New biologic

[Deejojo]

Found out today I’m going in benapil anybody on it please ???

[SnooW]

Yes I'm on it - and tomorrow will be injection no. 8. So far no major flares, but still feel stiff, and achy but not as bad as I was, so think it is helping a bit. Blood test next week to see what's happening with CRP and ESR. The injection pen is easy to use, but I do get a reaction at the injection site, (hot, slightly itchy, raised red area) which lasts a week and the bruise from it lasts another week after that, so my thighs look a bit of a mess with faded marks. No other side effects. Hope you get on ok with it and it works for you.

[Deniseelk in reply to SnooW]

Hi there.... a question that I have been trying to get to the bottom of. I’m also on Benepali ( since late Oct) and Hydroxychloroquine. However, i’m not given any blood tests..... seems very unusual after having copious ones whilst on Methotrexate! Who decides you need blood tests and why? Out of interest, I decided not to use the antiseptic wipes ( I shower) as had heard this causes the site irritation. I’ve never had any problem. I only got really bad bruising in the beginning when I caught a little vein ( and it bled a bit too). I now wait after the shower to let the veins cool down a little... saying that I caught one last night 😂

[Brikel in reply to Deniseelk]

I’m on Benepali and Sulfasalazine so have blood test every 3 months to keep a check on my liver

[SnooW in reply to Deniseelk]

You ought to be having monthly blood tests - the rheumy should order them.

I don't use the antiseptic wipes - when I was on mtx injections I was told not to as they make it sting. Benepali stings a bit regardless, anyway!

[Neverending63 in reply to Deniseelk]

I’m on same as you and have blood tests every month still. So I’m not sure about that one

[Flickers1 in reply to SnooW]

I take mine in tummy as my first injection in thigh was pretty uncomfortable. There are less nerves in stomach area. I get the odd bruise but generally nothing - perhaps try it and see

[SnooW in reply to Flickers1]

About to do my injection and trying to pluck up courage to do it in my tum! It's so flabby I'm not sure I can do it, even stretching the skin as u r supposed to! Lol! I'm scared it'll go wrong!

[Neverending63]

Yes I have been on it since September last year but not longer than two months without a months break due to infections and raised liver enzymes caused by another illness and not the Benepali. I agree about bruising taking ages to go and it doesn’t seem to go completely, but have no problem from injection site. It is really easy to do as well. It does sting for me no matter how long it is out of fridge. Hence I now inject in stomach which has reduced it slightly. All inflammation markers are down so it must be doing something as they never reduced that much on any of the DMARDS. I have to have monthly blood test to check liver is ok. Hope this helps.

[Brikel]

I’ve been on it for over a year and it is a game changer

I’m in clinical remission now but still get the odd flare

Keep with it and I’m sure you will benefit in time

[annie0261]

I was told the beginning of March I was going on Benepali. I was put on a 4 month Prednisone course....had all bloods along with TB ones twice. Haven't had chest xray yet, and still waiting to go on it! I can't wait to go on it to see if it eases me however, it's taking so long to get on it. Good luck, hope it doesn't take as long for you.

[Deniseelk in reply to annie0261]

I went through the same... it was taking ages but when I chased my screening blood results it turns out they were “ lost”, had them re-done and turned out I had latent TB.... 3 months antibiotics.... however I am so thankful it was picked up as I dread to think where I would be if I had started the Benepali!!!! Best of luck but it is all worth it them being so thorough.

[annie0261 in reply to Deniseelk]

Thank you.....I'll follow it up.

[Flickers1]

It’s been a game changer for me too. Still taking a lower dose of methotrexate but hope to come off that as Rheumatologist says the drug takes up to 18 months to be at its most effective. I’ve been on 9 months now.

[Em13]

I have been on it since December. I missed a couple of consecutive weeks early on because I felt I was coming down with something, but otherwise been ok - even when those around me have been ill. The nurse that demonstrated how to inject told me not to use the sterile swabs (just to ensure skin was clean first), and to inject the outside of my leg (alternating weekly) a few inches above the knee. It is incredibly painful to do, but I have had no site reactions or bruising.

I didn't have the typical RA symptoms (ie joint issues, fatigue, stiffness), but I feel so much better since I started the injections, almost normal! I have gained a stone in weight since starting, but my strength has also increased. The only side effect was unexpected hot flushes for the first few weeks, especially during the 3-4 days after an injection, and worse during the night. That seems to have passed now.

M

[dbestdeb in reply to Em13]

The higher on the outer thigh I inject, the less painful it is. Not sure why, but it’s true fo me.

[polltax]

I have been on it for over two years best if you inject into your tummy as thighs are very painful don't forget to leave out of fridge for about 30 minutes as it can sting if you don't. It must be to do with how cold it is.

[Deejojo in reply to polltax]

Thanxs very much hun

[shazmill]

Hi Deejojo I tried it but couldn't tolerate the injections. Felt like had being stabbed continuously so after five tries so gave up.

I quess certain meds suit different people. This one was not for me

[andy9131]

Hi, I started on it 9 weeks ago had to stop after 5 weeks due to hot flushes feeling awful having black stools which my doc thought maybe a gastric bleed, fatigue, was on enbrel for previous 2 years and was doing really well. Now after seeing specialist nurse have been told to re start as test came back normal but every joint is painful so they are going to have a meeting to see if I can change back as it’s not working the same.

As I said to nurse I would like to say to the people that make the decision to change your meds without discussing it with you , how would you like me to chop off your right arm and replace it with an artificial one as it’s man made and nearly the same because that’s what they said about benapali it’s man made and nearly the same as enbrel made me so angry

[TPaine]

Hi I have been on benepali for 12 weeks now and the first 10 were fantastic, for the first time in years felt well. Before starting this was on max doses sulfasalazine and methotrexate and taking etodolac regularly for pain and CRP was ranging between 12 and 25. My 2 week blood test CRP was 4!!!! I was still on sulfasalazine then though. Anyhow I then felt like superwoman after feeling so rubbish that I began doing some work again and I am doing counselling course. I am sure you can all guess what comes next. A flare, band on time for bloods and review to see if it's working! CRP 11 and feeling a flare proper. Was very disappointed but nurse was great. I still just showed enough reduction in my DAS despite the flare, which says something in itself!

So I am staying on it and being reviewed in August again. Got to take it a little easier as let flare settle. I think I forgot I had RA for a few weeks which was lovely but reality is even when drugs work, the disease is still there so the pacing self is still neeeded sadly.

I find the pen difficult because you have to press so hard so I have to use thighs and holding it done and stretching skin all tricky with RA! The pain has need variable with the pen, sometimes really stings so be ready to just grit teeth so you don't stop pressing otherwise you will lose the drug and it's not cheap!

They have offered me the syringe with my next delivery which I think will be better for me as not bothered seeing the needle. Maybe then I can control the injection better so can use my tummy.

I had boldly at 2 weeks then monthly then when stable can be 2 monthly apparently but I am still on methotrexate so I will check that.

Side effects from benepali did get sinus pain etc but did also think hay fever so taking loratidine which is helping.

Hope it works well for you, just remember to not do too much otherwise you will end up flaring like me 😤🤕