Light at the end of a long tunnel: I feel like I'm a... - NRAS

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Light at the end of a long tunnel

HappykindaGal profile image
15 Replies

I feel like I'm a lucky one. Was diagnosed almost three years ago now and along with many of us, went through every drug known to man with little effect. Social life - what social life? Having to plan ahead for a trip around the corner. Not being able to do stuff we did and people thinking we are lazy. (I run a business and got the 'look' a lot!).

Finally! Lovely Dr Gaffney said this couldn't continue and here I am now, 5 weeks with Benepali. What a difference! I feel like me again (almost). Meeting friends, back in my biz at 7am and feeling like I can do things again. I'm still taking mtx and Sulfa and yes, still have twinges. The main thing for me is that the fatigue has gone.

It's brutal that we have to go through trying all the meds before biologics, particularly as they transform many peoples' lives.

This is for people that haven't had RA for long - there is hopefully light at the end of the tunnel for you although that tunnel may be longer than you had hoped. And people on this forum are lovely and will help you too. ❤️❤️💕

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HappykindaGal profile image
HappykindaGal
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15 Replies
HappykindaGal profile image
HappykindaGal

Thank you. I didnt think id ever feel like me again. The draining pain and lack of strength and energy became the norm and I always found reasons (excuses) not to do things.

scorpiojack profile image
scorpiojack

Hi...Yes same here, was diagnosed coming up to 4 years ago. Have had all sorts of drugs. Was on Benepali and felt really good, but unfortunately for me, it brought on a skin rash so had to stop it....But am now on Rituximab and i'm doing great! Fingers crossed, long may it continue!

HappykindaGal profile image
HappykindaGal in reply to scorpiojack

So good to hear! I didn't dare to hope that it would work. I hope you continue to feel well

scorpiojack profile image
scorpiojack in reply to HappykindaGal

Thank you! Yes I would have like to have stayed on Benepali, I did feel very good on it! Hope it works for you!

Mmrr profile image
Mmrr

Thankyou for such a reassuring post. I'm 2 years into the tunnel and can't see an end yet. But you have given me a wee bit hope this morning.

Did I hear you correctly, 'fatigue gone'? Very pleased for you. Enjoy!

HappykindaGal profile image
HappykindaGal in reply to

Totally! I can't quite believe it either

oldtimer profile image
oldtimer

Thanks so much for making such a positive post. We all tend to post when we have problems and when we are feeling down, but it's good to be reminded that sometimes things DO GO WELL!

Hi Cwendyn, am so pleased for you & have had similar improvements in fatigue & energy on benepali in last couple of months 🤞it lasts for us both (always a worry). It’s made me realise how much we all put up with at the start. Am also with you on the brutal effects of dmards & the sheer toll on physical & mental health; had a friend say oh they’re expensive, that’s why you have to wait but surely cheaper in long term than joint replacements & effects of depression I thought! I was dx about 16 months ago, highly positive, & v grateful for recourse to such a game changer so early on tho hands still a problem. Do you feel less side effects from MTX on benepali as they are talking about adding this back in at next appt which I am v loathe to do as it made my life a misery for a year? Also how little can you get away with? Thanks for your positive news 😀👍x

HappykindaGal profile image
HappykindaGal in reply to

I was lucky enough not to have any side effects from mtx. I had some from the Sulfa for about 6 weeks. I still have ginger tea to combat any nausea in the morning, but to be honest, I don't get too much anyway.

I agree about the cost - surely it must be better to get people on to biologics from the outset rather than two plus years of inactivity. I would have thought there would be more financial benefits in the long term than not. I personally have been totally unproductive whereas, I would probably have employed another 2/3 people in that time who would also have benefitted the economy overall. Someone far cleverer than me clearly disagrees!

in reply to HappykindaGal

Cleverer than you (or me) surely not 😂 glad you’re doing well, long may it continue xx

popsmith1874 profile image
popsmith1874

Great news and long may it continue xxx

HappykindaGal profile image
HappykindaGal in reply to popsmith1874

Thank you!

Soreknees2016 profile image
Soreknees2016

So good to hear of your ‘success story’ and your words of encouragement for others. Long may it continue!

stbernhard profile image
stbernhard

Thank you Cwendyn for this post. I am chuffed for you and it's always great to hear success stories as well. All the very best.

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