Tempted to ask but wary (scared): Hi all hope everyones... - NRAS

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Tempted to ask but wary (scared)

Gaza123 profile image
8 Replies

Hi all hope everyones as good as they can be. My mates wife has RA she's had it a good few years and neen on all sorts of meds like the rest of us, i havent seen her for a while but my wife was talking to her the other day and she said she's feeling the best now she'sfelt in yrs. She has STOPPED all her meds with the docs backing and hasnt looked back. This has been going on for about 6 months now, makes you think eh, it did me anyways. Gonna try and find out more. Take care all

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Gaza123 profile image
Gaza123
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8 Replies
helixhelix profile image
helixhelix

After I'd been in remission about 6 months, my rheumy suggested that I try dropping doses of drugs. Apparently some people can sustain remission without drugs if they have "that sort" of RA. Sadly I didn't and it wasn't long before I had to restart the drugs. Hopefully your friend's wife will have better luck.

oldtimer profile image
oldtimer

I was off all drugs for nearly ten years at one period before I had another major flare. It makes me a bit wary of all these "cures", as the improvement could just happen to coincide with a natural variation. I have had RD for nearly forty years mind you!

farm123 profile image
farm123

There are so many variations of this disease and everybody is different. If we were all the same there would not be the range of meds available as they could give us all the same and the same dose.

I have had periods of no meds between pregnancies and for a time after but it eventually it gets me again and back to the meds. A few years ago my previous med of 7 years failed to control me and I had a horrible time over nearly 2 years to find one that would work and that proved to me that for me drugs are my lifeline. Farm

Jeanabelle60 profile image
Jeanabelle60 in reply to farm123

I hate to say it but I have to agree with you. I'm not like many on here who have been battling this disease for a lifetime, I was only diagnosed 5/6 years ago. My own experience is that I have never been completely drug free but I know from reducing them significantly I have always had to go back on my original dosage or worse an increas d dosage.

When I pore out my morning meds I often wonder what would happen if I just stopped taking all this shite. In the mornings I'm in pain all over my body, from my jaw to my feet......in the end I'd take just about anything to ease the pain so I can get on with my day......well after a few hours until they kick in that is.

This morning when I woke, before I even got out of the bed, I knew the holiday was defiantly over. I have been pain free since early September when I went on my cruise around the Med. I knew it was creeping back but this morning.......well there is was, waiting for me, just letting me know that it really hadn't gone away after all and so the battle continues.......there is always someone worse that me I keep telling myself so that keeps me going......all the best. J

Gaza123 profile image
Gaza123 in reply to Jeanabelle60

Thanks for your reply, had to laugh at the way you described your meds(shite). Very similiar to how i talk. And yeah your right theres allways someone worse off. Doesnt help when the pains going full on tho eh. Still you gotta keep going, nowt else you can do. I still work full time ( self employed builder) and i refuse to give in and to be honest when im at work it dont hurt as im occupied with stuff. Nights are crap but painkillers n hot baths help. Anyways cheers for taking the time to msg me. Take care n keep well.

Jeanabelle60 profile image
Jeanabelle60 in reply to Gaza123

Don't know how you manage to continue as a builder, fair play to ya. I know what you mean about keeping your mind going too to help with the physical pain. I bought some of those colouring books for adults. I have to say I enjoyed them but eventually my hand just gave up. I'm left handed and that is the one that is the worst effected....wouldn't you just know!

Anyhow, as you say, one painful foot in front of the other and keep going until you can do it no more, well done you. X

Bruno6 profile image
Bruno6

I was diagnosed with juvenile RA ...when I was just 13..After running sooo many tests our physician finally started Methotrexate, Sulfasalazine, prednisone and folic acid.After taking that course for near about 3-4 years my symptoms improved dramatically...all meds stoped complete remmisson for 4years..i felt sooo healthy .those were golden days of my life I was sooo active in collage and met my love during that period. Got married and I was on 7th cloud .thought its cured.But then just after couple of months ...horrible flare came ...as it's Spondyloarthritis...my hip joints were the biggest target .....walking was sooo difficult ...was on wheelchair...ohhh. Then my Rheumatologist ...put me on Remicade..and after about 1 years started walking and little exersises....finally I'm able to manage.but my left hip joint is deformed due to that major flare ....so my advise to all the RA ppl. Its never ever cures . dosages can be decreases .My biggest mistak was to stopping all the meds .But now I'm much aware.

Jeanabelle60 profile image
Jeanabelle60 in reply to Bruno6

That's terrible Bruno. This disease is so cruel. X

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