Benepali: So I take my first benepali injection... - NRAS

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Benepali

Hels1989
Hels1989
20 Replies

So I take my first benepali injection tomorrow and I'm terrified. I cant shake the worry after Humira was apparently 'probably the cause of my mums cancer's which killed her. I know biologics are the next step for me and I'm not naive to think that these things dont happen to everyone and my mum was just a very very rare case. But we all read side effects to medications and think oh but that wont happen to me. But it happened to my family. I'm part of that statistic and I'm terrified. All I can think is that I turn 30 this year. My mum died at 39. Have I only got 9 years left with my children?! The other traumatic things that have happened in my life have been almost identical to my mums life path. I cant help but panic. I am absolutely terrified but feel like I have no option 😢😢😢 any words of wisdom would be great. I know nobody will have the answers I need..just wanted to speak to some people who know how I might be feeling. Xxx

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helixhelix

I can well imagine that it’s scary. I was scared enough to start on these drugs without any family history of the types of cancer that they can increase the risk of. A tough choice you’ve had to make.

I guess there’s nothing that anyone can do or say that will totally remove the fear. The only suggestion I have is to hang on to as much a sense of proportion about it as you can. If you put health related issues to one side (all heart disease, all cancers etc) then actually the leading cause of accidental death is car accidents. Well over 25,000 people are killed or seriously injured each year in car accidents, while less than 500 die from hodgkins lymphoma for example. So life is risky, and the important thing is to live as well as you can. You don’t stop getting into cars, so don’t stop doing things that should make you feel better. I hope it works well for you.

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Hels1989
Hels1989
in reply to helixhelix

Thankyou lovely that does put things into perspective thankyou. Sometimes I need someone to do that for me. All my family can do is worry like I do as the only proper family I have that i am close to are my nan and grandad and my uncle and they are my mum and dads parents and mums brother. So they think the same way as me and have those same fears. Hopefully it works for me and that will help me feel better. I guess i just need to keep a close eye on myself and anything new going on with my body I will have to report and state my mums history. Thankyou for your message it has helped 🙂 xx

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NeonkittyUK

Hi dear Hels, first .. gentle hugs and then .. Ommmmmm ... breathe and relax! Understandable what you are feeling. Very much so. There are some Enbrel and Humira vets on here and some newer Benepali people so maybe they can help you feel more relaxed and confident about the Anti TNFs . Remember it is quite normal to feel unsettled with any new med, but the fact is you can't let RD/psoriatic arthritis run riot in your body and not take anything to supress it as that's just as bad! (I think you said yours is psoriatic arthritis?) I know Benepali/Humira specifically treat that. I took Enbrel (the original product that Benepali is now prescribed instead of) for five weeks and it fizzed out on me after a miraculous immediate effect, and took Humira for three months but that did nothing to help. They didn't do it for me but have for thousands of patients! I was scared too and spoke to the lovely NRAS Helpline and people on here too, so you're no different I assure you, It is normal to feel as you do and moreso with your Mum. Benepali is not Humira, although they treat same/similar conditions. Also, I understand your comments very much, but you have your Dad's DNA as well as your Mum's. Keep a note of any side effects and let them know if it seems unusual. Choose a quiet time to relax and do it (or are you being supervised?) Lots of luck and love. Neon. XXX

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Hels1989

Thankyou my lovely. You always have lovely words of wisdom. I think if they start to help I may start feeling better. Your a star hun and have been such a big help to me on my journey so far. I hope you are doing well? Hopefully not losing the plot like me? 😜🤣 xxx

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VeronicaF
VeronicaF
in reply to Hels1989

plus they do a lot more tests and checks now that they didn't do years ago.

I am in the same boat as being scared as I going on them this week, but I am sure like me you have had so many blood tests and checks to get this far to have them

they leave no stone unturned.

they will be keeping a careful eye on you I am sure

and any worries about anything your GP I am sure will be happy to put your mind at rest.

remember your in control of this drug, you inject it,so any worries go to the GP and get your mind at rest with checks

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Hels1989
Hels1989
in reply to VeronicaF

Thanks hun your right. Hopefully it will be completely fine for us both and we find the drug that helps us xx

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NeonkittyUK

Hels, I am doing alright at the mo, thank you, freshly infused but feeling a bit iffy as I got a flu virus last week and on antibiotics again, but Rituximab can take you low in immunity about a month after the infusion so that is now! I am feeling a bit better. I hope you will soon feel more confident about Benepali and as Vernoica has said, they are vigilant and check you a lot so bear that in mind. A pleasure to help anytime at all. Oh I am always losing the plot .. ha ha .. it is part of it, but much less these days! LOL. Let me/us now how it is going and let's hope for a quick response! Fingers crossed it will control your condition and stop the artithrits controlling you. Then you have a whole new lease of life to look forward to! Less or very little pain and good movement. XX

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Hels1989

Thanks lovely I will and glad to hear your doing well xxx

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dbestdeb

If it evens things out in your mind a little—-My mom was untreated for RA and died from liver cancer. The very organ that causes me problems when I am not on meds. I take Azathioprine and I had my first injection of Simponi last Friday. I do what i feel is best and leave the rest to God. Wishing you good results!

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Hels1989
Hels1989
in reply to dbestdeb

Oh lovely I'm sorry about your mum ☹ it's so hard without them isnt it. I had my 1st benepali today so it's done now. Will keep a close eye on myself now. Thanks hun xx

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dbestdeb

Yes it is so hard! I’m sorry about your mom too. ❤️

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Denise64

hya

I'm on Benapali and started it end of December.

I'm doing just fine on it , few side effects to begin with but settled now.

As with any thing we take there are worries and with that comes a bit of uncertainty.

I don't have the same family history as you hun

But the C runs in my family alot and I just try to block it out.

As we have to take what we need to take to have a quality of life that we need

And as a young mum you need to be as near to normal as you can .

So I say do the Benapali injection it's worked for me .

Oh a little tip is to take out of fridge an hour or so before ( as long as not in a hot room )

As I find it doesn't sting as much.

Good luck

Hope it works for you as it has me .

xxx

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Hels1989
Hels1989
in reply to Denise64

Hi hun I took my first one today and it only stung a little. No side effects as of yet which I guess I'm quite surprised about. What side effects did you have? Xxx

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VeronicaF
VeronicaF
in reply to Denise64

what were your side effects Denise64?

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Denise64

hi

It was my sinuses, I struggle with them at the best of times . n it went on a fair bit more bleeds etc , but subsided now. I got a really good sea salt nasal spray from boots which helped.

I'm good with it now n feel it is working.

Everyone is different and all I can say is you may not get any at all.

So don't be worrying, just do your injection and forget about it till next week.

xxx

Dee x

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movinalong11

My mother passed away with cancer at the age of 47, when I was only 13 yrs old. As the years passed, many family members also passed w cancer, which really scared me. I knew that I would never live to even be 47. My aunts, uncles, 2 stepmothers, and even my father were taken by cancer. I am now almost 65 yrs old! I also have fibromyalgia, Rheumatoid Arthritis. Sjogrens, and a variety of other ailments, but I am still going strong! Take heart, and enjoy life as much as you can!

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BlightyFiveStar

Hi there, I understand this worry and I always ask about cancer risks as my sister had lymphoma age 39 (survived) and I cared for my dad through terminal brain cancer (died age 59). What I keep in mind is that if I leave uncontrolled RA in me untreated, this in itself can increase the risk due to inflammation. Therefore doing nothing also has a risk. So taking the medication may I fact be lowering the risk I would have otherwise, if you see what I mean. I am vigilant and live as healthy as possible, don’t smoke or drink, meditate, exercise etc and really work on keeping a positive mindset as the narrative we tell ourselves about what we imagine is going to happen is very powerful. You are not your mum and it doesn’t follow that you will have the same outcome as her. Hugs x

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Hels1989

Thankyou lovely xxx

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BlightyFiveStar

How did your first injection go?

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Hels1989

It went well thankyou. I was worried about it really hurting but it wasnt too bad really. Just a bit of stinging after I had done it. Thankyou for asking 🙂 xxx

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