benepali injection

[Nantocallum]

hi I am 61 suffered for 30 years with RA tried a few drugs now the want to put me on benepali injection but I am really worried about the skin cancer they tell you it rare. but if it does any up giving it you what them to late. you are supposed to have medication to help you not to make you worse anyone been on this drug and how have it been for you please

[Amnesiac3637]

Presumably you’ve panicked yourself by reading all the side effects of the drug. If more people were made worse by a drug it would not be licensed for use and Benepali has been prescribed to millions.

Don’t forget that if the patient information leaflet says 1 in ten people get an adverse effect, 9 out of 10 won’t. All side effect by law have to be listed in case the manufacturers get sued but only one person in 100,000 may contract a cancerous condition. You’re much more likely to have diarrhoea and nausea while your body works out what you’re feeding it and then settle.

The risk versus the benefit will have been worked out over many millions of dosages given to RA patients by their consultants so stop worrying and with any luck this will be the drug which suits you and maybe puts you into remission!

[KittyJ]

if you look at the patient information leaflet for any meds, not just RA ones, then you’ll find lots of horrible things that could happen to you if you take them, but that doesn’t necessarily mean it will. Like me you will have taken all the horrible meds we were given before biologics came along, did you take those despite the possible side effects? It’s all about weighing up the risks, as you know uncontrolled RA can have serious risks, not just to your joints. I’ve been on Benepali for 5+ years now and it has worked really well to keep my RA under control, I hope it does for you too 🤞🏻

[Nantocallum in reply to KittyJ]

Thank you that made me feel a bit better xxx good luck

[KittyJ in reply to Nantocallum]

Let us know how you get on 😊

[Nantocallum in reply to KittyJ]

I definitely will hun xx

[Jackie1947]

If we read all the hype we wouldn't take anything. I've been on Benipali for a couple of years. No adverse effects,no cancer or anything. Best drug I've had and it put my RA into remission.

[AnnieJ123]

I understand completely. I felt the same and to some degree still do. It is right to be cautious. I was given benepali injections just over a year ago, and it is a wonderdrug for my RA. Pain, swelling stiffness gone. In this respect a blessing and my hands were very bad before this treatment. I have had RA for over 40 years , and the errosion and deformity remains, but the pain, swelling and stiffness has gone. I weigh 53kg and worried that benepali was too strong for me. My consultant was not bothered by this or by my low neutrophils. I check my moles myself. In France anyone n on anti tnf has annual skin checks, but not in the UK. We need to remember that RA can cause havoc to any part of the body. The disease is harmful. The only thing we can do is try these medications, be monitored and be aware. Good luck.

[Nantocallum in reply to AnnieJ123]

Thank you and you xxx

[helixhelix]

uncontrolled RA can have some horrible consequences as it can attack just about every part of you body as you probably know if you’ve had it 30 years? I am more afraid of the disease than the drugs.

[Marionfromhappydays]

These drugs do definitely make you stop and think but as others say untreated RA is a menace! I've been on Benepali just over 2 years now, took a little while to work but now I'm back at work, it's been a great thing for me.

I am aware to be careful of the sun etc but my life before benepali was miserable, now it's not x

[Runrig01]

I’ve been on benepali for 7yr, with no issues. Legally all side effects need listing, no matter how rare. I doubt you’ve ever read the leaflet inside a box of paracetamol which also has some scary possibilities. It’s also important to know that uncontrolled inflammation, also increases the risk of cancer. It’s about weighing up the risks and benefit.

[MJSlide1958 in reply to Runrig01]

please may I ask a question re inflammation markers. My daughter's inflammation result was 26 (the level should be no higher than 15). Is 26 a dangerous high?

[Runrig01 in reply to MJSlide1958]

Not at all. I’ve nursed patients with levels several hundred in number. Anywhere between 10-100 indicates mild to moderate inflammation, so your daughters indicate mild inflammation. Nothing to worry about

[MJSlide1958 in reply to Runrig01]

Ah thank you! Do you happen to know if it is ok for her to have a bio yogurt, in particular she likes the Yeo valley range, but she has been advised that whilst on biologic, Enbrel 50mg weekly, it is not advisable to take any probiotics? I still have not had a clear answer from Pfizer or anyone to say if this is true. And then with Methotrexate leaflet it states not to have black tea?? We don't know what to think and decide? She is currently just having a normal Greek Yogurt which is plain with no added probiotics, this does not seem fair. How should she keep her stomach healthy, when limited choices??

[Runrig01 in reply to MJSlide1958]

I was advised by my rheumatologist to avoid probiotics, because some of the bacteria could multiply and cause infection, so I personally avoid. I do know others whose Rheumys are more lax with their view.

Probiotics

[MJSlide1958 in reply to Runrig01]

Thanks very much. That explains it clearly.

[Hairbraid]

hi I understand I’m waiting

to go on benapali too so nervous and the photosensitive which I also suffer from and having had bad side effects to two and allergic reactions to last two biological injections I am very nervous take care

[Jackie1947 in reply to Hairbraid]

I have a list of drugs that I've had to come off but Benipali isn't one of them. Two years down the line with no problems. Best drug I've ever had as it's improved my RA immensely. Try to be positive if you can.

[Hairbraid in reply to Jackie1947]

Yes it’s hard when this is going to be my 10 th medication when nothing worked and last few biological have made me so ill my friends say this it’s just my ra is getting worse and feel low at moment thank you

[Jackie1947 in reply to Hairbraid]

I'm so sorry you are going through this. Are you aware that there are talking therapies? Your GP can help you plus Rheumatology. Talking does help

[Hairbraid in reply to Jackie1947]

I’ve just signed up for this thank you through my gp so kind of you 🩷

[Jackie1947 in reply to Hairbraid]

You're very welcome. Take care.

[Hairbraid in reply to Jackie1947]

And you xxxxx

[Nantocallum in reply to Hairbraid]

Good luck Hun hope it works for you xxxxx

[Hairbraid in reply to Nantocallum]

You tooo xxxxxxxx

[Bethany02]

Hi was on it for years it was great until recently did not worry about side effects only it stopped working 😭but sunscreen should definitely cancel that one out

[SueBaker]

Hi, you know, sometimes we overthink these things. It's true that some of the RA meds are not what we would take if it weren't for the awful pain we get, however there are very strict rules about prescription medicines and the makers have to go through a heck of a lot to even be able to apply for a licence for it's use. At some point, read the info on things like aspirin and paracetamol, that we all buy from the supermarket without worry. EVERYTHING that happens during a drug trial has to be reported and included. Even if someone on the trial gets hit by a bus you could see 'sudden death' on there. I've been on Benepali and methotrexate combined for nearly 10 years now. They keep the RA in remission, mostly, and any flares aren't actually that bad. When I had to stop the meds because of a virus a few months ago and my RA came back with a vengeance, it reminds me that I couldn't live with that pain for any length of time, I just wouldn't want to continue. So for me, the RA meds have truly been a lifesaver, and I'm so grateful for it. It's a really expensive medication and they don't prescribe it lightly. If you need it, my advice would be to follow your specialists advice. They deal with these meds all the time. If you're worried, ask them about it.

[Nantocallum in reply to SueBaker]

Hi hun thanks for to answer it was the RA pharmacist nurse that told me about it all as like you said read everything and you would never take anything. so I never read up on them this is the main reason I was asking as she told me what she could she did say it can cause moles that can cause cancer so to check for them regular as if they caught early it fine methotrexate as no good for me I was awful bad on it so was taking of and now they want to try me on this haven’t received it yet she all so did say because I got to have a knee replacement op I would have to stop it for a few weeks 💁💁💁💁

[Evie3]

as others have said there are risks with any drugs. Personally the biologics/anti tnf meds have given me a quality of life I didnt have.

[Nantocallum]

thank you everyone for you reply and you have helped me a lot really appreciate it xxxx

[Doodlereggie]

hope you get on well with Benepali.I took it for a year last year with no issues at all.Have just changed a few months ago to filgotinib one tablet a day and that is brilliant.I have had ra for over 20 years and the drugs nowadays are brilliant,wish they had been around at the beginning.My rheumy only changed my meds because I have latent t.b.which was a bit of a surprise and he felt the JAK1 meds were less risky.Good luck and keep us posted.Benepali seems a wonder drug for many on this forum,so I hope you are added to that list!xx

[Nantocallum in reply to Doodlereggie]

Wow they sound good then tablets hope they work on you good luck xxxx

[FloozieDuck]

I've been on benapali for.about 3yrs and.done.well I take.hydrochloroquin as well,I think if you use suntan cream and sun hats it's no worse than methotrexate

[WilfDog]

Unfortunately, all drugs have side effects. It's important to look at your quality of life. I have been on so many different DMARDS, biologics and steroids over the last 50 years being diagnosed with sJIA at five years old. I've now been taking etanercept, a biologic, since 2008. I had to sign a disclaimer in case I contracted other serious diseases like cancer but my quality of life wasn't good. You have to look at the here and now and weigh up how your life is now. I had an 18-month-old baby to look after and could hardly pick her up and walk. I had no choice, but it was the right decision. There was a lot of speculation about biologics at the time, but it has since been reported that the cancer scare hasn't materialised, not to say that some haven't contracted it, but how is your life now? This is how I decided I would take it.

From being five years old my consultants have had to weigh up the risks with the benefits in terms of drugs and they have generally worked on the principle that it is better to have a good quality of life in the present moment. RA left untreated properly is also risky as it doesn't only affect the joints.

I do a lot of self-care and have done all my life with movement and now potent plant medicine as well as pharmaceutical drugs, to make sure I am the best me.

I hope this helps with your decision. Look up all the information about Benepali. I was on this for a short time. NRAS have lots of helpful pages on their website and there are lots of people in this group who are very knowledgeable. I hope you gain some clarity from other people's experiences. Good luck x