NRAS
22,800 members26,516 posts

How dramatic an effect might Benepali have?

Hello. I've been off work for 18 months since becoming unwell, probably with a seronegative RA or similar condition (awaiting final diagnosis still). I wasn't well enough to continue working (multiple hospital admissions and various complications), lost the job that I was doing and so will have to start job hunting again when I can.

I've had severe side effects with methotrexate and sulfasalazine so if I meet criteria next month I may be started on Benepali. Of course I'm always thinking about ways to get back to some type of work. Am I over-optimistic to think I could soon return to a full-time very demanding job once on Benepali? Should I instead be thinking of something that would accommodate ongoing symptoms or drug side effects? Of course everyone's condition behaves differently but I'd be interested in hearing whether people found it had a dramatic effect.

Thanks for your thoughts on this.

17 Replies
oldestnewest

Hi,

I'm sorry to hear what a bad time you're having. I too lost my job - mine was due to Psoriatiic Arthritis- and for a long time was looking for the 'magic pill' that would get me back into my stressful work! I started on Benepali in Feb. I know lots of people find it amazing, but for me there was too much damage in my joints, so I still experience a great deal of pain and stiffness. I also still get inflammation- the disease is still spreading. I've had to learn to look after myself- pace and be realistic. As I've said before on this site, the key for me was to realise that you fight this through rest and being sensible! I don't mean to put you off- Benepali might work wonders for you and I hope it does. But this is, for most, a life changing illness. The good thing is that life can still be brilliant! X

2 likes
Reply

Thank you so much, LizzieR. It's so helpful to hear what the reality might be as I don't know anyone in a similar situation. If I know what I might need to do to adapt my pace of life and work that is really useful.

Reply

Hi CloudGazer,

I am so sorry to hear about your health issues, but I am also happy to tell you that there may be much more hope than you first realised.

Please look into the work of Chris Kresser, Justin Sonnenburg, Rhonda Patrick, Amy Myers, Terry Wahls, Dave Asprey, William Davis and many, many more like them.

The solution to your health problems are out there, you just need to find them.

Reply

Thank you, Allsopp. I'll look up their research. Always good to be able to look at the evidence base.

Reply

Hi Allsop,

I'm nervous about your reply. It seems to offer hope if we work hard enough at finding solutions- Lorenzo oil ish. Whilst I agree it is useful to research, know your illness etc and use diet/ exercise etc to be as healthy as possible; I don't think there is a magic bullet out there and it is damaging to suggest there it. It offers false hope- and encourages people who are desperate, to buy endless books/ spend lots of time. I have been chronically ill with one thing and another most of my life. It's genetics. Not my fault- not anything I have or haven't done. I too did endless research; followed extreme diets, danced under a full moon, washed in omega 3 nuts from the Brazillian Rain forest... You get the idea. The best thing to do, I think, is to accept the illness and then find solutions so that you can still enjoy life and do what you want to do. Ie have fun, enjoy life despite the illness, rather than spending hours hunting for the holy grail of health. You might feel hope whilst the hunt is on, but there's a crash at the end if you don't. Western medicine- Benepali included- is wonderful and works for lotsd of people. I hope it does for you Cloudgazer. But don't waste too much precious time/ energy looking for magic x

4 likes
Reply

Hi sorry your having a bad time, I have PsA for17yrs it affects my hands wrists and feet mainly but some other joints too, I have been on a few dmards but side effects were bad so I was taken off them. I started on benipali in Feb and feel amazing, I feel like me again and have energy. Still have to take it easy some days but not everyday😀

3 likes
Reply

Thanks very much, Belle76. I'm so pleased to hear that you have been able to feel like you again. It must be wonderful to have energy back most of the time. I hope it continues for a long, long time for you.

Reply

I take etanercept - benpali is a biosimilar - and now have a pair of walking sticks which are gathering dust. It can be a great help - the downside is that it doesn't reverse any existing damage. Good luck - keep us posted.

2 likes
Reply

Thank you so much, Artroc56. I will certainly keep you posted. I'm at the stage of waiting to get worse so that the medical detective work can continue, but I remain hopeful of something coming out of the waiting game. How wonderful that you are able to manage without your walking sticks. You must be delighted.

Reply

I'm on etanercept, started taking it November 2012 and at follow up appointment early the following year was in clinical remmision and still am. I have the odd ache here and there but not bad enough to reach for pain killers. Hope it works it's magic god you. xx

2 likes
Reply

That's wonderful, Paula-C, and thank you for the good wishes. How encouraging to be in clinical remission. I'm so pleased for you.

Reply

I also had problems with sulfasalazine So was taken off of it, I now have Methotexrate and Benepali and have mobility of 90% so I hope that you are able to be prescribed Benepali as it made a big difference for me.

Wishing you AllThe Best.

2 likes
Reply

Thank you, Jackadoodle - that's really kind of you, and thank you for the information about your experience. I'll wait to see what my consultant's next step will be and hope that at some point there will be a good outcome. In the meantime I will keep as busy as I can and enjoy the summer.

Reply

Hya, I was diagnosed with RA just over 2 years ago, I had to give up a job I loved unfortunately, I am now on Methoraxate and Benepali injections and Hydroxychloroquine tablets twice a day. My health has definitely improved but not enough that I would feel confident in looking for a job. Went to see my Rheumy nurse yesterday, and it seems that my inflammation markers are up again. Even with all the meds I'm on. So just wonder what I'd be like without them. But every one is different, hopefully things will get better for you, just take things easy. XX

2 likes
Reply

Thank you, lifeboatann58. That's important to hear. My usual job is an extremely busy one with high levels of responsibility and a need to be completely reliable, so I want to be really realistic about what might or might not be possible, especially with my history of drug reactions and severe side effects. I'll take things very slowly and hold off making any major decisions about work for a little while longer.

2 likes
Reply

Hopefully things will work out for you, Everyone reacts differently with the drugs. Good Luck for the future. XX

Reply

Hi CloudGazer

Sorry to hear your difficulties.

I had sulphasalisine and methotrexate but now on Benepali for 6 months.

I have found Benepali a real help. The previous meds gave me all sorts of breathing and lung probs.

As far as I can tell little side effects so far on Benepali.

That said I seem to have developed Polycythemia- but nobody is saying there is any link to Benepali- just one of these things.

Beware there is no magic bullet. The Rheumy Team are trying what resources they have to complex diseases that all react differently with different patients - not easy.

Best wishes and hope your treatment goes well

3 likes
Reply

You may also like...