Newly diagnosed

Three days ago I was diagnosed with RA after having a painful left hand for weeks and weeks. I see a specialist tomorrow. I have done a lot of research and the side effects of all the drugs available scare me more than the pain.

I am going to try a more natural way through diet etc because I don't want to be in drugs forever.

Anyone else tried other methods

36 Replies

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  • The side effects of most drugs used for RA are rare. I take MTX, Sulfasalazine and Hydrochloroquinine along with Naproxen and Paracetamol to reduce pain. I have advanced bone erosion in hands, knuckles, thumbs, feet, toes and knees. I take my drugs so that the RA does not put me in a wheelchair. Last Christmas I could barely walk, get dressed etc, the rheumatologist gave me a steroid injection and I was back on my feet within days. I've had nothing worse than extra headaches with the drugs, rather have headache than lose my joints. Read all the discussions on this forum, it is full of useful information, hints, tips and support for you. Look after yourself and good luck. Susie.

  • Thank you

  • When I was diagnosed I too was scared about taking medication all the time too but then I chatted to my sister in law who is a physio and she said the people I see with RA with the worst problems are those who don't / won't take medication and that scared me even more. As Mrs SW said side effects are rare, but unfortunately it is a bit of trial and error to find the right combination for you. By all means try diet in combination with medication but think very carefully about refusing medication completely, RA can very quickly cause a lot of damage and deformities if left untreated.

    These articles are quite useful

    arthritisresearchuk.org/art...

    arthritisresearchuk.org/art...

  • Thank you, I will take a look at the articles

  • Hi Lyndak

    I absolutley agree with MrsSW the side affects are rare when you compare to how they treat the RA and one thing i have learned from this forum is that all drugs affect people in different ways, You just need to find what works best for you but it can be a long slow process, I have been on MTX injections for 3 yrs now and can honestly say apart from a little nausea and tiredness its been a god send for me, I am also taking Hydrox and pain killers but to be honest id rather stick with that and the side affects which give me back some indipendence and normality in my life than struggle on with extreme pain and not being able to get out of bed in the morning.

    Wish you all the luck in the world

  • Thank you

  • I would discuss this with the specialist as he/she may be able to give you an assessment of how aggressive your RA is, and whether you have time to explore other options without risking permanent joint damage. For some it is possible, and lifestyle changes can work enough to keep things calm. It is lifestyle changes, not just diet - so you also have to consider exercise, weight, smoking, stress etc.

    For myself I was in such a bad way on diagnosis, practically bedridden and unable to sleep from pain, that there was no way I could wait as my life was hell. My main fear was joint damage. What I did was work on lifestyle changes alongside taking the drugs. I have no evidence, but I think it helped me tolerate the drugs with no long lasting side effects. 6 years later I still have no side effects from the drugs (triple therapy) and am generally in remission. Over the last year I have been able to reduce doses of drugs with no ill effects. (Unfortunately in the last two months I have started to flare again, but that's another story).

    So think about it carefully. Joint damage is permanent, and uncontrolled RA can cause problems with eyes, heart and lungs. But it is a personal choice and you have to do what you feel comfortable with.

  • Thank you

  • Thank you everyone, I will listen to the specialist as you advise,. I'm seeing one today. Apart from my hands I feel well. I've stopped smoking two months ago anyway before I was diagnosed. I'm eating healthier as well. I'm also thinking positive.

  • Thinking positive is very important. Especially if you do decide to take drugs.

    You may have heard of the placebo effect, where people respond well to sugar pills because they believe they are being given a "real" drug. Our minds are very powerful! Well research has shown there's also a "nocebo" effect where if people think they will get side effects from a drug then they are much more likely to get them - even if they weren't given the real drug. Over 70% of people respond well to the drugs with no problems - so no reason why you couldn't be in the 70%.

  • I hope so. Thanks for your reply

  • Lynda's...please don't try to understand RA drugs until you have seen a rheumatologist & talked things through with your rheumatology nurses. You won't read much about how great they can be, but a lot about grim side effects, which most of the time don't happen & if they do your doctors will change your meds....they don't just let you suffer........but you have to be proactive with RA & tell them if a drug does not suit you.

    It is very tempting to decide you have the willpower to stick to suggested diets to cope. Sadly diets do not prevent joint damage. By all means eat what you feel will help....but seriously listen to the doctors & nurses when they explain why Dmards( disease modifying anti rheumatic drugs) really are necessary.

    I have had RA for 18 years....pain made me take every drug thrown at me...some great- some awful....but here I am happily settled on a Biologic & better than I have been for years.....very little joint damage & no obviously deformed joints.

    So have a list of questions for your first consultation with the rheumatologist, & if possible take somebody with you......as you will probably be given a lot of information to digest & I know I only ever remember half what my Rheumy tells me!

    Hope it all goes well

    AC

  • Thank you for replying. My husband is coming with me. I have so much to ask and fears as well. Also, there are so many out there with well meaning advice about taking medication. I actually know someone who was bedridden and has managed her RA with diet and never taken meds. Then I come on here and see what everyone is saying. I am quite confused to be honest and don’t know what to believe.

    With me feeling so well I don’t want that disrupting either. I am a very positive person generally and want to stay that way.

  • If you've been diagnosed already (by your GP?) before seeing a specialist, I'd hazard a guess that you had positive blood work markers for RA?

    If so, the experience on this forum seems to be that you're likely to be a good responder to DMARDs. (There's some on-going discussion about differences between people who are +ve for markers at the outset, who convert later, or those who never show positive blood work markers - and their different responses to treatments. But, that's not relevant to you right now.)

    Good Luck with the specialist appointment.

  • Yes I did get positive blood results and it strongly indicated I had RA the GP prescribed me Leflunomide but I haven’t taken it yet. It is a biological drug I believe. I am waiting to see the specialist

  • It's immune-suppressing but not the class of drug that is known as a biologic (those are horrendously expensive and therefore used in limited cases and for those for whom DMARDs have stopped working (for example)).

  • I'm not doubting what you understand about this person....but was she actually clinically diagnosed by a rheumatologist & how long ago?

    Believe me - everyone here would eat rat droppings if they thought it could 'cure' RA....we don't take strong drugs lightly, but because blood tests show the rheumatologist we need them.

    Even Private Medical Insurance regards RA as incurable & won't cover a lot treatments prescribed for the condition.

    This wretched disease can lie dormant then pop up again years later & by then joints are damaged. I preferred to take the Dmards & protect my joints for as long as possible.

    I can no longer play tennis...but I can walk a fair distance & still wear pretty shoes......so I am happy with the path I took.

    But as I said....discuss things with your doctors.....but if at all....possible don't get hooked on Prednisolone, you will read here how it lulls you into a false sense of wellbeing & it is very difficult to wean yourself off it.

    Let's hope you are one of the lucky people who get relief with no side effects from the first drug you are prescribed.

  • Thank you. Yes my friend was bedridden and diagnosed when in hospital. I am listening to all your advice and I will be sensible.

  • I get the gist of what AgedCrone is saying here but I do disagree in 'don't try to understand RA drugs until you have seen a rheumy'. On my first appointment with a rheumatologist I already knew the drugs I was willing to take and ones I was not. There is no harm in educating yourself. For example as a 30 year old woman with no children I didn't want to take MTX. I also knew I was ok with trying Sulphasalazine.

  • I did my research as well TerrilouiseS. I want to know whats going inside my body.

  • Hopefully you will be one of the lucky ones, a mild case and respond well to the meds. I was on MTX for 10 years, and I had two side effects, hair loss and nausea the day I took it. And it wasn't just my imagination. RA is very individual, every case is different, and every person responds differently, every person progresses differently. You just will not know until you begin treatment, how your RA is going to react. I tried diet, eating clean food, all sorts of things. And it had zero effect on my RA. I've heard others have good success with just a diet change. but its not a cure. And it can change on a dime. My RA was very well controlled and well managed for 10 years.....then it all changed. The MTX had scarred my lungs, and I was diagnosed with RA-Lung Disease aka Interstitial Lung Disease, and I am now terminal. It is progressive, the average life expectancy after diagnosis is 4 years, depending on how quickly one progresses. I have it in my lungs, my heart, and my eyes. What most don't really understand is that technically, RA is NOT just another type of arthritis. RA is an autoimmune disease wherein just one symptom is swelling in the joints. Yes, its the most visible symptom and one that most RA'ers have, but it is still just a symptom, it is not the disease. RA is systemic and can affect any organ system in the body. As soon as my lung disease was discovered, my Rheumy snatched me off the MTX immediately. I am now on Humira once a week. I am also prednisone dependant. I can never stop taking it, and I am on 20mg a day. If I go more than an hour past dosage time, I begin to run fever, my lungs swell, and I can't breath. RA is a very serious disease, that does not get the respect it deserves, and only those of us who have it, really understand what its like. Check out rawarrior.com it is run by Kelly who is an RA-non-responder (she doesn't respond to any of the meds except prednisone and she suffers greatly). The web site is probably the most indepth and comprehensive site for RA on the web, with literally thousands and thousands of comments, articles, and information about RA, from people who have it. Good luck, listen to your doctors, but also listen to your body. And be well!!

  • Thank you so much and I'm very sorry indeed for what you are going through.

  • I'm terribly sorry too for what you're going through, you poor thing. But, and sincerely no disrespect, Chronicstitcher, that is a rather scary response for a newly-diagnosed & confused person like Lyndak to deal with. I am only a little further on in my journey, but perhaps I am lucky with my medics, for my GP is very supportive, and the specialist Rheumatology nurses were very thorough with info, also made forward appointments even before I had started treatment, and have stressed encouragement to contact them at any time, about anything. We can leave a message & they get back very quickly. Good luck & God bless everyone.

  • Thanks so much

  • When is it an appropriate time to be well informed about our disease? I wish I had been informed, and not be blindsided the way I was. It was far too late then. Yes, it is scary. But I can't sugar coat it. We need to be talking about the realities of this monster. People, even "newbies" NEED to know what can happen.

  • I agree, we need to know & understand the ramifications of this life changing disease! I was so bewildered & confused like Lyndak, so I set out to research every blinking aspect of it "good or bad". So that I could make an informed decision & choose how I went about getting the best out of life & not letting this giant gorilla of a disease consume me! I have come to the conclusion that the best course of action for me was to accept the help from my physio & OT, & have a trial on all the drugs recommended by my consultant (you can when all said & done come off them if you feel they are not right for you) but at the same time run concurrently with a healthy eating plan (mine is slimming world) & fingers crossed after 5 weeks on MTX & SFZ I am beginning to actually feel a little better! So, basically Lyndak I would say tailor your drug & healthy eating journey to your own personal needs, while at the same time taking onboard the advice from your RA team.Good luck to you xx💕

  • Thank you Julia. I'm doing everything you've mentioned and apart from first thing in the morning I feel good. My hands remain painful but I'm almost getting used to it. I've cut out dairy, bread, potatoes etc and eating much healthier. I take loads of supplements as well as apple cider vinegar which was recommended to me. Onwards and upwards and I won't let the b.....d get me down

  • Hi Lynda i also take daily vitamins D & B12 plus omega 3. I too have very painful hands, it seems to start there first! I was ok for a year after diagnosis & like you didn't want to take anything! But I have to say it then turned very aggressive so suddenly it took my breath away & destroyed some of my fingers, one thumb, wrist joints, & my knees & toes were bad too! I suddenly couldn't get out of bed I was so ill & thought my life was over so do be careful. I have a friend who after a year on the drugs, Methotrexate & a biological called Embril has gone into complete remission, she hasn't had a painkiller now for nearly 4 years! That is my ultimate goal! At the moment I am on just Methotrexate & Sulphasalazine with steroid injections as required & after nearly 5

    Weeks I am now noticing an improvement! I was vehemently against drugs, just like you so you need to monitor yourself very closely & not let the disease get too much of a hold on you. Good luck to you & yes fight the b.....d all

    The way! Xx💕

  • Thanks so much. At the moment I'm on methotrexate and folic acid and anti inflammatory meds. I'm scared of it getting worse so decided to take it

  • Ooh that's good, how long have you been on it? I'm on week 5 & have to say the side effects are disappearing & im beginning to slowly feel better although it's a slow process I think & I am not the most patient person 🙈

  • I have just this past weekend taken my third dose. So far no side effects I'm aware of yet. My mouth a little sore where I have implants but that's it. My hands are still not brilliant but not as bad as before

  • Hi Lynda, we are running practically parallel I had a few mouth sores but they upped my Folic Acid & they have cleared up. Felt horrible today though, took my 5th dose of MTX last night & feel like I have been hit by a bus today, so it's a "dressing gown day" today! I see a consultant tomorrow about the wrist damage, plus my physio. I also joined Rheumatoid Airthiritis in the Uk a Facebook group & learnt quite a lot off there. We must compare notes & I also do Slimming World. Take care x

  • Oh no, I'm so sorry you having a tough time today. Yes we are running neck and neck. I'll look for the Facebook group. We should connect!

  • I found the group!

  • Lynda, I'm so sorry you have to face this disease and be in pain. Everyone here knows what you're going through. I did have about a year where I didn't take drugs. All I can say to this is when you can't take any more pain you will take drugs (I hate them). Better to have knowledge about the drugs you are taking and prepare for side effects. There are many options out there, be open to them. Joint damage is not something you want. It has taken me about three years but I have researched diet too, I don't drugs alone work personally so I don't eat diary or yeast. I have also given up alcohol recently and I know I have to have at least 8 hours of quality sleep. I have swapped gyms for cycling and working out at home. Yoga is good too. There is lots you can do (scratch that, need to do) for yourself to reduce inflammation. Medication doesn't work alone (for me) and to avoid more medication I do the above. It's a journey and I wish you the best of luck with it

    Terri x

  • Thanks so much. I too have cut out dairy, red meat and potatoes. I have also cut in more than half how much bread I have. I take apple cider vinegar every day, loads of vitamins etc and the only thing I don’t do is massive exercise apart from swimming each day.

    I am slowly coming to terms with the disease and try to not let others scare me. I know we are all different.

    I am sorry you are facing it too, especially at such a younger age than me. by the way, I am only 30 inside my head ha ha ha.

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