Benepali: Hi all hope you are all well I have been on... - NRAS

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Benepali

Bully915 profile image
6 Replies

Hi all hope you are all well I have been on benepali for nearly 4 months now but don't feel as if it is working yet, was diagnosed about 4 years ago and take mtx 25mg weekly as well as folic acid and sulfasalazine 7 tabs daily. but my bones ache every day and night is this normal. billy

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Bully915
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Horsemadhere profile image
Horsemadhere

I've been on it a similar length of time. I also take hydroxy, leflunomide and pred. (not sulfa tho)

I think there has been an improvement in my fatigue, I feel I can do a bit more and sometimes even stay up past 8 o'clock!! But in terms of my pain I haven't really seen much improvement and the past week or so my hands, wrists, toes and ankles are probably worse!

I was hoping it would be a miracle cure, but for me, not yet.....

Bully915 profile image
Bully915 in reply toHorsemadhere

Im the same dont have as much swelling just the pain in joints

28maggie11 profile image
28maggie11 in reply toBully915

Been on it for six months but not great. Started on mtx 7 and half 3 weeks ago but still getting worse. Dont cope well with mtx

LizzieR profile image
LizzieR

Hi,

Me too. I was hoping for a miracle but... Is it possible that Benepali makes joints worse?! I have PA in all joints. I gave up work- feels that everyone manages to work through it but I'm a wreck! I'm on mtx as well

Bully915 profile image
Bully915 in reply toLizzieR

Yea a know was hoping it would be a miricle cure get back a normal life and enjoy hobbies again

Bailybiscuit profile image
Bailybiscuit

I tried it but I got worse and wasn't able to lower my steroids below 13.5

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