Long term options for going off medication? - NRAS

NRAS

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Long term options for going off medication?

IndigoDingo profile image
10 Replies

Hello everyone. Long time lurker here 😁

Just wandering if anyone here has had a diagnosis including postive blood test and visible in an x-ray (but not widespread) bone erosions, and then managed to go off medication long term with no bad effects (especially erosions)? I am on methotrexate (2years now) which is working to improve my energy and pain levels, but the primary reason I take it is to prevent long term bone deformity. I am sure with lifestyle change and careful management I could live for a while with no medication, but worry about the long term implications. All the people I read who have gone off medication either had an ambiguous diagnosis (eg no visible bone erosion, negative blood tests etc) OR have only done it for a year or two and have not reported whether invisble changes (such as erosion) had occured in the meantime. Would love to know if there are options to a life time of medicating! Thanks beautiful community.

10 Replies
Hessie5 profile image
Hessie5

Good post IndigoDingo - a question I think 🤔 about also. I dream my body switches RA off as it easily switched it on, just being hopeful I know, as I hear it can't be reversed from what I read.

I am thinking a lot of people who are doing well with RA no longer post, it would be great to hear more of those stories.

Personally, I am holding on to the belief that I can one day celebrate with no meds. Whether that becomes a reality, it feeds my brain with positive notes which can only be a good thing to lower day to day stress.

Thanks for posting - have an awesome day/week. 😌

RAlife2018 profile image
RAlife2018 in reply to Hessie5

Hmmmm, I suppose most would say since my RF and inflammatory numbers are low I’m good. If so, I can’t imagine how you feel...

AgedCrone profile image
AgedCrone

If you stop taking Methotrexate.....a Disease Modifying Drug....you do obviously chance serious joint damage....especially if your Xrays already showed erosions.

Once the damage occurs....without Dmards it would probably continue....why-ever if you feel better on Mtx would you want to chance that?

Some people lead good pain free lives for 20+ years on Dmards...I am one of them,& I wouldn’t dream of stopping medication just to find out if I could!

I’m sure if doctors & the NHS thought careful management & a change of lifestyle could be relied on to keep us healthy...they would stop prescribing all the expensive drugs we rely on.

I’m sure this is not what you wanted to hear, but with long term medication - after being diagnosed with Sero+ Inflammatory RA...I am getting along fine with no serious joint damage....yes I have had ups & down,& drug changes...but my joints are all intact.

Hessie5 profile image
Hessie5 in reply to AgedCrone

Thanks for sharing - now that's a positive story AgedCrone, I am smiling already 😁

AgedCrone profile image
AgedCrone in reply to Hessie5

That’s good to hear Hessie!

I’m not saying it’s been a walk in the park...but once I got it into my head RA was not going away...I was blxxxy well determined I was not just going to sit back & let it take over.

I took my meds....rejected quite a few...but I always made sure i kept moving. It’s very true...if you don't use It you lose it!

I broke my arm a couple of years ago & boy was it difficult after only 6 weeks in plaster to get it going again. So even if you only do a few stretches every day ....make sure you keep supple.

Hessie5 profile image
Hessie5 in reply to AgedCrone

Gosh shows how words are powerful - you have just given me a kick up the rear end! I have pulled out my cube to do my 50 steps I promised my son I would do today. I stretch every morning and my has that helped me no end - Thanks again. Hope all is good for you.

AgedCrone profile image
AgedCrone in reply to Hessie5

Right now I am Marie Kondo’ing my guest bedroom.

But I suffer (very) badly from Hoarding Syndrome.

I am really trying to de-clutter ....but I can’t get past reading all, the old Birthday cards,& looking at old holiday photos....then putting them back in their boxes at the bottom of the wardrobe...instead of into the bin liner for the incinerator

Guess the HI is just incurable ?

wishbone profile image
wishbone

If you do decide to try coming off mtx then don't do as I stupidly did and not let my rheumy know.

IndigoDingo profile image
IndigoDingo

Thanks everyone. I do try to be sensible. But guess I get lulled into a false sense of security. I am still quite active - I chase after two small boys, I swim every week, I walk the dog, I chop wood (and carry and stack it). I need a rest day once a week to balance it all out and get used to just ignoring the aches and keeping on going. As I had erosions when diagnosed the rheumy said I had likely had RA for quite some time before being diagnosed - so I guess I just got used to putting up with pain and tiredness. I aspire to a truly healthy life free of pain, exhaustion and ideally medication (and all the little but not insignificant side effects.) Suppose I am still grappling with the idea I will be on medication forever... just wondering if it has to be the case. You hear so many amazing stories of when doctors said things like "she would never walk again" then did, or "she only had months to live" then loved for many more years... Just hoped there may be stories like that about RA I could at least aspire to! Haven't heard any though....

Mmrr profile image
Mmrr in reply to IndigoDingo

Take the stories you hear about 'Drs' saying people would never walk again , or people live longer than expected, with a very large dose of salt. The Drs often have never said whatever, but it makes a good story.

Yes, people can walk again when not expected to do so, live longer than expected, but there is often a reason for it that the tabloid papers who often report these cases don't provide. My friend lived with ovarian cancer for 5 years beyond her prognosis, but she went from experimental drug trial to experimental drug trial, experiencing horrendous, sometimes life threatening side effects as she wanted to see her boy grow up. Her 5 years were spent in dreadful ill health, with many periods of hospitialisation.

Misdiagnosis can occur and people recover from a less serious disease.

Spontaneous remisions can occur with all health problems, but they are as rare as hens teeth. So rare that some religions have been known to make saints out of people who have experienced them.

Take care, look after yourself.

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