Benapali: So got a call yesterday my benapali is being... - NRAS

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Benapali

Deejojo profile image
16 Replies

So got a call yesterday my benapali is being delivered tom morning well let’s hope this 1 makes some difference 😔😢

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Deejojo profile image
Deejojo
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16 Replies
Loopyleeds profile image
Loopyleeds

I really hope this works for you.

Best wishes xx

Nsmith13 profile image
Nsmith13

Good luck 👍

roseyx profile image
roseyx

Hi.I hope this will help you. Is this the start of biologics for you? Are you nervous about it ?

I had a call yesterday too about the same thing. Mine are arriving next week so like you I am hoping this will turn things around.I have had over a year on MTX and then sulphasalazine which seemed to make no difference.

Deejojo profile image
Deejojo in reply to roseyx

Me too hun I’ve had humira but it didn’t help x

phil_54 profile image
phil_54

Hi, I went on Benapali last December and to be honest because i was still taking MTX along wit the biologic am not really sure if it made a difference or not, the only thing i can say is eventually i had to stop all meds because my liver markers went through the roof and up to starting Benapali i had been on MTX since 2014 with very little problems, Am now waiting for appointment for Rituximab infusion and just hoping the steroid injections keeps working until then, the other thing i noticed because you have to store in the fridge i would make sure you take out at least an hour or two before you administer as it can be quite painful if its done straight from the fridge.

I know this message doesnt sound very positive its just an honest opinion but all meds affect different people in different ways so hope all goes well for you.

Cheers

Deejojo profile image
Deejojo in reply to phil_54

Thank you just another 1 to try I suppose there being delivered today this morning sometimes

sallygrain profile image
sallygrain

Hi. I had my first benapali yesterday with nurse. Yes i was scared before hand. The technique is different to mtx stretch dont pinch hold for 15 yes 15 secs after the last click and yes if its cold it does hurt more. i had to use it cold because the nurse coukd wait to let it warm up. We came in to the house together and it came out and sat for 20 mins. Not long enough at least an hr. But afterwards nothing much to report. Slight bump ,the drug is more complex larger molecules and takes longer to disperse under the skin. No immediate side effects to report. Not many have unless its instamt allergy and that why nurse is there incase you crash , not many do 😂so dont worry too much. I am in middle of hiddious flare and feel like crap and have to get moving anyway too much to do.

oh well every best to you when you take your first. i hope for an easier less pain in the middle of the day. Xx

Jackadoodle profile image
Jackadoodle in reply to sallygrain

Hi, what part of the body did the nurse advise you to inject? I inject into the thigh as I find it less painful than the tummy.

Deejojo profile image
Deejojo in reply to Jackadoodle

I haven’t seen nurse yet hun not until next Wednesday where do u find easier?? X

Deejojo profile image
Deejojo in reply to sallygrain

Thanks hun I hope you feel better soon 👍

sallygrain profile image
sallygrain

Thigh yes seems easier. Though havnt done it yet into tummy I think it will be hard to stretch tummy especially with hands that dont work! 😕

sallygrain profile image
sallygrain

Also got to remember axactely where and rotate carefully. Think i will use a pen mark?!😊

Jackadoodle profile image
Jackadoodle in reply to sallygrain

I have MTX on right thigh on Friday and Benepali left thigh on Monday’s

Brikel profile image
Brikel

It may take up to 4 to 5 weeks before you notice an improvement

Vodkafuelled profile image
Vodkafuelled

Benepali is my 3rd biologic and the one that has worked the longest, so far (about 18 months) the others haven’t given much relief. I’ve taken mtx along with all my biologics as they apparently assist the drug? Agree that it stings if too cold, allow to warm up - theres not a small window from removing from the fridge.

I’ve found that it seems to make my mtx side effects worse, always had nausea and tiredness the day after but it is now delibatating and I lose a day a week. Rheumy been excellent, now switching to mtx injections to avoid the gut and hopefully the side effects.

Everyone is different in how they react to certain drugs and drug combos, don’t be disheartened if it’s not the one for you. Good luck!

Deejojo profile image
Deejojo in reply to Vodkafuelled

Thank you 😊

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