
Thanks!
t
Toby, I wrote a longish reply & accidentally just deleted it. The NRAS website is full of information about all things rheumatoid. DMARDs are Disease Modifying AntiRheumatic Drugs, Humira is a biologic, the class of drugs normally offered after failing at least 2 DMARDs, MTX included. You'll find listings of all drugs used at nras.org.uk
Thanks, that's really helpful. I'm Have more than enough homework now!
For now possibly, I understand there's a lot to take in but RD throws so much at us & is ever changing you'll probably find you'll be continually learning. I know I am 6 years on lol!!
I would urge anyone diagnosed with RD to get straight on to medication. My disease was not diagnosed for nearly a year, within 2 years my hips were totally destroyed. Despite being on a barrel of medication my knees were replaced 8 years later. I do have very aggressive disease, even waiting for abatacept to work this year my feet and hands have had a hammering. You have to remember Toby that once these joints are damaged it's irreversible. I have tried all the holistic approaches, with not a great deal of success but it's so individual. What ever path you choose to take Toby I wish you all the very best.
Hello, doesn't seem right calling you metal legs )-: bad khama right.
You're young, I've never met anyone before with dehabilitating arthritis or chronic RA. Not to talk about it. I've just always thought it was old people. I'm 53, I realise now you can get this any age. What's good for me is that I'll do something about it. I tend to go into procrastination mode on difficult issues and hope for a miracle, basically an avoidance of difficult things. I can't avoid what's happening- so thanks for the warning. I'm inspired by your courageous attitude, as well as that of some of the replies I've had previously. Clearly it's a make or break disease. Something tells me it's been more than character building for you?
Thanks for your advise. My gratitude, Toby
I've been told a zillion times I am too young for this disease, unfortunately being young doesn't make you immune from Rheumatoid. I hope you can find a way forward. It has certainly been a journey for me, lots of positive stuff, not all been bad. "Adapt and overcome" has been my motto. Eckhart tolle books have helped me too, especially the Power of now.
Thanks! I hope you have a good Christmas if you celebrate it. ~ Toby
Hi, I have also given up on methotrexate and sulfasalizine. Since June this year. I was on them for more or less 3years. I am trying Apple cider vinegar, and vitamin supplements plus other foods. I am female ,44 years of age.
Hi Naji, I'm starting the Margaret Hills book, TreatingArthritus the Drug Free Way, and the Cider Vinegar etc. See how I go. Learning as much as I can about nutrition. Stopped taking pain killers - mostly. Have had some success with Boswellia as an anti inflammatory. Only problem is I'm in the middle of a flare-up that's primarily effecting the ball of my foot which makes it a bit uncomfortable to get around. So I'm uncertain how long to let things go without registering with a clinic and seeing a rheumatologist. In fact I'm probably going to get the ball rolling and then make a decision once I have a consultation. are you finding benefits yet from your chosen route?
Hi all, I've just discovered this website and have been blown away by all the kindness and the info you share. I was diagnosed with RA two years ago, at age 31. I also didn't want to take the immunosuppressants straight away and wanted to try a more natural approach first. My rheumatologist at the time got very upset with me, wasn't a pleasant experience. I've since also gone to see a nutritionist as well as an Ayurvedic consultant, and attended various classes myself. I think the combination of undetected food intolerances (11 of them!) as well as emotional stress (when my father died) eventually triggered the disease. I've done very well on a sugar-free, gluten-free, dairy-free, mostly organic diet, with little meat but some fish (I did go vegan for 6 months, but found that very hard). Also changed my lifestyle to include yoga, and other things to manage my stress better. In the early stages I had steroid injections, and then prednisolon or ibuprofen to manage the pain. Now I'm mostly pain-free without medication; I'm being monitored by a Rheumatologist who is happy for me to continue like this for now. My RF has decreased, and the other inflammation markers are back to normal
Hi Moira, I've been blown away too. The response has been phenomenal and exactly what I needed to make a decision to eliminate all the potential food triggers. Very early to say if it's working, but really encouraged by your experience. Thank you!
Happy New Year
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