Anyone else had this after first dose of Benepali?

[Balletmum71]

Hello everyone, I've just had my first dose of Benepali three days ago and the pain in the joints that I have RA in is at screaming pitch along with stiffness. . I'm very very tired have a stinking headache and basically in bed . Has anyone else felt like this after their first dose? I am wondering whether I was at the start of yet another flare and I've been caught in the cross fire .

Due to see rheumy next week so not worried but just wondered if this was a typical reaction to the drug .

It's taken a long time for me to be treated due to me reacting to some drugs and others being no use whatsoever.. I'm on steroids and have been for two and half years with tramadol for back up as I can't take arrcoxia or anti inflammatory meds.

Thank you,for,reading .

Balletmum71

[Lolabridge]

Hi Balletmum71

I had no adverse reactions at all to Benepali, unlike the other DMARD drugs which made me more ill!!

I noticed some improvement in my symptoms after several weeks but as I could not take MTX with it the improvement was insufficient and my consultant has put me onto Truxima.

I’m still taking Prednisolone (10mg daily) at the moment but hope that as the Truxima gets to work I will be able to reduce it. I’m managing without any painkillers at all most of the time now.

I would have thought that 3 days after your first Benepali injection is very soon to get a reaction.

[Balletmum71 in reply to Lolabridge]

Thank you for replying so quickly Lolabridge .

Yes I thought it was a little quick to be reacting to the Benepali . I have read that some people are jumping around like Larry the lamb even days after their first injection or some have felt nothing at all.

I had to be given my first dose in hospital for various reasons and it as given very very slowly over two days . I will be getting the second dose in hospital as well .

It feels like I've been given multiple steroid shots so I'm hoping it's a positive sign that my body is accepting it and targeting the disease .

Time will tell I suppose .

Thanks again for replying and I hope that your next drug helps you and you can come off the steroids.

[paulhusky]

Hi I’ve never taken benepali I’ve been on tramadol for about 6yrs and addictived to it also as I have osteoarthritis in spine am on pregablin(Lyrca) duloxatine as nerve blockers as well as tramodol and seeming to work at the minute.

[bernie64]

I've been on benepali for a couple of years. Didn't have the same reaction as you did and it took a few injections for it to make any difference.

It just seems to take the edge of the pain and I have frequent flare ups, but the only thing I can take is pain killers. Reading other peoples comments I wonder why I'm not on other medication as well as the benepali.

Are you going to be self injecting? I have found putting a hot cloth on the part of my leg before I take the injection makes it a bit less painful!!!

Really hope you are one of the people jumping around like Larry the Lamb

[Balletmum71 in reply to bernie64]

Thank you Bernie 64 , your reply has been really helpful and useful to know that it will probably take a while to work .

Today has been a bad one as it also thought that I have inflammation of the rib cartilage and sternum as part of the RA and that has reared its ugly head. I found moving and breathing very tough going so gave up and went to bed , gettingup at 3 pm . It started to ease after my third dose of tramadol (!) and now it's just starting to hurt again .

The fatigue is , well you all know what the fatigue is like so I'm being kind to myself for once and just going with the flow .

Hopefully it will all settle down and form next week onwards i might start to feel a difference .

I haven't been treated for a while now and I suppose because the pain is quite severe anyway , it will take time to subside.

I'm hopefully going to self inject yes, I'll find out more about that on Tuesday I expect but thank you for the tip about adding heat to my skin before injecting. It stung enough when the nurse and dr gave me the injections and that was on my tummy!

I hope you are feeling okay and feeling as well as you can .