Still in remission after nearly five years: I don’t... - NRAS

NRAS

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Still in remission after nearly five years

Staycalmandcarryon profile image

I don’t know exactly what prompted me to post again after so long. The idea just came into my head. I do not want to give false hope but I do want to share my story of long-term remission.

I was diagnosed seronegative RA in 2015 by a consultant rheumatologist. A combination of pred and HCQ was prescribed, with a better diet and exercise after six months things started to improve and a further six months later ( to the surprise of the rheumy) I was in remission where I’ve stayed.

Like I said, I’m not in the business of false hope and I take nothing for granted. But for a fortunate few remission can happen and long may it last.

25 Replies
springcross profile image
springcross

That's really great and long may it continue for you. 🤞x

Lolabridge profile image
Lolabridge

Lovely to have some good news which can give us hope too!I hope it continues for you. 🤞🏻

Knip profile image
Knip

I love your post. I'm sero positive and I have had RA for around 54yrs, and during that period I have had several long remissions...followed by quite nasty flares lasting a couple of years and I'm in one now. The mistake I made was coming off meds when I felt so very well...I really, with hindsight, wish I had stayed on a lower maintenance dose as is recommended now, but that was never suggested back in the sixties and seventies. Things were so different then...and aspirin was a key drug in use. There were no specialist RA consultants in my area then, but thankfully over the years things have changed enormously for the better. So glad to hear that you are so well. Take care, 😀

medway-lady profile image
medway-lady

Great and I'm in remission too !

nomoreheels profile image
nomoreheels

I'm really pleased you've posted this update SCACO. I think it is important to hear that it is possible, hear of positive outcomes. It's important to give hope not only to those who may be struggling but for those newly diagnosed to see that it isn't necessarily always going to be the way it is though it may feel that way. While for some it can take a little while to find meds that you respond well to because RD is so variable, we say regularly there's no one size fits all as the disease isn't that type of condition & the scientists haven't found the magic bullet yet. You were very fortunate your Rheumy sorted yours quickly but you helped too, no doubt cleaning up your diet & exercising went a good way to where you've stayed, so it's a timely reminder that it's not always the case we can just take meds & hope that's it, & blaming them when they don't work. If we haven't tried we need to look at ways we may improve our chances too.

Well done, it's lovely to hear from you & I wish you many more years of remission.

Paula-C profile image
Paula-C

It's wonderful isn't it? Another success story here, I've been in remission since early 2013.

allanah profile image
allanah

Lovely positive post and I hope it brings comfort to those suffering today xx

helixhelix profile image
helixhelix

Great to have a positive post. Many of us manage to live ok with RA (and our meds…)

Neonkittie17 profile image
Neonkittie17

It does happen for quite a lot of people that RA stays away for many years as the meds are working well enough to do that. It’s often difficult to know what will work and that’s the frustrating and upsetting part for many. I had two failed anti TNFs after 2 x 8 year periods of no RA symptoms on dmards and then after a year of the 2 failed anti-TNFs I have had another 8 years with a med since 2014 and no RA symptoms whatsoever. So, there’s hope and many of us on here too are proof you can control the RA. I have also always watched my nutrition and exercise. It’s really good to hear someone is doing so well. 👏🏻💗

Doughnut61 profile image
Doughnut61

Absolutely wonderful 🥰

Sheila_G profile image
Sheila_G

Thanks for posting this. I too am in remission and have been for several years now. I do get flare ups but they are aimed at one or two joints so I can cope with them. I believe when there are only 2 or 3 joints affected that is what is called remission. A word of warning for anyone who has been told recently they are in remission, please don't stop taking your meds, it will come back and hit you big time. Always follow the advice of your rheumy team.

Tkat10 profile image
Tkat10

Great news, I went into remission after methotrexate. However my side effect cost was to high to go back on it again 😩

Minah profile image
Minah

Pleased to hear this good news I also want to know that are you totally pain free and could carry on your daily routine without any stress or difficulty and also share what boundaries of do and don't you have set for your self regarding your health .

Wadebridge profile image
Wadebridge

Hey, hello and I think that’s wonderful. I’ve had good blocks of remission too. I’m on baricitinub and now following a gluten, dairy free diet. Exercise for me is key. If I can get out and have a jog, I am a happy bunny. I’m really hoping I can get into remission with my new diet and no drinking red wine (that’s the big one) I know I’ll be able to achieve so much more in the day. Even if my feet hurt in the evenings. It was lovely to read your post. 💪💪💪😎keep up the marvellous work.

Bails67 profile image
Bails67

Yes, it is possible. I have been in remission years with a biologic. I count myself very lucky it worked and has continued to do so. I am not 100% but able to carry on nearly as normal, although worn out after work . I do agree with another comment my diet definitely helps, try to stay active. My consultant once said to me use it or lose it and the best advice I could have been given.

Hessie5 profile image
Hessie5 in reply to Bails67

Hi Bails - have you reduced your biologic at any time? I am thinking of asking if I can inject fortnightly instead of weekly. Just so my body isn't so reliant on it.

I, too eat well and do moderate exercise - Hessie 🙂

Bails67 profile image
Bails67 in reply to Hessie5

I inject with Imraldi and previously Humira so it’s always been every 2 weeks. ( The reason I picked it 😂) .I have asked many times if I can stop taking it but told I will inject for life now.

Hessie5 profile image
Hessie5 in reply to Bails67

Thanks - those words ‘for life’ penetrate - I wish it could be different - one day 🙂

trace58 profile image
trace58

what diet are you following

hatshepsut profile image
hatshepsut

What good news. I live in hope!

Neonkittie17 profile image
Neonkittie17 in reply to hatshepsut

😑 Hi Hats, hope things are ok at the mo? Steady as they can be. I know like me you have joined the zero a/b’s club .... and I wish you hadn’t. Hopefully we’ll get it sorted out eventually, Gentle hugs. 💗x

hatshepsut profile image
hatshepsut in reply to Neonkittie17

Hi NK....am changing my medication to upfacitinib. Hoping that will be an improvement. Waiting for results of second test after 3rd vaccination........first one said negative for antibodies again! Hope you get better results in the end. Take care x

Hessie5 profile image
Hessie5

Great to read happy news - thank you, there is always hope 🙂

ketiv74 profile image
ketiv74

Thank you for posting, it's always so good to hear a positive story.Long may your remission continue!!

And I also agree with what many have said here- Diet and exercise certainly help.

Mmrr profile image
Mmrr

Good to hear

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