Rheumatoid arthritis no medication

I've had ra for 3 years now. Was on every meds imaginable nothing seemed to help. Now on no meds. Trying to eat healthy. Anyone not on any meds for ra and what do you do for your pain?

Thanks for your input!

[oldatwenty]

Hi! Wow, that's crazy. I was just diagnosed with RA and got started on mtx. I think I've seen a small improvement but I'm waiting to see if it improves more and if it's worth it, since I am left in a mild but permanent state of nausea. I hate meds, and have really been trying to change my diet as well, and kind of hoping that it will improve things drastically and I won't need meds. It's a hard call. Many people will tell you that you are being irresponsible and the RA can wreak havoc to your joints if you are off meds. And they are not wrong. But that doesn't mean there is no hope to control the disease naturally. (food, meditation, yoga, relaxation) I wish I had a magic potion... I've gone off sugar and wheat, kind of trying to avoid nightshade vegetables, milk and red meat, and eating lots of fish and veggies. I do feel good, but it's hard to gage how it's affecting my joints, as I'm on the meds at the same time, and the improvement is extremely gradual. I have also started a mindfulness course to help mitigate stress which causes inflammation. Wishing you the clarity to make the right decision - and that whatever you do decide should make you feel better! Please do keep us updated and let us know if you do see real improvement with your diet changes - I would be really interested to hear.

All the best,

Noa

[Mistydawn in reply to oldatwenty]

Hi Lilly123,

I agree with Oldatwenty. I too follow a diet free from processed sugars, processed foods, gluten containing foods and red meat. Being a vegetarian I also avoid fish but fish is meant to be food for us. In terms of the nightshade family, my nutritionist suggested to only avoid potatoes as she believed the rest of the nightshade family did not have a detrimental effect. In my experience I would say that if you do avoid red meat then ensure you are getting sufficient vitamin B12 - I am undergoing tests for pernicious anaemia as my blood B12 levels are low. Also, ensure you are getting enough vitamin D and calcium in your diet for keeping your bones healthy.

Finally, try to avoid stress and being around stressful people as much as possible (easy to say sometimes). I learnt the hard way, back end of February, I went through an extraordinarily stressful period and low and behold, I had an almighty flare for two weeks during which time nodules formed around joints of my thumb and forefinger.

Take care

Usha x

[Hidden in reply to oldatwenty]

Oldattwenty - I think it's very different at your age and taking these drugs, combined with as healthy a diet and lifestyle as possible will be your best chance of having good, pain free middle and older years. It took six months for MTX with Hydroxy to control my RA. The first few years are supposed to be critical for joint erosions to be avoided so please listen hard to your rheumy and carry on taking the meds as advised. A good diet and lifestyle will only help these drugs to be effective - very important too! X

[Cornishrex]

My brother in law has ra and uses diet only to control it. They follow gluten free etc. the doctors are apparently amazed at how little joint damage he has had over that time. I don't know about pain management I'm afraid. I know he drinks of alcohol being a confirmed Irishman.

I'm also currently not on meds but that's because I dont [yet] accept that I have ra, 4 months of MTX made no difference at all to my sore feet, and I've now been off it for 7 weeks to see if the MTX really was doing something in the background that I hadn't noticed. Not yet. I occasionally take paracetamol. But I don't have any inflammation according to my bloods, or joint inflammation / damage according to ultrasounds. So if I did have it, I'm very early.

Good luck.

[halaahmed]

That's interesting to hear. I'm on MTX and plaquenil and the improvement is very little and gradual. I decided to have a gluten free diet to see if it can help with the meds. We need you to update us with the results to see if the meds are really worth it.

[cathie]

I can't let this go. RD is a very serious chronic disease and without meds will rampage through your body. We all have a choice but people reading this need to bear in mind the consequences of refusing treatment.

[angel-delight in reply to cathie]

Hi Cathie,

I seriously agree with you, I am worrying what is happening with my joints whilst waiting to start new medication Tocilizumab infusions. It is taking ages

due to the TB test failure - quality assurance. I have had all the necessary tests which are fine, I am now waiting for another test with the Respiratory

unit at the end of this month. In the meantime I am having to deal with flare

ups and being stressed because I am only taking painkillers and steroids which the doctors feel is the reason behind the TB test failure.

You really need to listen to the Rheumy experts.

[Hidden in reply to cathie]

Cathie I entirely agree with you I watched my mother refuse medication on the grounds that diet and taking thought might be the best course. She very rapidly pretty much lost the use of her hands ,had two new hips and knees and still could only walk with a zimmer.

[clancy58 in reply to cathie]

But the treatment impacts on your life do much and I have now become frightened of doing the injections due to bleeding and bruising!!

So was asked to take leflunomide also a horrid drug!!

[Hidden]

i try to avoid strong ra medication to me its madness to allow the strong chemicals into my body when they seem to have little effect and make people so ill i know i must move on fro m this mind set at some point ,but fear holds me back at 60 i should know better its a difficult condition and we are all different

[skinnycappuccino]

Good morning!

I have to say I agree with Cathie 100%. If diet helped then I doubt there would be a need for a forum like this! I eat very healthily (a Mediterranean diet) and I'd say it hasn't helped with inflammation but it helps my overall wellbeing. I don't believe in cutting out entire food groups without good reason (except if you're allergic or intolerant of course).

But I can also understand you're fed up after three years on meds with no improvement! It took over 2 years for me to get the right combination of meds to achieve remission (Simpon and Leflunomide). I assume you've tried biologics as well?

Are you still seeing your rheumy and is he aware you're not on meds anymore?

I don't mean to be negative, I'm just a little concerned!

All the best, Christine xx

[Hidden]

My take on this is different because I'm extremely intollerent of drugs. When my RA started over four years ago I decided the first thing I had to do was to lose weight as I was almost obese - the strain on my load bearing joints was my main focus even though hands, wrists and knuckles were as bad as my knees. So I dropped gluten and refined sugars immediately without doing much reading - just enough to be sure this wouldn't harm me. By this time I had tried Sulfasalazine, methotrexate tablets and was taking MTX injections and Hydroxichloraquine.

With the pain, anxiety and no gluten I lost a lot of weight, tried three DMARDs over three years and then failed to tolerate all of them despite my very best endeavours to stick with them.

Meanwhile I exercised using my Nintendo wii for plus every day for 30/60 minutes. I used the yoga programme, the muscles, balance and aerobics as a mix. I even took up zumba, dropped dairy and lost about 4 stone. If individual joints were bad I tried to leave it a few days to rest. I walk the dogs most days unless I'm too ill.

Then I stopped MTX injections and Hydroxy with my rheumy' support because of intolerable side effects last June and haven't had a joint flare since. Instead I have had an increasingly widespread neuropathic pain, now up into my jaw, nose and teeth, long periods of unwellness, flu leading to pneumonia, dizziness, loss of sense of taste and smell, muffled hearing and nose bleeds and complete loss of appetite - despite eating all "the right foods" when I can be bothered to eat at all.

I start a new DMARD later this week called Azathioprine - it is a stronger immune suppressant than MTX and I wouldn't be trying it if I wasn't so tired of feeling sick.

RA is not just a disease of the joints and you can't always tell when it is being destructive. For some of us it is more systemic than it is for others and i'm one such. My ESR goes down when my immune system is suppressed.

I feel instinctively that it was the dropping of gluten (and I don't have full Ceoliacs) and taking two DMARDs early on which really helped me keep my RA down but I have a broad spread of inflammation so diet alone isn't going to be enough to prevent inflammation it seems.

Interestingly someome on the lupus site said that a gluten free diet appears to change the autoantibodies from positive to negative. This makes sense to me because I started with a positive rheumatoid factor for a few years which last checked 18 months ago was down to equivocal. So eat lots of white bread and takeaways and sugary drinks and pile on the weight if you want your RA to show up in your blood perhaps?!

Seriously I do believe that a good healthy diet can help all autoimmune diseases a great deal but whether this is enough in itself without the drugs? - I haven't found it to be I'm afraid.

I think it all depends on the nature of your RA and some of us need to find this out for ourseselves before we can accept the need for powerful immunesuppressant drugs. I have a cousin with RA who manages well without drugs as far as I know. This post has prompted me to contact her and I've learned that she probably has PsA but possibly RA. She tackles it through diet (Palio) and Ibuprofen but after five years it is progressing and she is going back to see the rheumatolgist and is hoping to be prescribed DMARDS therapy now as it is affecting her mobility. She is 48.

My rheumy supported my own quest to do without RA drugs for a while once we had established that mine was a relatively non erosive type - after 3 years of DMARDs . This is very important! Getting to know the nature of your own RA and accepting it is crucially important I feel. RA comes in so many forms with so many crossovers that it isn't helpful to be too black and white about the need for drugs. It can be slowly destructive rather than aggressive - and if you know yours is the former then this can buy you sometime to experiment with non drug related treatments if your rheumy understands and approves - usually about 3 years in.

Regarding pain - the amount of pain doesn't always correspond at all with disease activity - some with Fibro feel pain much more acutely than those of us who have always lived with pain of some sort or other. This is why only an experienced rheumatologist can work out if pain = destruction or not. If not then pain isn't a reason to agree to taking DMARDs although it helps psychologically. And just because you aren't in much pain it doesn't mean your RA isn't active - as I have learnt for myself recently.

[Hidden in reply to Hidden]

thank you for this information I have found it very intresting

[petalnumber2 in reply to Hidden]

I have just read through Twitchytoes response to your questions of going without drugs and using diet to help control your RA,and I found it very interesting, informative and easy to understand. I have just written a piece myself entitled "Decisions, decisions" because I am in the middle of a dilemma myself.

I know that this thread of messages took place 3 years ago, but nothing much changes for anyone who has RA. Most of us seem to go through times of reluctance to the drugs we take and look for alternatives. This site helps all of us keep the drugs question in perspective and answers so many other questions we have along the way.

I hope you are doing better Hidden. All the best to you. June xx

[helixhelix]

It's hard to have a disease that is so variable, as what works for some won't do anything for others. But there are so many well documented histories of what happened to people before these drugs were available and it's not fun reading, the distress, damage and pain were extreme. And quite a few people (like Edith Piaf) ended up dying young partly as a result of using alcohol to control the pain. Let alone those where the constant inflammation affected their hearts badly.

But if you get it later in life, and it's a mild form that's not erosive then perhaps you can keep a quality of life without drugs. And it is a personal choice, as long as you can manage independently.

I certainly find that my healthy eating & living has made a big difference, and has really helped me tolerate the drugs without problems. And I see little difference between taking painkillers and the disease modifying drugs - they are both chemicals so I prefer to take ones that have a longer term affect. But I dread life without drugs whichever sort as they are lifesavers for me!

[nomoreheels]

It concerns me when titles like this appear. True, RD can have very many different faces, differing severity at onset but it is a chronic progressive disease & if a Rheumatologist considers it necessary to treat you then all you can do is make your decision based on his finding, the specifics of your disease will be understood if they've been explained. Some people don't have as acute symptoms as others, this doesn't necessarily mean that they won't become more severe once the drugs have left the system. It doesn't only affect the joints, it's more sneaky than that & will given time affect connective tissue & that's when things can really turn & affect the vital organs.

How would flares be controlled, they'll surely happen & unmedicated would be damaging. Over the counter pain relief won't touch the pain & nothing you could buy at a chemist or herbalist will stop progression. Diet is helpful no doubt about that, but diet alone won't halt progression.

Have a look at images of people who didn't have the opportunity of the meds our Rheumies have available to them today then look at your joints & question if you'd prefer to not take meds. These are only outward signs, so extend the search & look for images of internal damage too.

You don't say which meds you've tried but I take it you must have tried biologics as you say you tried every med imaginable. I'm wondering if you lost faith in your Rheumy, he/she won't have given up on you so wonder what brought you to this decision. What were his/her thoughts when you decided to go med free? We have to trust in our Rheumies, it's not an exact disease, over 200 variations & so sometimes a little suck it & see is necessary, sometimes multiple times if it's particularly resilient or severe so if you've not exhausted all options I would keep on keeping on & one will eventually fit your particular variant of the disease. The options aren't an option in my view. If I hadn't had faith in my Consultant & listened to him I wouldn't have understood or believed that MTX as my only DMARD would work having tried it with HCQ & taken a downward turn so it also depends on the mix of meds, certainly in my instance, 6th year of taking it now, only recently needing an increase.

I hope you understand this is of real concern, potentially unsettling for newly diagnosed members & possibly others silently wondering if their meds are in fact working but who don't post on this great site, a supportive site & I have tried to give my honest thoughts when answering your question.

I'm pretty sure you'll receive lots of replies, some in support but many more questioning as I have but I wish you good luck for the future whatever your choice.

[Hidden]

My question would be what happens when you are diagnosed with other diseases and the food that you have removed from your diet are the ones tgat help your new disease, what are you going to do then? Since July of last year I have been trying of I have two more diseases t which when you look at the 'diets' one thing is good for one but bad for another. F you list all the foods that are tolerant of all the diseases I have then it's a very poor limiting diet, which would in itself not make you a healthy person. It wouldn't even help if I changed to being a vegetarian as loads of those foods are unacceptable to one but not to another. For me it's pop the pills and inject to live a reasonably normal life. Therefore I am in total agreement with Cathie to stop taking meds is to play fast and loose with your life.

[Hidden]

I agree with helixhelix. There are some people who do not seem to need drugs. I work with a man who had RA for about 20 years, with some very nasty flare-ups at the beginning. He's now off drugs with his rheumy's blessing and doing okay.

I've also know one person with PsA who's been diagnosed for 10 years and doesn't take drugs. Her joints hurt constantly but seem to be holding up fine.

So yes, there are some whose disease does not seem to destroy joints. Or whose disease goes into remission. And of course these individuals could, if they felt so inclined, claim that their joints had been protected by using anti-inflammatory spices in cooking. Or eating ice cream, or watching re-runs of Monty Python.

Unless we, and preferably our rheumies too, are really, really confident that our version of the disease is not going to wreck our joints and /or lead to any of the often serious co-morbidities, the drugs are the only things that can offer protection. Joint damage can happen quickly but it can happen slowly and imperceptibly too.

A good diet is vital. Exercise is extremely important. The body needs to be as strong and healthy as possible to stand up to the disease. But that is not the same as saying that diet and exercise can stem the complex disease process.

lilly, I hope you do well. But please be careful and keep yourself well-informed about the disease. Incidentally, what I do for pain is exercise. Because it works pretty well and also because I don't like drugs. I only take those that I'm convinced I need.

[Hidden]

I too am not on any meds!! My Rheumatologist told me, at least I don't have any of the side effects! I couldn't tolerate any meds and can't have biologicals due to my lung condition. So, they have taken me down the pain management clinic route which helps with my pain. Worth asking for a referral and your GP can do this. Take care.

[cathie]

I'm so angry with the no drugs brigade. You should remember that many people reading this are just starting off on this horrible disease and don't have the benefit of your hard won insights. Of course it depends on what form the disease takes, but I've seen what RD can do without the benefit of the meds we have now, my mother had it for most of her life and the effects weren't pretty for anyone. Am going to shut up now on this thread.

[Hidden in reply to cathie]

Cathie I can understand your anger but it is unhelpful in this context because not everyone can tolerate RA drugs and not everyone has RA that is severe enough to need them forever apparently. I think it depends on how erosive your RA turns out to be - so that taking aggressive drugs at the start can be a good way to knock it on the head for a while for some people whereas others will find they need the aggressive approach to continue for the rest of their lives.

After a few years of RA there is no one solution fits all. In fact a lot is down to trial and error for many of us. No one is saying here that these drugs are just poisons to be avoided or that there are natural cures that work. For many drugs are an antidote to be treasured- but for some unlucky people they are can be toxic. Serious drugs for serious diseases.

It is a very emotive subject for you and for me in different ways but I don't think it is fair to shout and get angry when someone is simply trying to ask very valid questions about a very complex matter. Of course it is important to rely on the advice of a consultant rheumatologist rather than those who suffer from the many forms of RA, because each of us has our own subtle (or not so subtle) variant and not everyone who decides to stop taking drugs will end up like you or your mother.

[Hidden in reply to Hidden]

I agree with that TT, and I'm very glad that they don't.

[Hidden in reply to cathie]

Same with my gran cathie. She had it during the 1930s onwards until her death in the 1980s. Her feet and hands were terribly deformed. I don't know how much pain she was in, especially in the early days. It's only now I have it myself that I can understand. My hands and feet are also a bit deformed, as I only took NSAIDS for a while. It's only since being on DMARDS that my joints have stopped becoming twisted. I've had Sulphasalazine, MTX and Leflunomide over the years, along with NSAIDS such as Indomethacin, Brufen and Diclofenac. xx

TT, I think cathie is just concerned that those newly diagnosed might get an unrealistic picture of being able to cope without any drugs, and not bothering to get help when suffering. I know you have had such terrible problems with various drugs, I can understand that, but the majority will be able to cope with some of them and should be aware of what help there is for them. xx

[Hidden in reply to Hidden]

I agree but I still think it's better not to put people with tolerance issues into anti drug camps and use the word "angry" about them. It's a very fine line if you can't come onto a site and express frustration about drug intolerances without people being angry with you. As you say I have my own troubles with drugs and symptoms but I try very hard not to impose them onto anyone else because each of us is different in the way the disease will progress and how we will tolerate the drugs.

I always make it clear that this is me and always say that I owe drugs a lot. I think people who are new to RA and DMARDs need to read and learn from all sides of the spectrum and this includes learning from people who are using natural healing methods as well or instead of drugs. I think Helix and Postle2 have both put up very balanced comments on this post.

[Chalmers]

First post from me, I too have had RA for approx. 3/4 years. Was prescribed Methotrexate injections and was on and off these due to raised LFT and also started to badly effect my breathing, I only managed to have 6 injections earlier this year and I was so short of breath. I have always responded well to the steroid injections but these only last for about 5 weeks and I can feel all the old symptoms creeping back.

I have had a break from any treatment for a few weeks and hoped that I could stay this way, but I fear not. I have now been prescribed leflunomide and know I will have to start on this soon, reading the leaflet with the list of common side effects (may affect up to 1 in 10) does not fill me with cheer, but I just don't know what else to do. My hair has only just stopped falling out from the methotrexate.

I felt so much better after the steroid injection, I was walking like a twenty year old again and it felt wonderful to feel normal again.

I get so very exhausted with RA, it is embarrassing how much I want to sleep and the list of jobs around the place just keep stacking up.

Like many I wonder which is worse the treatment or the RA?

[nomoreheels in reply to Chalmers]

From personal experience my answer would be untreated RD! Sounds glib but there is no fun not having meds that do work, actually quite the reverse I was alarmed to see how much the disease had spread having only outwardly affected my feet at diagnosis. I had 3 months of no meds & never wish to be there again. Anyway, welcome Chalmers, I hope you receive the help from the experienced members here, you've chosen a good one to give your inaugural answer. It can be difficult in the early days especially if a Rheumy's choice isn't to prescribed quick acting anti inflammatories or steroids when you first start treatment on DMARDs, the time waiting for most to reach their potential must seem an age. Then add into the equation that not everybody responds the same to the meds & it can seem a never ending road of pain but more often than not changing meds or fine tuning ones showing some signs of improvement does work but many here are in that awful position so it's not a good overall view of how RD can be successfully treated.

It does sound as though you're not well controlled just now but please do try not to concentrate on side effects. You may not have any or what you do have is acceptable for the relief you receive from LEF so open mind & all that & let's hope it's the one that you respond well to. I'm one who responds well to MTX so just goes to show how different we all are in reactions to meds. An increase can alter my levels so it's finding a happy medium. Do bear in mind that the drug companies are duty bound to list every possible one so try to remember that otherwise we can convince ourself that we are having them! Anything you're unsure of just ask here, those who are on it or have been on it will respond if they can help. Fatigue is likely due to the break in meds & the longer you remain off them the more fatigued you'll feel if you're anything like me, housework can wait you'll understand that given time.

I hope you enjoy using the site & if you any questions or help ask away, we're a wealth of personal knowledge of all things related & even have fun sometimes with an off topic post.

Enjoy what's left of the Easter break.

[Chalmers in reply to nomoreheels]

Thank you for the welcome and advice, you are right I don't feel well controlled at all, I am all over the place. Had a course of hydrotherapy recently and felt good at the time, but once a week is ineffectual.

Fatigue took me over at the weekend and was asleep a good part of it.

Not got used to the site yet, thought that I had replied to a post, but now cannot find my reply or the post!

Again thanks.

[Hidden in reply to Chalmers]

Chalmers for some of us it is a tight rope walk I agree. I hope you post more often now you've done it once!

[Hidden]

Your comment was uncalled for

[danmar]

Hi, I hesitate to write this because I have a vested interest, but if it's helpful.. I know many people with osteoarthritis, but I understand that some people with RA take my company’s ‘Arctic-Sea’ fish oils because of their anti-inflammatory effect; the oils are taken from the body, not the liver, of the fish, and the fatty acids convert to a very high level of unsaturation. Some of these people also take one of the company’s Aloe Vera drinking gels (can be pain relieving and anti-inflammatory). If someone is on medication, they should check with their doctor before taking Aloe. I hope you find something which relieves your symptoms.

[Hidden]

Hi hidden, I hear your frustration with meds not working and

just feeling yucky.. I did the diet thing and still do so that I have

the best chance when medicine is put into my body. My body goes

through the shock of medicines that aren't very good for me just

the same as everyone else but I think that eating healthy - very healthy

makes recovery time much quicker to rid my body of those medicines

more quickly..I prepare for the medicine to invade by drinking lots of

water.. not tea, coffee, soda pop or soft drink or fizzy drink.. just plain

water with a spritz of lemon. It's my secret weapon to fight off side effects

of MTX and Rituxan. I just started paying more attention to it

and drinking water all month long really helps...

My problem with controlling it by foods is that sometimes I fall off

the wagon and go nuts eating carbs like warm bread from

the oven with butter...I am a fool to get a good size piece of it..

Some items on fast food boards just call my name day and night.

I just have to have it or I threaten to go on a food strike until I

get it...a ground steak burger with mushroom and swiss cheese

just rips at my self control until I get it and God almighty do I ever

enjoy every bite of it...I eat it alone because I close my eyes when I

take that first bite and say mmmh, mmmh, mmmmhhhh... it

hits the spot.. and I might be still eating it 40 mins later... I take

bites of it at a time and pause.. I have my moments.. haha..

How does that all relate to RA? I escape from RA completely ..

Total disconnect from my disease to enjoy and savor those

moments.. I escape from pain completely if I have low to moderate

pain to beginning. Until I started in the pain clinic, I didn't know

how to block out pain for stuff like this.. I learned to block pain

with my mind..

I cannot stick to a diet that will rid me of RA like I could before

severe pain kicked in.. I can use lots of non food items to cross

the pain until I can get to the pain doctor or pain doctor..

The biggest tool in the toolbox is the brains ability to imagine.

That I had to learn on my own once I quieted down pain with

either pain pills or music (doesn't work as well as pain pills)

massage..back rub or other physical contract with partner..

Nuff said by me.. I've learned so much in just a couple of years

from my best online friend in the world.. I learned to quiet

the mind down a lot so I don't over-react when the little pains

come knocking. XX and ZZZ it's late, Karen

[noelkruse11]

I have been on MTX for 2.5 yrs and tried embrel, humira, cimzia, and orencia. Now I'm on actemra, I should be on my 4th shot but I've only had 2 bc I'm sick constantly a nd ca my take the shot when I'm sick. I've had one cold after another, I only feel good for a day or 2 before I get sick a ga in with another one. Then I got post infection inflammation syndrome in my lungs, I couldn't breathe. When they did the chest xray, no pneumonia but they did note significant bony changes in my spine from the previous x rays taken 17 months ago. I haven't ever been out of a flare in over 2 yrs, nothing has seemed to work. And now even taking all these meds weith the devastating side effects I still have progression of the destruction of my bones. I could see my hands curving but I never imaged that it was causing damage everywhere

[Marycullen in reply to noelkruse11]

Have you read the article about Actemra. I was on it twice and both times m y blood pressure went sky high. When I got off it went back to normal.

[mellie13]

hi guys, I am Australian. i got diagnosed with RA when i was 27 but back then there was no treatment other than painkillers or steroids for it, so for the next 35yrs i had nothing to help but Predisnone and Analgesics, currently on Tramadol which is opiate based. I wasnt given any information about this condition whatsoever except that i would end up all twisted up in my joints and probably wouldnt live past 50....which i have done. I led a very active life, doing bodybuilding and running (not jogging) and diving. Whenever it flared up i had to stop for couple months but then i would start again. At no time during these years did i ever have any checkups or anything from any doctor other than a GP who only changed my painkillers when they stopped working. I have also had several knee reconstructions on both legs, a wrist reconstruction and a removal of nodules which were painful. I am now in a wheelchair, unable to walk more than 10ft and have no balance becos my toes and feet are twisted up and i fall over. i also have nodules in my lungs which makes breathing difficult, but the drs still dont put me on any medication even though i know there is medication these days. Only painkillers and steroid injections into affected joints...currently spinal injections which hurt a lot. I am underweight and dont eat wheat at all, went off it years ago becos it caused more breathing problems (shortness of breath, lack gas exchange in my blood, ie my lungs didnt eject the carbon dioxide like they are supposed to do). i have only recently found out there is actually medication for this disease last year when a friend was diagnosed with it. I asked my dr to send me to specialist and this took 6mths before i got apt and then all he has done is put me on the elective surgery list for a total knee replacement in both legs. This he said will help me to walk again on my own but i doubt it becos now my spine is involved, to the extent that i have scoliosis and also kyphosis, bent both ways, like a snake from the side and same from the back, plus L3 L4 L5 vertebrae have slipped out of place. None of my affected joints have any cartilage left between them My whole body bone scan showed i have deformities in upper spine and neck, lower lumbar region, both knees, both ankles, all of my toes, both shoulders and both hands. Sometimes i go for a month and im fine although i still cant walk becos my legs have wasted a bit and i have no balance due to my toes not been where they should be as in a normal foot. Yet I am still told that i need no medication other than painkillers or anti inflammatorys which i cant take as they give me nosebleeds daily (thin blood I was told). To live like this for so long and in so much pain i think i was lucky to reach my current age of 62, but now i feel like i am over 100 most days. I dont qualify for any carer or home help at all until i hit the retirement age of 67 at which point the government will let me have a person to do my housework for free once a month. I live alone since my husband died in 2005 but my friends help me out for a few dollars here and there....going shopping for me when i cant, vaccuming my house when i find it impossible to even get out of bed etc etc. I havent worked since i was 45 and discovered i couldnt walk or stand anymore and Ive been on the disability pension since then which covers rent living expenses and my car which i need to get around to drs etc in, but soon i might not be able to drive either. SORRY for the novel ........... lol

[mellie13 in reply to mellie13]

By the way, my wheelchair is a manual becos electric ones cost thousands of dollars and i had to get a loan to get the manual one which is custom made for my now deformed body shape and adjustable for any future changes. I was told by the aussie gov that if i had parkinsons or multiple sclerosis I could have home help but rheumatoid arthritis doesnt warrant any help whatsoever unless ur on the age pension ......... ie 67 yrs old.

[ripecherries]

Hi, I have the same problem, have had RA for 13 years, was only on Sulfasalazine for 9 months and several steroid injections. This drug turned my skin yelliw and hair badly thinned, also made me feel sick and depressed. Then controlled my RA with Juicing. Everyday to begin with really helped. Bought a juicer , Carrot and apple, beetroot ,couple glasses of it daily. A couple tea spoons barley grass everyday in a drink. Takes a few months to see results but i have improved enormously. Doctors still want me on methotrexate but the side effects are too many and too serious.