Benepali : Been using benepali with their injector pen... - NRAS

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Benepali

Wantplaytennis profile image
9 Replies

Been using benepali with their injector pen.Have persisted with it for approx 3 months with no noticeable difference to my ra. However the reaction at the injection site usually starts the day after, causing a lumpy raised swelling like part of a boiled egg under the skin which is painful to the touch and persists for a week or more which eventually will subside over a couple of weeks.

It does not matter if I inject in thigh or abdomen the result is the same so I have declined to continue with it.

Had a similar experience with kevzara bio using a syringe applicator.

Think now after my 3rd injected biologic,maybe I'm going to request jak tablets from rheumy dept,though I suspect a possible reluctance owing to higher cost,we'll see!

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Wantplaytennis profile image
Wantplaytennis
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9 Replies
medway-lady profile image
medway-lady

I found Benapali better with syringe delivery, and unfortunately JAKs Are not suitable for all so it’s not just cost. I’m not saying you’re not doing it properly but it is going into the fat as it does sound like your hitting blood vessels which cause haemorrhages are very very painful. Although unlikely in the tummy I’ve done this on my thighs. If you’re lucky enough to have slim thighs it might just be hot enough flesh to absorb the med. With a syringe it is more controllable.

Wantplaytennis profile image
Wantplaytennis in reply to medway-lady

Hi,thanks. Had Same outcome with previous bio done with syringe!

Jackie1947 profile image
Jackie1947

Sounds like it's been said you're hitting the wrong spot. I've done it a few times and bruise myself. I get it out of the frig the night before to warm up.

Wantplaytennis profile image
Wantplaytennis in reply to Jackie1947

No .I had a nurse to oversee the correct procedure!

Jackie1947 profile image
Jackie1947 in reply to Wantplaytennis

So did I but every now and then I'm off target

dwsurquhart profile image
dwsurquhart

if your biologic is not working yet, better have a conversation with your rheumatologist. I would be asking for a different one depending on your symptoms.

I started out on DMARDs with zero effect, then onto Humira (adalimumab) and had a very negative side effect. Got off that and all dmards for 6 months. Then started back on prednisone. From there I tried Kineret (Anakinra). It is a daily sub q injection at home. Was told it should work in around 7 days and after 49 days I stopped as it did not work.

From there I started tocilizumab. It has been a life saver. I know there are issues with this drug (all drugs have issues), but I look at the positive as it has help me gain a sense of normalcy. My crp when I started on this was 159mg/100ml of blood. I get the monthly infusion and after 2 weeks my crp dropped to 80ish. After the second infusion my crp dropped to 19. After the 3rd it was down to 1.2. I have now been on it for 4 years and it is still working.

Maybe ask your consultant some questions as to why you are on Benapali and if they think a different drug will be better for you.

You are your best advocate when it comes to medications that are not working for you. Do some reading and become an informed patient, do not let your doctor do all the leg work. I know in my case, my rheumatologist liked the fact I researched the different biologics and came to them with a very basic understanding and we worked together to get me the right medication.

I know nothing about medications as I am not in the medical field, but I tried and the doctor appreciated my effort. Maybe this will work for you as well?

Philjania profile image
Philjania

Benepali is itself a biosimilar to Enbrel. I was under control with Enbrel then got switched (because of cost) to Benepali. Within two weeks, I was back to square one and not recovered since. That was 7 years ago. Now on my 8th biologic (infliximab infusions) which is having some effect albeit slowly. Trouble is, now I have severe osteo in both knees caused by the lack of control of RA and have yet to see anyone from the osteo team despite it being urgent two years ago. Knee replacements could have been avoided all that time ago for the sake of £200 per month saving.

My point is, make sure to get as much info as you can from the rheumy team before agreeing to change. We have no idea what goes into these biosimilar drugs - they cannot be the same due to way that they are made.

Doodlereggie profile image
Doodlereggie

Hi

I too was on Benepali for 9 months,but it did nothing for me,did not lower inflammation at all,although had no trouble with injecting.My rheumatologist,who is wonderful,put me on filgotinib,a JAK inhibitor,which started to work from 1st week,and has reduced my crp from 78 to 7!

I thought that Benepali and filgotinib were similar in price when I looked them up,Approx £1000 a month,although I think nhs gets a discounted price..I would ask if you can change if the biologic is not working for you,after giving it a good try.He can apply for funding,if you have tried other drugs and they have not worked.JAKs are really the wonder drugs so persevere!Good luck.Let us know how you get on.

Runrig01 profile image
Runrig01 in reply to Doodlereggie

At the moment Benepali costs the nhs £654 a month, compared to a months worth of Fligotinib costs £863. So just over £200 a month more. It may be worth searching your local Trusts policy re biologics, some are quite strict. My area only allow you to try 2. So when I’ve had periods where I’ve felt it’s not as effective, they’ve refused to switch me. Thankfully on those occasions, another new condition had resulted in the flares, and once on treatment, I started to respond better to my biologic.

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