hello again , no mtx

[lorrain]

hello again , i have been wondering this past week if it is possible to cope with this R A without medication i:e excersize , food and so on , i stopped taking mtx almost 2 weeks ago although im still taking hydroxy till i go back to rheumatologist in nov but i was wondering if it was possible to cope with this without taking medication or am i being silly or dreamining x living in hope still xx

[watson3]

Hi there,

I'm sure there are a lot of people out there who feel the same as you do.

I have always understood that after diagnosis the best form of treatment to prevent further damage was to stabilise the condition ASAP.

I think if you are over weight, losing weight is always good for you joints and your general health.

Good luck with your findings

Carole

[lorrain in reply to watson3]

hi thanx for your reply x

[allanah]

Hi Lorraine, I think we have all had that thought at one time or another. ,! I think personally complimentary medicine can be helpful, the safe ones!, but There is no cure for RA unfortunately but the drugs we are lucky enough to have these days help the swelling and pain, thus the joint problems which they used to get in the olden days are not seen so much now.

I wish we didn't have to take them but I do because I saw my dad so ill from RA and I don't have half those problems because of my meds.

But good food and exercise is obviously good for general health but unfortunately hasn't been proved to cure or controlbRA.

NRAS have a publication though on dietary advice of what has been research based foods or complimentary therapies which can be beneficial.

Wouldn't it be great to wake up one day though and them say they have found a cure!

[lorrain in reply to allanah]

hi allanah thank you for your reply yes it would be great if that would happen when i last saw my rheumatologist i was in so much pain i wuold of taken anything and i did also i didnt ask many questions either so i think i need to talk to them again cos i remember him saying i got r/a and connective tissue dissorder unknown when i asked what that meant i cant even remember what he said and i dont have any idea what that is or any clue as to find out im driving myself insane looking on the websites for answers or solutions im convincing myself iv got every illness going ha ha i know i must stop i go back to him next month so im writing down the ?s im also at my own doctors tues he did some tests on thyroids and such asto why my hair could be falling out , cos he dont want to believe its the mtx i dont no maybe i am lacking in some kinda vitamin i just dont no what yet , i know if it come to having that pain again i will take the mediction if i afto but i cant help thinkin if i can help myself without it i guess maybe im confused at the min and clutchin at any straw x

[allanah in reply to lorrain]

Being honest, I would have taken arsenic if it had helped and someone told me to do it! Ps don't do that at home lol, ye u need to chat to the Rheumy helpline, mine r good and will always rings back if I have a problem or didn't understand what they said! But just so u know at the beginning it can take A bit of time for them to get organised with your drugs, but it will get easier and things will improve with the medicine. And then you may be lucky enough for them to say to stop taking the medicine because you in remission Lol, now that would be good ha ha!!

[funkyfran in reply to allanah]

Has anybody tried any complementary meds/therapies? I mentioned Vit D 50,000 i.u. & got disbelief from NHS bods. I stopped taking MTX as I have been well for months (don't know if it was summer temps) with few aches & pains. I am living in hopes that I will be ok. I feel a bit of a fraud at the mo cos so many of you have awful pain & I have had virtually none since huge flare at the beginning of the year. I have just found out that I have OA as well as RA but nobody told me. Can you get these vitamin therapies on the NHS? Also, has anyone tried raw milk? Have bad stomach probs (pre RA/OA so unrelated issue) so trying to sort that out first.

Sorry I don't post/respond much as have memory probs too!

[HKFuey in reply to funkyfran]

Although I am a fan of raw milk and raw milk products from a culinary/gastronomy point of view! it is NOT appropriate for people with compromised immune systems (like us) and could be EXTREMELY dangerous.

[funkyfran in reply to HKFuey]

I was told that it was ok if I wasn't pregnant or planning a pregnancy (no way Jose!) Thanks for the advice but I believe the 'dangers' are exaggerated by the same 'vested interests' that promote mass vaccination. Caveat emptor!

[Kittykatxxxxx]

Hello I think it is possible to cope without medication if one is in non-medicated remission. If you realy can't take meds I would try and force it into remission with a strict anti-inflammatory diet/ supplements.What you risk is on-going damage though whilst you are trying. I do think it is possible though for some.

Personally mine is so severe I need the meds and I need to get some control over the beast. Take care x

[lorrain in reply to Kittykatxxxxx]

hello kittykat thankyou for your reply as i just said to allanah if it came down to it then i would take the medication we dont have much choice on that do we i gotta admit tho i havnt eaten healthy although i dont think im to much overweight and i dont excersize but if it was to help then im more than willing to change and do watever i can i also think i need some answers of my rheummy xx its hard isnt it xx

[Hidden]

Hi Lorrain,

Some people opt not to medicate but as there is no cure yet to do so is playing Russian Roulette with your health, out of control RA can do serious damage to your joints and affect the internal organs too. Hold onto the fact that you will find a drug regime that helps prevent joint damage without an unacceptable level of side effects - unfortunately this takes time and often steroid cover is required until the drugs reach an effective level in the body.

Writing a list of all the questions you need to ask is a good idea:-} If you have a rheumy nurse at your hospital then you may well be able to make an appt with them before your next rheumy appt. You can also phone the NRAS Helpline and they will do their best to answer your questions and concerns:-} Rather than Googling and scaring yourself, why not download some of the leaflets/ booklets on the NRAS site.

Keep posting and let us know how you are doing.

Cece x

[lorrain in reply to Hidden]

thank you cece i will keep posting x

[wiliby]

Hiya, I can't give you any better advice than you already have but just wanted to add that my RA was treated very aggressively and with that result had it under control within 11 months. This has been 2 years now and have NO sign of damage!

It was horrible going through all these meds but when they find the right combo for you then it will be worth it. I am on Enbrel now and even came off the MXT a year ago. Have very little side effects

Just a thought, but naproxen also caused my hair to fall out (of of the side effects apparently)

and, my niece has connective tissue disorder, they tested her for RA first but thankfully negative. Has something to do with double joints if I remember right? would you like me to get some info from her?

[lorrain in reply to wiliby]

awe thank you i would love any infortmation i can get would be great thank you avnt no clue myself

[Ronnie63]

Hi Lorrain

I suppose the answer partly depends on what the motivation for stopping is

When I Was first diagnosed I had no damage, 20 months on MTX and Hydroxy, still no damage. That's the most important thing to me. Yes I have less hair but still enough, have stopped Naproxen to see if that makes any difference. Am waiting to go onto biologics so over time will have less MTX, have tolerated the drugs well. I think I read somewhere about the window of opportunity when we first have the onset of symptoms and most damage being done in the first two years. I remember feeling anxious to get on with taking the drugs and treating it as aggressively as possible to give myself the best chance of not being badly affected by it in the long run, especially given the drugs are improving all the time. I think I would be more minded to try natural approaches if I could definitively see what impact they were having (positive or negative) so I could make an informed choice re my treatment. With RA I don't believe that is truly possible as much is hidden. But hey that's just my perspective and you need to have the conversation with your rheummy next month and possibly the helpline in the meantime?

I wish you well with your deliberations xx

[lorrain in reply to Ronnie63]

hi ronnie thank you , as far as i can iunderstand at this min ( and im no expert on anythin i know but im trying to understand things more ) is i have connective tissue dissorder that could become R A due to swelling of some of my joints and the pain i was in but from what im reading ther isnt enough evidence in my test and they dont actually know what it is although im being treated as if iv got r a but im kinda thinking how can they know how to treat me if they dont know exactly what it is but maybe im clutching at tiny straws here as at the beginning i was so in pain i probley didnt take much of the information in dont get me wrong i am gratefull of my rheummy team and everybody else who has helped me but if there is a way by changing my lifestyle will make things easier then i would do that if not then i will have to have the medication but i feel i need to know more x how can i be treated tho till they no wat they are treating x

[Ronnie63 in reply to lorrain]

Hi

I completely understand and hope they reach a firm conclusion as to what it is without further delay xx

[lorrain]

thank you ronnie i am going to try tho the rheumy nurse has told me i can always go back on mtx at a later date if i need to and i will if other things fail x

[Angela123 in reply to lorrain]

Hi Lorraine. We've spoken before about the MTX hair loss. I came off it at the end of August but within weeks the pains were back much worse. I'm trying Sulfasalazine now and am resigned to the fact that the meds are the only sure way to go to control this nasty disease. I have no idea yet if this drug will affect my hair (which is improving a bit and growing at last) but I am making a good effort to look after myself too with a healthy diet a multivitamin, very little alcohol etc. I think this must help, but getting the RA under control by whatever it takes drug wise has to be the priority for our long term health.

[lorrain in reply to Angela123]

hiya angela yes u are probly right lol x im not gonna take mtx tho if i can help it at the moment im ok fullof a cold mind you think thats due to the weather and the heating being put back on i am goin back to the doctors on tues cos he did a thyroid test in case its that that as caused hairloss i brought a yoga dvd for beginners today and was suprised i manged to do alot of it i have read only on the internet tho that some people do manage to live without drugs maybe im wishful thinking lol x but honestly if it asto be drugs then that wat it asto be then well gutted xx

ps hope ur doing well glad your hair is growng back x

[calflo]

Hi Lorrain, I am new to this group and was diagnosed with RA in Dec 2010. I put off going on any medication until March 2011, when the RA consultant advised me that it was time to go on medication to avoid further damage to my joints. I was put on methotrexate in March 2011. Since March 2012 I have been attending they gym and eating more healthy resulting in 2 stone weight loss. My last flare up was in May 2012, and I firmly believe that exercise and healthy eating has contributed to it. That said I too have thought like you, could I do without medication? I sometimes take a week or two off medication, if I am going on holiday, or celebrating (increasing my alcohol intake) and I have still managed to avoid a flare up since May 2012.

[lorrain]

hello calflo welcome , thank you thank u thank you i was put on methotrexate think it was feb or march yes i was gratful for at the time was in alot of pain i didnt know much about r a and i still dont remember much of what was said to me at the time my letter said connectective tissue dissorder when i asked my doctor what that meant i think he said it meant there isnt enough evidence in the test to fully diagnosed r a but my symptoms show the signs or words to that effect , i go back on tues to see him so will ask him about it all again cos if there is any chance or way of doing anything to help myself to live without drugs then im going to at least try and find away with the help of my doctor and rheummy team i dont no maybe at the min im wishful thinking but i know i got to at least try

ps im gonna try swimming again to aswel last time i went it took me ages to get in the pool and wen i did get in i cudnt move my arms to swim and it took me ages to get back out of the pool ha ha xx untill i go back to the rheumatologist next month i will take the hydroxy still maybe he mite tell me i dont need that then either oh i wish x

[francherry]

Hello lorrain, everyone has given good advice. Just to reiterate that if it is definitely RA then taking the drugs to get to drug-induced remission is the best, diet alone can only do so much. Another thing - I have a connective tissue disorder as well as RA but it is genetic - Ehlers-Danlos Syndrome type 3 (hypermobility type). There are overlaps with Hypermobility Syndrome - both involve being double-jointed etc, but a key difference is that local anaesthetic doesn't work if you have EDS). Let me know if you have any questions about that. I hope you get the answers that you need from your rheumy team.

[allanah]

Good luck tomorrow, let us know what they say xx

[lorrain in reply to allanah]

hiya allanah its only my own doctor im seein tomos not the rheumatologists , i had some tests done last week for thyroid and vitamin deficiency see if thats the cause of hairloss but will still let you know x

[allanah in reply to lorrain]

Good luck xx

[lorrain]

Hello people , just letting you know i saw my own doctor today and he said yes he thinks it was the mtx he was very supportive and as made me feel hopefull iv decided to see how i go on without medication im still seeing my rheumatologist next month thank you all for your support i will keep updating xxx

[Angela123 in reply to lorrain]

Best of luck Lorraine. You will get your energy back without the MTX and your hair will pick up in a couple of months.

[lorrain in reply to Angela123]

Thank you Angela I'm gonna give it my best try x