Newbie

Hello I'm new here.  I was diagnosed with RA four years ago and immediately given a repeat prescription for Methotrexate.  I took the drug for a year and then decided to try to self manage as I felt more unwell than I had before I was diagnosed. 

I changed my lifestyle, diet and took up yoga and meditation.  I continued to have the monthly blood tests and after six months, my tests were clear and until recently, I've been very well.

For a couple of weeks or so I've had the odd day or two where I've experienced aches and pains and general flu like symptoms but without the fever, runny nose etc.  I've had to take a couple of strong Ibuprofen tablets to ease it but it bothered me so I went to my GP who advised another blood test the results of which came back clear.  However; I'm still experiencing the aches and pain and wondered if I'm having flare ups?  I'm not sure what a flare feels like really and I guess it may be different for everyone.

As my blood test was clear, it may be nothing to worry about, just a few aches and pains that come with the territory of RA but I thought I would share it with you as I would very much welcome your thoughts?

At the back of my mind, I'm a little worried about what could develop because I truly don't want to have to take any medication again as I've been doing so well without it.

I'm a great believer in mind over matter and most days when I'm in pain, I am fortunate enough to be able to mediate my way out of it but these symptoms I've been experiencing lately, don't seem to want to go completely unless I take a strong pain killer.

You can tell me if  you think I'm being a bit of a wimp! any advice or thoughts would be very much appreciated.

Thank you - Lozza

[3LittleBirds2]

Hi Lozza....Welcome to the site, you're post is great...well written and a great explanation, well done also for not having to take these toxic drugs.  I have a foot in both camps at the moment as I need drugs to try and get my severe RA under some sort of control but I'm alongside trying diet, meditation, mindfulness and exercise...hope fully soon to exercise as I miss it and it certainly helps!  There was a comment on here recently about people with RA should consider becoming gluten free which I totally agreed with so I'm starting the ball rolling!  I'm really hope that you're not having flares after having kept it under control drug free for so long but maybe worth a visit to your doctor if it continues?  Thanks again for your post and I really hope it encourages others with alternative ways of dealing with their condition to come forward and post in here! 😊  Good luck!

[Hidden in reply to 3LittleBirds2]

Thank you 😊 mindfulness is such a great tool isn't it? 

I hope so too. I'll stay positive and see how it goes x

[Hidden]

Thank you Kai 😊 I worked it out for myself after watching my Mum pass away from a drug related illness.  I agree about the balance of gut flora. I definitely have a better sense of wellbeing when my tummy is happy ☺ 

Learning to change the way you think about things has a very positive and powerful effect.  Thank you for your kind words. 

Will keep you posted 😉

[helixhelix]

That is so good that you've found a way to keep things under control, so I hope for your sake this is a very temporary blip. It strikes me that you probably hit upon a great formula, a year on strong drugs to get the RA quietened down and then focusing on lifestyle to keep it that way. Wish that would work for everyone, but great that it's worked for you. 

If there've been no particular stresses in your life that could have triggered off a flare, then it may just be one of those things. Especially if your blood tests were clear - which I presume means your ESR/CRP? And no inflammation markers also suggests nothing too alarming that could lead to long term damage.

As against that if ibuprofen does help then it does indicate that there was a bit of inflammation - as it works by reducing inflammation & therefore pain, rather than just being a painkiller. Since you've done so well on self management I'm reluctant to suggest that you think about mixing with drugs again, but it might be worth considering.   

I'm generally in remission (with many drugs, not a drug free one) but I do have flares. It's a choice as to whether you go for more anti-inflammatory diet or drugs, so I give you the alternative approach to Kai-Ans although there is a lot to be said for thinking about the microbiome. What works for me is a more effective anti-inflammatory than ibuprofen which I take at full dose for about 5 days. That usually knocks things on the head for a good long while. What you don't want is for this to start to take hold again so you end up having to think about DMARDs again. I try to avoid just taking one anti-inflammatory at random intervals as I've found that doesn't really have any effect for more than a couple of hours and ends up as a slippery slope to a big flare.    

[Hidden in reply to helixhelix]

Thank you ☺ I knew it was a good idea to join this forum. So many helpful thoughts shared which gives me much to consider 😊 

I think stress may have triggered this as there's a lot going on in my life at the moment. That said; I have all the tools to deal with it so I'll take a deep breath and step back for a while. Letting things go really helps and practising mindfulness and healthy distraction is also key to physical health too 😊 thanks for your advice. I value it and will let you know how I get on. 

[Ella61 in reply to Hidden]

Hi lozzapop, great to hear that you managed your ra with diet, I am taking that route too,it has only been 3weeks, so early days. Would you mind sharing with me what your approach was and how long before you felt an improvemen?. Than you 

[Hidden]

Thank you 😀 right back atcha! X

[Padram]

Hi lozzapop,  great news that you have your RA under control without meds. Am trying the same.  Trying to cure my gut and having success with it too.  But would love to know your method and what exactly you have been doing to keep it at bay.  Please share it so that more of us will benefit.  

[nomoreheels]

Hiya Lozza & welcome. Certainly stress can cause flares so maybe just stepping back, if possible, & concentrate on your health could help. Are you still under Rheumatology? If so it may be helpful to discuss how you are with your nurse, what we need to avoid is damage when flaring & if that takes a more reliable NSAID now & again or even a steroid injection if that could be considered an option, anything to stop damage? If it's only a pro tem solution whilst you get back to your normal lifestyle it may be worth considering.

I hope you enjoy being here. Take care.

[Dodo1943]

I too am a 'newbie' here but also a decrepit 'old bird' learning how to use a mini iPad so this message will be short as I keep losing my input before I can send it!  Memory is my worst concern as I forgot my password before I could write it down and my handwriting is now so bad I probably would not have been able to read it anyway! I also gave more thought to my identity so that now reflects the nickname a wonderful old dentist gave me in the 1950s and the respect I have for that profession in sending me to a GP after my checkup last December - but more about that later.

[jane1976]

Hi Lozza

I was diagnosed with RA 9 years ago, I was on methotrexate for a couple of years. Then I changed hospitals & consultant. I was so well my RA meds were stopped, I wasn't happy with this as previous RA people told me no way to totally stop my meds as, if my RA got out of control it would be very difficult to deal with. About 2 years ago I had a flare up with, various joints involved as a result I'm now on methotrexate, Hydroxychloroquine , naproxen & steroids yet, I'm still in a lot of pain! I wish I'd not changed hospitals & specialist! I think I will give mind over matter & meditation a go as, I can only gain from it.

[nomoreheels]

It certainly is not fun losing one's memory & mind. I'm concerned at such a comment particularly as Dodo is new here & shared with us it's her worst concern. I can assure you it's anything but for the person & their close family.

[Simba1992]

I think you may have an autoimmune condition that is still on a subclinical level. I had something like that for many years and tried the best I could to support my immunesystem with supplements but then after several serious infections my RA broke out. Now I have treated it it with AIP diet  and LDN + supplements and after 6mo  I am almost back to normal. I think it really would be an idea for you to look into ways to support your immune system and make it stronger so that RA wouldn't break out.

[Hidden]

Oh my goodness. Anyone who has RA is far from a wimp!! My hubby has only been ill for last 3 months and I've witnessed first hand how severely debilitating the pain can be!! It's beyond words to express. I am full of admiration for you. To have managed to wean yourself off medication and get back your life. Absolutely incredible and uplifting!! All I can say is go with your gut instinct. You obviously feel something isn't right. Keep insisting on blood tests!! Peace of mind. I will keep my fingers crossed that all remains well for you

[Hidden in reply to Hidden]

Thank you in fact, thank you all for your input.  I bought a book on Ayurvedic medicine today which is an interesting read. Basically it's about using plants and herbs that have been around for centuries and have as powerful healing properties as modern day drugs. I also bought some Devils claw and took two caplets and my pain has eased 😊 I've been walking around and resting today in equal measure and managed to get an hour of intense yoga in too which was good. 

When I'm in my own space and can quieten my mind and just 'be' I feel like I can conquer the world. Not taking anything for granted though. Time is precious and I'm grateful for every pain free moment 😊 

[nomoreheels in reply to Hidden]

Lozza, do make sure the one you've bought has the MHRA licence number on the label somewhere. Also check it doesn't interact with anything you take prescribed meds wise as there are quite a few listed you need to be aware of (it's not recommended to take alongside ibuprofen for example). I hope you're ok today.

[Hidden in reply to nomoreheels]

Thank you and yes, it's fine and I will not be using it for long periods but thank you for your concern 😊 

[nomoreheels in reply to Hidden]

Oh good, I hope it does help you.

[8sandylou]

I too was diagnosed RA after many years treated with many analgesics for spinal surgery gone wrong......same as you i discontinued Methotrexate after a year due to it causing Fibromyalgia and no remission......feel much better without it......currently using "Graded Motory Imagery" technique as suggested by one of the lovely members on here and attempting to balance gut floras......find I can control most pain .....but downside is I have now a Staff infection in my ear and don't want to have Antibiotics again (started as Staff Sepsis in Temporal ARTERY Biopsy wound.....I am struggling with fight or flight panic....and just taking 1 hr at a time......you are an inspiration not to give up....well done you and would be keen to hear how you go in future....hugs 😄

[Hidden in reply to 8sandylou]

Thank you 😊 x

[Hidden]

Hi. I just wanted to say that I too am managing my RA without meds. This isn't out of choice though but because I've failed to tolerate four of them. My RA appears to have taken a hike for two years after a few years on methotrexate. I know it's said to be rare that it spontaneously remits but I've actually come across four or five people who have RA that remits while drug free, usually after being treated aggressively from the outset. 

This isn't to diminish all the hard work you are putting in yourself, which is fantastic. But you may also just be one of the lucky ones (20%) like me, who has a relatively non erosive form of RA. And in my case autoimmunity has taken me in other directions and eroded some of my small nerve fibres rather than my joints. Nevertheless I take good care of myself and think that researching links with the gut and keeping moving and mindful are only ever going to be helpful. 

So it's great that some of us can manage (or in my case have to manage) without RA medications but I think we are in a minority and I wouldn't recommend that anyone here rushes into decisions about stopping medications without discussing it with their medical team first. RA is a serious disease and not that many people can manage it without medications. 

[Hidden in reply to Hidden]

Thank you and I totally agree. I would never suggest that the methods I choose to use are the answer to everyone's problems with RA. I try not to own the disease and rarely talk about it except with a professional or my Husband. I've always been a wilful and stubborn individual and have found something to put these traits to good use 😀 

All I would say is always trust your instincts. Don't do anything that doesn't sit comfortably with you or doesn't feel right. 

And yes, I do feel incredibly lucky and live in the moment as much as I'm able 😃 x

[8sandylou]

I Have bought this program since seeing Physio bloke on Frday, seeking him out to treat me with Graded Motor Imagery the basis.....turns out he uses it himself for recent Catastrophic Spinal Surgery one level up from mine.   So pleased and have been practising bout an hr each day.  Hope to reach two hrs/day.  Every GP needs to have this tool in their box of tricks....$10 is cheap too.....win win 😜😍😜

[Dodo1943]

I was 'tickled pink' with your reply, Kai. We're certainly on the same wave-length and I haven't got my feet wet yet, although I've trodden on a few shells on the seashore!!