Benepali anyone?

[Beelady]

Trying not to get dis-heartened. Diagnosed 2 years ago but nothing really helped so had daily pain, fatigue etc since. Started Benepali 5 weeks ago but not really made much difference...maybe be a slight easing of fatigue but I'm not sure. Wondered whats others experiences were?

[Hidden]

Hi, I started benepali last September and it has made a big difference to my inflammation and some difference to my pain. I think it was around the one month mark that I suddenly realised one day that there was a difference in the way I felt. I hope you get increased relief the longer you are on it. I had a check up after 3 months and bloods analysed and my inflammation markers had reduced drastically. Good luck, let us know how you do x

[Beelady in reply to Hidden]

That's great. So pleased for you. I'm seronegative so blood markers dont really work with me but I'm hoping to notice a difference. These drugs feel pretty hard-core to put into your body if they are not doing much!

[Mmrr]

I have just started benepali, my third injection is due tomorrow.

Mmm...maybe beginning to feel a bit better, not sure, but some positive changes I think.

After a horrible first week with awful fatigue and nausea, I have had a better second week.

The hot disrupted sleeps I was experiencing pre benepali, seem to have gone. I'm sleeping much better, so I am not so tired during the day. Also maybe some subtle changes in my hands, they are maybe a bit stronger, not sure.

Early day still at 5 weeks, I hope things move along for you soon.

[Beelady in reply to Mmrr]

Glad to hear things improving slowly for you. I find the sudden temperature changes tough too. Not often talked about but I often get suddenly very hot. I think its the inflammation doing that though I dont get alot of physically swelling. Fingers crossed things start shifting for me soon too. Thanks

[Kerensa21]

Hi Beelady; had this about as long as you, on benepali since sept like kitty & noticed massive improvement in sleep like mmr (after a year of not sleeping & feeling constantly nauseous on other dmards). It did seem to stop a big shoulder flare I had when I first started it after being drug free for 6 weeks. Hasn’t totally stopped hand wrist ankle pain but manageable from what I started with. Same temperature fluctuations like you & occasional nausea but best so far for me. Fatigue seems better than what I started with?

For what it’s worth, rheumatologist said up to 12 weeks for optimum effect so really really hope yours improves more. Yep it’s a disheartening old disease with scary drugs but the alternative’s not great either (I try & think on a good day 😉) good luck x