Benepali

[Vonnie10]

Hi folks , just to pick your brains, when you see the rhem nurse for education on benepali, they tell you some one from the company will contact you regarding the drug, do they phone you to fix a date for delivery of it? I'm a little confused 😐

[Mhairi54]

Yes they contact you and arrange everything. I get mine from Healthcare at Home and have found it to be a great service. They phone and arrange a suitable date with you, then text you with reminders about your delivery. Delivery slots tend to be morning or afternoon, but you can ask for a 2 hour window which makes it a bit more manageable. At first they only give you a months supply at a time, then once you've been established on it for a while they will give you a 3 months supply. I've been on it for 6 months now and have just received my first 3 month supply.

[Aloquifiqie in reply to Mhairi54]

Oh. Thanks for your info. I'm waiting my first delivery next week, then a visit from the nurse to show me how to do it. I'm nervous about doing it myself. How has that been for you? Also has the drug had a positive effect yet? Thank you!

[Mandalou in reply to Aloquifiqie]

Hi Aloquifiquie

This is what happened to me. I had my first delivery and then the Biologic nurse came round and taught me how to inject with a demo pen.

She then watched me do it for real in my thigh.

At this point I was on Enbrel and stayed on that for just under a year then I was switched to the Biosimilar Benepali which has the same active ingredient Etanercept.

I alternate my thighs and for the first year used to write a little L or R against each Wednesday in my diary.

Now I'm so used to it that I just kind of remember and bang it in at some point during the day. For the first few weeks a red raised lump would appear on my thigh but that very soon wore off and now sometimes I get a tiny bruise but you would never know.

Enbrel never used to bleed and wasn't as painful but with Benepali you press the end of the pen against your skin and there is a brief few seconds of stinging uncomfortableness but that is over so quickly I barely think about it.

Take it out of the fridge 45 mins to an hour before you use it , don't leave it in direct sunlight and once out of the fridge it is good for a month as long as it doesn't go above 25 degs but of course that is too tricky to monitor so fridge is best.

I travel internationally with my job every week and have found rather than go through the faff of cool packs ( not terribly reliable IMHO) I adjust my day of injecting to suit.

So Wednesday is my normal day to inject and if I'm going away on a Tuesday and back Saturday I take my jab as late as is feasible on the Tuesday a day early then take it the following Wednesday as normal or if I go away on a Monday and get back in to the country on a Thursday I take it as soon as I can that day. My Biologic nurse says it is absolutely fine to do that.

I find myself very protective of my stash in the fridge and I am 100% on it when it comes to delivery from Health Care @ Home.

I'm afraid it can be a hit and miss service not always their fault.

Depending what health care authority/hospital you are under sometimes their prescriptions can get lost on the way to Health care @ home which can hold up proceedings.

This has happened three times to me , it's trial and error but a swift call to your Rhuemy nurse at the hospital ( not the Biologic nurse who trains you to do the jabs) usually gets the ball rolling.

The actual delivery service itself is very good and from 8pm the night before you can look on the HC@H website and they will give you a two hour slot.

Also they send reminder text messages with your delivery slots too. Don't forget after your first delivery where it should come automatically to ask for a yellow Sharps bin when you need a replacement. The delivery drivers take the full used ones away. I usually make mine last about two/three months as they are quite large and keep it in the garage.

You will get used to the whole ritual and rigmarole very quickly. Don't forget to keep good communication between your Rheumy nurse on the advice line if you have any problems. Mine always get back to me and squeeze me in as an emergency as I suffer from allergies to a lot of the medication.

The Etanercept combined with Hydroxychloroquine enables me to work or at least battle on through.

I'm not saying life is easy by any means and pretty much everything still hurts and I limp like an old woman of 90 sometimes- but I'm fighting the good fight and am grateful for a system that treats me with these special meds.

Good luck to you and hope Benepali really works for you and gives you much relief.

Mx

[Aloquifiqie in reply to Mandalou]

Wow. That's all amazing. Really appreciate you taking the time to reply in such detail. I really get your 'fighting and good fight' comment. I feel that is how I'm coping with my RA, and yes, I too value these medications. I remember how I felt without them and I just don't want to go back there. Hope all goes well with you and thank you again.

[Mandalou in reply to Aloquifiqie]

You are very welcome, anything to help!

Mx

[Mhairi54 in reply to Aloquifiqie]

Benepali worked for me within the first couple of weeks of me starting it. It was great not to be in that level of pain anymore. Hasn't been 100% effective however and I still have an element of pain but so so much better than I was. At least now I'm functional - back to work, looking after the house and 2 active kids!

The injections are so simple and so quick. I didn't even get a visit from a nurse for my first injection, I was just given a talk and a demonstration with a dummy pen at my hospital appointment. Then didn't get my injections delivered until 2 months afterwards!!

It does sting, so be ready for that. I just close my eyes and count to 15. By the time I reach 10 the stinging has stopped. So simple!

One last tip, don't muck around with the sharps box when it arrives with your first delivery.... I managed to lock mine within 5 minutes of receiving it and never managed to get a single injection pen into it!! One sheepish phone call to my GP surgery later..... what a numpty! Hope it goes ok for you.