Benepali side effects,anyone else experienced these?
Posted , 10 users are following.
I was on Embrel for several years and it was amazing, I felt the difference within 2 hours of the first injection, then last year I was changed to Benepali because of the cost and was told it would be no different. First there was the itching, mainly my face, neck and scalp, when I told the rhumatologist she said the skin gets drier as you get older but have always used a moisturiser, then I started to notice the pain is so much worse after injecting, gradually getting better each day ,puts me off doing the next one, I also seem to get a lot more headaches and wake up with a sore throat the day after injecting ,does anyone else experience these things? I would really like to go back to Embrel as it was the only drug I've had over the last 30 years that really suited me.
1 like, 17 replies
EileenH beverley_18828
Posted
Tell your rheumy - the substance is the same but it is well know that the so-called bio-similars aren't exactly the same and patients so sometimes react differently.
When I googled it I noticed that in Ireland Pfizer cut the price of Enbrel to match that of benepali - which suggests it may not be as big a cost saver as they think. If it doesn't work as well for you - it certainly isn't cost-effective is it?
beverley_18828 EileenH
Posted
bill12447 beverley_18828
Posted
I am moving over to Benepali, like you I have been on etanercept for a long time, at least 10 years, brilliant results and no side effects. I am wondering what the transition will be like, and like you if there are any side effects, I will report back via the thread when I move over to Benepali
Regards
Bill
beverley_18828 bill12447
Posted
loulou282 beverley_18828
Posted
Im just waiting to go back on Embrel after going on to Benapali and the side effects being worse than the methotrexate, headaches, fuzzy head, flu symptoms, extreme fatigue and not only them but I had trouble with the administration of it, it done my head in....
beverley_18828 loulou282
Posted
Hi Loulou, sorry to hear you've had so many problems and it's good that they are letting you back on the Embrel, I really hope that I can have it again too, I was told it was exactly the same but it certainly isn't. Methotrexate didn't suit me either, I was told I had to take it with the Embrel, I ended up with fibrosis of the lung, they said it was associated with the rhumatoid and not methotrexate but stopped it anyway, not sure I believed it but what can you do?
EileenH beverley_18828
Posted
i wouldn't believe it - methotrexate DOES lead to lung disease too. You might find this interesting - and worth giving to whoever told you it was the RA not the mtx.
http://www.arthritisresearchuk.org/health-professionals-and-students/reports/hands-on/hands-on-spring-2009.aspx
beverley_18828 EileenH
Posted
Thankyou Eileen, it's an interesting article, I will print this out and take with me on my next hostpital visit, I did ring them about the benapali side affects and agreed a temporary break in the treatment to see what happens.
tony53417 beverley_18828
Posted
my wife has had bad experience with Benepali.
Sleeplessness, Small Red ‘dot’ type spots which were very dry.
Feeling full after eating a small amount , then indigestion.Hair Loss
weight loss , and feeling Anxious. I ask the Hospital of course .
email etc . Phone calls . ‘ it’s unlikely to be the Benepali ‘
Her weight was far below the 62.5 klg , by the way .
after an appointment 9 months after starting it . She was told to stop it .
7weeks later she is getting back to her old self .
it think this Drug my be suitable for many people but read Package B
makers warnings . Many of the symptoms are clearly noted and feel it
has to be monitored very closely and symptoms taken note of
beverley_18828 tony53417
Posted
Hi Tony
I'm pleased to hear I'm not the only one who's experienced these problems with Benepali, I was wondering if it was my imagination so it's good to hear you wife is better now that she no longer uses it, I've just started back on my Embrel, first injection yesterday, it would be fantastic to get a good night's sleep, I didn't put that down to the Benepali, so hopefully that's why I haven't been able to sleep. The headaches I was waking up with, they said was because my blood pressure was high, I'd never had that problem either, before, in fact it used to be on the low side, so maybe that will correct itself too, thankyou for putting my mind at rest and I hope your wife continues to improve.
tony53417 beverley_18828
Posted
Hi
my wife is about to start on Humira
lets hope !
The only thing positive re Benepali , it has done its job re swelling and pain.
side effects horrendous. Even the skin between her fingers became sore and thin ? Certainly back to normal now. Little innocuous moles became more pronounced and darker. I understand it is not. For Everyone.
felt stranded when I raised concerned and was told Oh it's not Benepali.
Then Oh try taking every 10days or even2 weeks? Hence halving the dose.
i feel certain it was a case of Over Egging The Pudding.
but what do I know ? Hope you Humira is a success .
beverley_18828 tony53417
Posted
Hi Tony, I'm sure they think we are idiots who believe everything they tell us, so much easier to find information these days, best wishes to your wife, hope the Humira works for her.
tony53417 beverley_18828
Posted
Post if your Odd Symptoms improve , intresting to know
Sleeplessness etc improves . Best wishes .T
beverley_18828 tony53417
Posted
Hi Tony, I'm not on Humira, I've gone back to Embrel, Benepali was the cheaper form, they told me it was the same, I never had side effects with Embrel, but I did with Benepali, I've had 3 other biologics, 2 by infusion and one was a fortnightly injection, Embrel was the only one that worked for me, I'm hoping it still does.
tony53417 beverley_18828
Posted
Almost a milder form of someone unlucky enough to have Chemo
look it up your not going Nuts . Chemo Brain is well known symptom.
ie Fuzzy Head . The Chemist s at Health Care at Home. Know a little more that is published I'm certain