Started on Etanercept (trade name Benepali), supplied by Sciensus, about three months ago. Since then, I have put on a stone in weight and my (usually effective) methods to lose weight have had no effect.
It does seem to be good for my RA and the pen is easy to use (although I get itching around the injection site for several days after and my rheumy nurse has said ‘take antihistamine’) .
Anyone else tried Etanercept? What side effect(s) have you experienced?
I’ve been on benepali for 7yrs, have not had any side effects or weight gain. Often it not the med causing weight gain directly. When it calms your inflammation down, your body uses less calories, as it’s not constantly fighting inflammation. If you continue eating as you did, you will slowly gain weight unfortunately.
Hi Harry_20. Etanercept was the second biologic I tried (some 15 years ago I think) but I didn’t have any problems with weight gain whilst on it for about three years. It was pretty effective until it wasn’t and I moved on to something else. Over 34 years I’ve had practically every drug prescribed for RA but none of them have increased my weight, even steroids which I’ve been on all this time. (Maybe just lucky…….).
A stone in three months seems excessive and something worth checking out as you couldn’t keep increasing at that rate for any length of time and stay well. Runrig’s theory re inflammation absolutely right and worth looking at your calorie consumption but something else may be going on so perhaps check with your rheumatology team.
Thanks for that.
I use it and no real side effects re weight but it’s affecting my kidneys although I have CKD so it doesn’t apply to anyone else. I’ve been keeping a blood and record of injections for over two years now and tbh the benefits far far outweigh for me an annoying and weird effect.
Thanks, I’ll need to think again about the weight gain thing.
I’ve been on it for 6 years or so and the only side effect I had was sinus problems for a while but that went away. Not had any weight gain.
yep I’ve put on weight with it but I’ve put on weight with every drug. Always says small chance of weight gain . I’m never in the minority. Like you never loose weight have tried everything from fasting to Mediterranean diet .
This disease is a gift that keeps on giving
Maybe as you are feeling so much better you are unconsciously eating more? Try writing down everything you eat. ..,,& if those calories are much higher than you thought….something that simple could be your answer?
Happened to me too. Also just happened again with Simponi. It's really frustrating and the weight seems to come on very quickly. I've now stopped the simponi due to a different side effect, but I'm really struggling to drop the weight. Wonder how you can get your metabolism back to how it was pre drug?
Have you had your thyroid levels checked? Could be numerous things. Feeling better so eating more, having bad pain for a while so not moving as much...I'm on Benepali and I started to eat more not being in horrendous pain but I'm now watching my calorie intake with the app My Net Diary. Ive lost a stone so far, slowly at around 1 to 2 pound a week but that's better for you than it dropping off as that can cause lots more problems. The app is great as you can scan the barcodes on the goods you eat.
If you really can't loose weight watching your diet carefully then you should see your GP.
All the best.
hello Harry
After 3 years on Benepali I have experienced a slow but steady weight gain. My appetite has never been great and since RA I eat less.
I have always watched what I eat and kept to a similar “healthy” diet avoiding all processed foods.
As my weight increased I have tried to balance it without success - currently about half a stone from where I would like to be.
Just as you, usual ways of controlling it don’t work. My theory is that the biosimilars change our metabolism and however hard we try, we can’t change it back.
The Plus side is remission although I have fallen out of remission very quickly when advised to withhold Benepali due to a respiratory infection . I am just about to restart the treatment so hope it will still be effective.
My feeling, as recently expressed to my GP is that ,since RA, I find it more difficult to listen to my body.
Previously, it always told me what to do - now the signals from my body to my brain seem sabotaged !
Hope you can find a way to a new balance.
Also gained weight but found it really good for a long time wish I was still on it
Yes it changed my life, I can now walk without a stick. But I persevered. I've been on it for about six years and for nearly a year there was no effect. I persevered because I had no side effects, like the baldness and other effects I heard about from other patients. It's a slow burn but a wonderful drug. Good luck!
Thanks. That’s encouraging.
hi I was on Benepali for a year recently,but did not gain weight.It did not work for me so now on JAK filgotinib still no weight gain.Actually I am only 7 stone and look like a bag of bones,would love to put on a stone!Was on prednisolone for over 20 years which probably kept me a better 8 stone,now reduced to 3 mg a day,weight just dropped off as reduced.As recently borderline diabetic,and not wanting to start more drugs,cut out all sugar,cakes,sweets etc so healthy diet but too thin.Will try and get the balance better soon!!xx
Sorry you’re struggling so much. RA on its own is bad enough. Remember we are all in it together!
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