I've been diagnosed with RA. My hands and arms hurt - typing can be an issue on some days. and noticed now that my feet hurt. I have not taken any drugs as yet as the side efforts quite frankly scare me! I did not find the rheumatologist keen to discuss anything. he diagnosed and prescribed!
Has anyone tried any alternative treatments?
unfortunately the only way to assist RA is to find a drug regime and lifestyle to suit. We are all individual but if there was another route backed by science we would know about it.
My mantra is condition vs medication vs side effects. All drugs including aspirin can have side effects but uncontrolled RA will be a miserable life.
I went thro a whole raft of drugs to find one that suited me but you have to keep getting back on the bike if after 3-4months the first drug does not work.
Calling NRAs is a good idea as they can discuss your concerns and feeling heard will help too!
PS: if loved ones suggest bucket loads Of turmeric and black pepper this will not cure you either there is no cure for RA.
It can be daunting but you need to do something. Big hugs 🤗
Gosh, how long did it take you to settle? And which drug eventually settled your RA?
You will find lots of people thought the same when first diagnosed ( I know I did) and will have tried all sorts of things recommended by various people but I’ve never found anything or heard of anyone treating their RA without meds. If you don’t take something to halt the RA attacking your joints/organs then you are risking permanent damage and pain. Yes when you read the info about meds they can sound scary but it doesn’t mean that they will happen to you ( even every day meds can scare you if you read up about them) they have to list possible side effects, but I’d concentrate on the good they can do you rather than the what ifs, millions of people have taken these meds and they’re a lot safer and better nowadays than they used to be. Let us know how you get on 🤞🏻 you find your drug quickly 🤗
Sorry, hate to tell you and make you more miserable but there are no alternative therapies that’ll help with RA. By all means try and if you have success then all to the good but as you’ve got an incurable and progressive disease which will damage your joints in the long run, make you fatigued and painful and possibly unable to function well enough to continue to work you need to bite the bullet and accept that you need the modern drugs that are prescribed these days. Your alternative therapies can run alongside them.
The newer medications prevent all of the above once you have the right prescription - and it can be trial and error for some months - and although every drug has side effects (even Paracetamol) once your body starts tolerating them you’ll be on the road to recovery. The side effects listed are always terrifying as due to the ‘don’t sue me culture’ every one has to be listed but most people get mild symptoms and, for example, if it says 1 in 10 people get a side effect 9 don’t!
Do hope you won’t take fright against taking whatever your rheumatologist has prescribed. You won’t know till you try and as I said, sometimes it takes a while but don’t put your joints at risk. This disease doesn’t go away by itself.
All the very best of luck whatever you decide to do as of course, it’s entirely up to you and your choice, your body.
I'm with the others 😊 I was just grateful that the medications were available and took what the rheumatologist suggested without thinking about the possible side effects. I've been lucky in that I haven't had any serious side effects and my joints are undamaged and mostly painfree. I'm feeling so much better than when it first appeared (in 2019) that for me, it's definitely the way to go.
Well done to you, great to be painfree too! What meds made you pain free?
I'm on triple therapy - Hydroxychloroquin, Methotrexate and Sulphasalzine
Yes, a lot of people try alternative treatments to try to control rheumatoid Arthritis and 100% of them fail.
Do you really think the 36,000+ members on here, plus all those with RA who are not a member, would take the drugs you read about on here, if there was another alternative?
As of 2024…. If you sre unfortunate enough to be diagnosed with rheumatoid arthritis. If you have any desire to eventually lead a normal life again, it really is essential that you listen to what your rheumatologist advises. ….& get started on the first step by taking the Disease Modifying Anti Rheumatic Drugs…you have been prescribed.
Sadly these days rheumatology is very short staffed & consultants don’t have the time to spend on detailed explanations to new patients. You will find the rheumy nurses in the department will be very helpful answering any of your questions re drugs or anything else.
So please do start taking what you have been prescribed….& commence your journey to getting some relief……
You are so right about Rheumatologist so busy after lockdown it is so hard to get their attention like the old days. They are far too busy, including the Rheumy nurses. But this forum is so good to read because it help so much to know that there are so many that do eventually find the right treatment with trial and error and also this forum is so good for the little tips which a Rheumy specialist can't advise on not having the illness themselves. I say this forum and NRAS are really a massive help and reassurance.
I’m glad you took what I said in good part. I was diagnosed 20+ years ago when biologic drugs were just appearing in the US,then eventually here….so it took me 16 year to be prescribed those drugs, but I did have 7 very good years on Methorexate…so don’t be downhearted if you don’t get fast tracked to biologics…you really can lead a very good life if a Dmard suits you.
I hope you are one of the lucky ones who find a drug regime that suits you, so that you can lead a comfortable life!
Hi. I haven’t been on the RA site for a while, but have just started receiving updates, so I thought I’d comment. When I first started with RA ( about 2015 ) my specialist didn’t start any drug treatment straight away, I think because I was seronegative. I was just given painkillers. I also tried diet, turmeric etc, not much affect. I went through a lot of pain, and the only things that helped me were rest and heat pads. But everyone is different, so you may find that diet may help? Anyway, when my specialist put me on hydro chloroquine and MTX these drugs made a world of difference to my general well being. Hardly any pain and most joint movement is ok. I still have a few problems ( nodules on joints, recurring finger joint pain, can’t walk long distances any more ), but I’m 100% better than I was. Most people with RA eventually end up on MTX or a more modern biological treatment. If you are prescribed MTX, ask for the injectable type, the tablets gave me terrible bowel problems.
Hi, just re bowel problems, my nurse has upped my folic acid to try to help and said swapping to the injectable MTX only usually helped with nausea issues not anything else, was nausea what you were suffering with?
Hi Cat E.
Most of my problems with MTX were down to bowel problems. And by this I mean that the tablets gave me very loose bowels, such that I was very wary of passing wind. As soon as I changed to injectable MTX the problems stopped. I did suffer with very slight indigestion / nausea but not enough to bother me.
Thanks, loose bowels is my problem too which actually the increase in folic acid does seem to be helping but interesting that she didn't seem keen on swapping me to injections.
Hi. I was on tablets for about 18 months, and my RA nurse suggested injections. If you are ok with injections, then I think that it’s more convenient. I don’t know if cost is a factor?
oh I think I read a while ago that the injectable MTX can still affect the bowel and that sicky feeling?
Hi. From my experience injectable MTX solved all my bowel problems, but I don’t know about other peoples experience. Just thinking about taking MTX in tablet form, it has to go through your stomach and gut, so there’s that. The injectable form goes straight into your subcutaneous tissue and is absorbed from there, bypassing the gut, so no chance of interacting with the gut.
fig you are referring to the mention of cancer in the patient information leaflet, it s extremely rare, but you should be aware that uncontrolled inflammation comes with its own risks, 1 of which is cancer. Every drug has side effects, most people manage fine. Things like fatigue and nausea often subside as your body adjusts. I would urge you to try what’s been given, if they don’t suit you, then you can stop. Without meds your on a slippery slope downwards, which is likely to be irreversible.
when first diagnosed I spoke to a 90 year old who had been diagnosed with RA in her late 30’s. She said she tried every diet etc and nothing worked. Her advice for me was to take the medicine. It is awful when our bodies are having such a hard time and really difficult to comprehend everything. It took me months to wrap my head around it all and finally agree to the medicines. Once you start the medicine and you feel better you’ll see it as a friend rather than a foe. Anyone who claims that they, for example, cured themselves with a gluten free diet never had it in the first place imho.
Sadly, I have to agree. Drugs are absolutely vital to keeping RA under control.
Lifestyle is just as important though. It really helps the body cope if you exercise and eat healthy. You will find lots of information on here.
Be your own best friend, kindness to yourself is essential. Get to know as much as possible about RA, treatments etc.. It helps to be well informed when negotiating treatments with doctors.
Go gently
I should add… negotiating your treatment is absolutely your right. A good consultant/doctor will discuss and recommend but never fail to listen and address your concerns.
no this is heavy duty stuff. Without meds you will have badly damaged joints. It may take some time to find a regime to help you but you will get help eventually
Once apon a time, early in my RA life, a well meaning friend suggested I should change my diet and I asked my now retired and very well respected consultant about this.His response has always stuck with me..
"You can try, but you will be back in six months and worse than you are now."
One of the cruelest things about RA is that not only do you suffer the pain and debilitating effects on your life but suddenly you will discover that everyone has an opinion on how you can cure yourself. Some will take this advice seriously and jump through all sorts of hoops chasing the rainbow and believing this advice; Some will be able to smile, politely thank them and ignore the advice and some, like me, will feel the quilt this advice inflicts as we blame ourselves for our condition and inability to get better (even with all the drugs).
I've had advice over the years rangeing from eating less avocado and almonds (I'm a northern Irish farmers wife I doubt my husband would recognize an avocado) to going on a broth fast for 45days were you drink bone broth and eat a slice of toast in the evening if you feel weak, I work a demanding job, have five kids to run after and help my husband on the farm. I get a migraine if I skip breakfast. I have random bottles of the first distill of bushmills whiskey (70%alcohol I think) as some swear by rubbing it on the affected joint, I'd need to bathe in the stuff. I've had supposed friends privately writing to my GP with suggestions as to my condition, this really upset me as I felt they went behind my back and were suggesting I wasn't capable.
I'm really sorry you have been diagnosed with this. I really hope you find a treatment that works for you and quickly. My approach (on my less charitable Day) to the unsolicited advice is if the NHS can't cure me nothing can.
At least you found this forum early in your journey. There are lots of opinions on here and hopefully you'll find people you can trust to help you. We are a broad church and it's ok to not always agree.
Love your comment concerning your hubby and avocados. Still chuckling. I was born and brought up in Northumberland!!!!
The best outcomes for RA occur with the quickest intervention. I was told if you start treatment within three months of symptoms you get best outcome. It's called early intervention I think. I'm in remission, which means no active pain or swelling. Don't hang about. You will adjust I'm sure. It's a shock at first.
I was dx in childhood, now approaching 60. I've taken MTX for over 40 years and various other DMARDS daily since diagnosis and still have severe joint damage which has necessitated neuro and ortho surgery.
I hate to think what state my joints would be in if I had not taken the drugs.
Hi Nat
I have to wholeheartedly agree with what other members have said. Being on a medication route is the only way to stop progression of RA. I’ve only been diagnosed about 18months so understand that the side effects can appear scary. Most people on here have had their own RA experience of trying different meds and finding one that works for them. I am now on leflunomide and hydroxychloroquine, which I can tolerate well, so I’m hoping this has settled the RA for now. I’m still not pain free and have problems with fatigue but as others have said, there is no cure and it’s about stopping the progression of the disease. I really hope you can discuss potential meds with your rheumatologist and the NRAS team are great if you are unsure about anything.
Good luck, Kati xxx
Rheumatoid Arthritis is quite a big thing and it does involve drugs to do the heavy lifting. When I was first diagnosed about 8 years ago I tried everything. My cupboards still have Turmeric, aloe Vera, flax seeds, bitter melon, tart cherry juice and various other things that well meaning people suggested. None worked. Nothing. Methotrexate and biologics did work though.
One of the saddest stories I have ever heard was on a Facebook group about natural healing for RA. It was a lady speaking about her late husband. He was absolutely determined not to take prescribed meds and his RA went to his lungs. He still dug his heals in and sadly died. Uncontrolled inflammation is a killer and DMARDS are designed to reduce inflammation. I do have increasing inflammation currently and I can barely walk from one room to the next without needing a lie down. I’m having my meds changed currently as after a while, they sometimes do stop working.
Supplements are great, but probably best alongside prescribed meds. Hope you improve soon.
Hi Nat. I'm so sorry you have Joined The RA club. Take the meds. If you get side affects you can't cope with the Rheumatologist will try others. You may be lucky first time lots are others like me need quite a few changes.
I remember getting my first MTX tablets around 3 years ago. I looked at them and looked at them too scared to take them. I eventually did after talking to people on here. I'm now on injected biologics and sulfasalazine tablets after quite a few different meds.
I got that I couldn't walk, dress, cook or do anything because I had to stop meds whilst I had to have various tests etc. to start another med. I began my RA journey in the height of COVID so had to wait a long time to see a Rheumatologist for the first consultation. It was hell.
You'll hear folks who do not know anything about RA say eat this, do this, take that, but the only way to go are the meds.
Keep in touch with the lovely people on here, they've got me through it many a time and still do. Just remember now they HAVE to put any side affects in the patient leaflets even if Only 1 person in a million gets that side affect or they could be sued.
All the best and take the meds. Xx
Hi Nat
When I tell old people I have RA they nearly all look concerned and mention someone they knew from an older generation who had RA and was in a wheelchair or who had crippled hands. That's what happened to people in the past when there was no treatment.
The drugs have potential side effects but that doesn't mean you will get them and if you do you can stop taking the drugs and the side effects will stop.
Please take the drugs, the damage from RA to your joints cannot be reversed once it has happened.
By all means get your vitamin levels checked and take supplements for vitamin D and anything else that is low, but this should be in addition to medication.
Jenny
Lots of excellent advice on here. Remember RA is not just about aches and pains. The inflammation can affect your whole body. I have had RA for over 40 years. Biologic drugs have been amazing, ignore the idiots who insist you can cure this by changing your diet, you cannot. My body is testament to the wonderful drugs available now not being available in the 80’s & 90’s. I have replacement knees, elbows, wrist surgery, and rebuilt feet. My hands are twisted, my body covered in scars. But it could be worse I am still mobile ( a bit). My blood results are good and demonstrate that the drugs do work.!
I can wholeheartedly agree with all the responses. I was very reluctant to start meds, then took them reluctantly for 8 years - then, for complicated reasons had to stop them for a while. Within 5 weeks I was in a total body flare up, unable to do anything.
I couldn’t wait to get back to medication.
Hoping your treatment goes well
I've had symptoms since 2019 and I got diagnosed February 2023 (the only time I've actually seen my rheumatologist) with Rheumatoid but in my case it is only effecting one joint.
I've took the holistic approach since November to give it a try and managing my condition with diet and regular exercise....prior to this I was on 6 sulphasalzine a day. I was wearing a wrist support every night due to the pain. It has definitely done something for me and I'm currently almost pain free. For me a lifestyle/diet change has helped dramatically....for how long that will be the case who knows, I'm trying not to get carried away with myself. This disease is certainly an individual case and there is no one size fits all approach. Good luck on finding something that works for you.
Hey.....
March 2023 sudden onset of pain and I was unable to bear any weight and struggled to walk (pain all in left ankle and swelling in right foot).
I tried everything in the book for 10 months as my GP initially told me I had Plantar Fascitis and OA and nothing that could be done.
I changed all my footwear immediately/insoles, as advised, which was a help. The pain remained intense and I was miserable.
I changed my diet beyond belief eating only anti inflammatory foods and added turmeric, hyaluronic acid etc.
I did backward walking every day (do believe this helped with knee pain a little tbh)
I soaked my feet and massaged them - daily ibuleve and pain killers.
Sept 2023 sold my house to purchase a bungalow due to fear every morning of falling downstairs.
Fast forward Nov 2023 back at the GP as not accepting PF diagnosis any further. Started with pain in fingers and unable to form a fist with my hand. I was still advised to use pain killers.
December 2023 back to GP again (I would not believe I was being a nuisance as I had never previously sought health support) saying this was not right as additional fingers had seized, unable to walk etc... Was really struggling to remain in work as driving/walking etc etc becoming limited. SEVERAL blood tests later confirmed RA and finally referral to rheumatology Dec 2023.
Jan 2024 consultant did full examination and ran further tests (I was not typical with my onset of RA).
Feb 2024 confirmed (without doubt) seropositive RA.
I received steroid injections in Feb and started meds - had to stop one of these within 2 weeks due to blood test results (sulphasalazine). Currently on Hydroxy only.
I want a future and my passion for walking in the Lakes (accept mountains are a thing of the past!) outweighs the thought of taking the horrible drugs, so I will follow advice and remain tuned in to my own body.
I move into my bungalow next week - despite stairs being less scary now thanks to injections and meds etc.
My consultant said after injection this may allay some of my fears about the drugs, when you are reminded of life with less pain again. She has been amazing and she is so right, as any side effects can be negotiated and the joys of reducing pain and increased mobility outweighs the thought of taking these drugs imho.
Only you can decide what to do with your diagnosis and I know there is lots of scary advice out there - stick to the recognised sites and avoid Dr Google.
I'm late 50's and never taken any medication before. I am of normal weight and non smoker. I am convinced unrelenting stress possibly triggered all this for me.... but whatever the cause I need to manage this the best I can.
Good luck and be kind to yourself.
Thank you all for your wonderful responses. I am looking at obtaining an appointment with another rheumatologist, one who will discuss options and be supportive. Are you able to recommend London based rheumatologist on this site?
Hi actually you hit the nail on the head rheumatologist do exactly that diagnose & prescribe. It's the specialist nurse you need to speak with to discuss your fears etc. None of us are filled with joy at taking as my friend calls it " hard core" meds but the alternative is worse.
I could have started my treatment straight away & like you was just given throw away you have this so start this treatment not helpful as was told could do my treatment while I was abroad which was untrue. Result was went from fit person to bed ridden needing to come home early from abroad.
Fortunately the lovely nurse kindly gave up her lunch hour, I had got my list of questions sorted by then & we got me started on MTX that day. That was 11 years ago & while it's not plain sailing, despite well intention ones telling you, there is no alternative treatment that will prevent further damage to you body.
It's difficult cos some appear to "cure" themselves with diet , supplements, etc etc but we never know if there's a relapse in their case later. 🙂
Hello Nat
The evidence is that early intervention with DMARDS (which I presume you've been prescribed) offers the best outcome in reducing the severity and progression of the disease.
There are other things you can do to help. Eating a healthy diet that's low in processed foods and sugar helps to reduce inflammation, as does reducing stress and keeping as active as you can. It's certainly worth doing this anyway, but in terms of natural remedies, I don't think there is anything with a proven outcome.
I tried everything to avoid drugs and consequently wasted valuable time in getting started on them. If I had my time again, the first thing I'd do - after taking medication - is have a look at my diet and make sure it was healthy as possible.
I wouldn't cut out any food groups - fad diets do not help, and actually risk depletion of the vitamins, minerals and nutrients that are needed for a healthy body, but sugar is the one thing I would try to eliminate.
Try the drugs on offer and see if they help. You can always change your mind if you decide they are not for you. But the most important thing is prevent further damage. The earlier you begin to control your disease, the better the outcome.
RA/sJIA is a diagnosis that can be scary. It doesn't have to be. I am with you on the meds and side effects, but these can be kept to a minimum. Stay in control and try to keep all the meds you take to a minimum, and that includes painkillers. Trial and error will enable you to find the dose that suits you. Being proactive about your RA will help with the disease progression in the long run. Exercise is an important part of your treatment plan and should be carried out every day along with any alternative medications that suit you.
Unfortunately, I was diagnosed with sJIA 51 years ago and have lost count of the amount of different drugs I've been on to reduce the inflammation, that can take over the body if it's not halted in its tracks. The only drug available to me at the time was prednisolone, and due to this, the progressive disease has damaged most of my joints. I have tried all sorts of diets and alternative medications throughout my life alongside DMARDS and NSAIDS to no avail. I was prescribed etanercept, a biological medication, in 2008, and although it improved the inflammation dramatically, I still experienced flare-ups several times a year.
However, in 2017, I was introduced to doTERRA lifelong vitality (LLV) and other doTERRA essential oils and supplements. After starting LLV I haven't had a flare-up since. I discussed with my rheumatologist the possibility of taking the supplements and essential oils and she was very onboard with my plan to try them. I wouldn't do without them, and they've certainly helped with my sleep and inflammation. That said I still take a maintenance dose of prednisolone and etanercept so that I have a two-pronged approach to my treatment plan.
I would advise that you start on the treatment your rheumatologist has given you to get your RA under control, and in the meantime look at other alternative medications that may suit you. Please don't take exercise lightly. It is a must to keep your muscles strong which in turn will protect your joints. Medications these days are very good at controlling the disease and if you are proactive about your RA and undergo self-care there is no reason why you won't be able to live a fulfilling life with minimal pain. Good luck x
I talked to a consultant recently about the side effects of some drugs. The Lancet has recently written about the risks and I asked him. He weighed up the pros and cons for me and I agreed the benefits outweigh the risks. I was like you, searched everywhere for an alternative but wish I had found my current drug sooner - before a hip replacement, damaged hands and foot. Good luck with finding what works for you.
Try to change your mindset about the drugs. It’s so lucky that so much research and development has gone into RA medication and all the options are available. There is no point ruining your life worrying about side effects as with our condition there is really no choice. I feel so grateful for the drugs.
I too have RA and it affects my hands and feet. My comments re prescription meds echo others and it really boils down to taking something that is proven to control the inflammation, which I do religiously. Sitting alongside this however I use Isotoner compression gloves (and sleep with these on). These gloves help to almost "reset" the discomfort in my fingers. If I forget to use them, I can definitely feel the difference the next day. I also bought a small massage machine that I use in the day time if my hands feel sore. This too works. For the feet, I visited a private podiatrist and had a pair of orthotic insoles made. TBH I'd struggle to manage everyday tasks without these. Although expensive, they are worth every penny. One last tip, I also take a Hyaluronic supplement. This supplement aids the synovial fluid levels in the joint tissue, something which RA negatively affects. Again this has helped me and I benefit from its use alongside the prescription meds. Here's hoping some of these are of help to you too!
Second the hyaluronic acid supplements. Also helps dry eye.
any specific brand?
Hi Nat, yes Bulk often have special offers and high strength. I'm also on hydroxychloroquine which, I believe did exactly what it's meant to do and stopped things progressing. Had plenty of episodes of feeling like it wasn't doing anything but DMARDS aren't pain killers (another topic). But overall I think I'm OK. Good luck. 🙂
I'm using a high strength one from Weightworld bought online. Think it was about the 12 week mark that I felt an improvement, so a degree of patience is needed. Good Luck x
when I was diagnosed aged 17 with adult onset stills disease in 1979 I was extremely ill by the time I was prescribed medication. Whilst in hospital I was told if they hadn’t reached a diagnosis and prescribed when they did I would be wheelchair bound for life. Good luck.
It's important to start treatment early on to avoid joints eroding,more pain and flare ups. It took a while to find a drug that my body liked so a little experimenting to get there. I'm 19 years into this disease and I'm stable. At first it's getting your head around it and it can be overwhelming but we are all here to support you.
Suffering with RA
Newly diagnosed with RA.... Bewildered and scared!
