Benepali,,,not been my pal(i)

[Deminem]

Hi guys,

I'm new here and have already gained so much help reading all your posts.

I like many, was switched to Benepali in Feb 2017, after almost 4 years on Enbrel for my AS condition(I'm a 50yr female btw). I was shifted just via a letter saying this is happening, end of! Enbrel worked like a dream for me, I had no real issue with it at all, and was happily leading a normal life, on Benepali(stupid name, I'm rolling my eyes)it's quite the reverse, I can barely function after drip drip bad side effect building up without me even being aware that this was the issue. I absolutely do not think in my case it is a physiological effect at play as some have said. That somehow one is thinking or expecting Bene to be in any way inferior/less effective than Enbrel. I can say this with 100% confidence, as after 6 months on Bene I'm only today realising the connection and joining the dots, it hadn't even occured to me until today, so I can honestly say I gave Bene my best and unbiased shot.

My symptoms after almost 6 months on Bene are,

1 migraine for 12 hours,

sinus headaches daily,

muscle pain,

joint pain,

hair loss,

hot flushes,

night sweats,

insomnia,

fatigue,

weight gain due to increased hunger,

There are more bad effects but the rest escapes me as my memory is worse also due to lack of sleep and persistent headaches everyday. I'm now desperate, I have my routine Rheumy apmnt in 3 months but can't wait so am trying to get a sooner one. In the meantime I'm torn between stopping this drug cold turkey as it's really messing with me, and hanging on till god knows how long to get an apmnt before 3 months. Today I called the rheumy help line, left a mesg and a waiting impatiently for someone to throw me a bone. I really don't want to go through my GP to get a referral, as he is hella busy and it's wasting his and my time, I'd like to book directly but can't see the NHS is set up to do this...anyone know?

[Pat9442]

Such a shame when things don't work out. I began Benepali 6 months ago too. For me I have had no side effects and it works perfectly - but only for 4 days! I then spend 3 days back to square one with pain and stiffness. Has anyone else found this?

[Deminem in reply to Pat9442]

Hia Pat!

Thanks for replying. I'm so pleased you've had at least some success using Bene. Have you been on any biologics before or is this the 1st one? Maybe you can take something in tandem to help on the other days. It is possible with some biologics to have add ons.

I have an update! Lovely Lisa from the Rheumy help line for my borough called me back after I left an answer machine mesg this morning. She is going to set me up an apmnt to talk about how I can go forward. I'm so grateful and relieved plus surprised at how quickly I had a reply. The apmnt may take some weeks but least we have movement and a light at the end of the tunnel, phew!

[Pat9442 in reply to Deminem]

Yes it is my 1st biologic. I also take 2mg prednisolone. Unfortunately all the DMAdS were a night mare!

Hope all goes well for you

[Deminem in reply to Pat9442]

Thanks Pat!

Been researching a lot and it seems that Bene works well on ppl who haven't had other Biologics, such as yourself. From what I've read it follows a loose pattern that those of us who have taken Enbrel do worse on Benepali. Which I guess is why some say that it could be a physiological/nocebo effect.

[Deminem in reply to Pat9442]

Pat hi, me again!

Just remembering, one of my rheumy Docs, who is top of the tree specialist, who gives lectures and such told me that 3mg Pred is a "Non effective dose" If you are in the process of tapering down then cool, just ignore what I'm saying, and please don't stop bcz of anything I say. I'm in no way an expert. But staying on a low deemed "ineffective" dose isn't something I would want to stick at. Either I'd go up, or down and off it, but only after thrashing it out and getting the green light from my Rheumy doc obv... just saying!

D

[Pat9442 in reply to Deminem]

I would love to stop but rheumy categorically said to stay at 2mg until my Sept appt!

[Astral]

I was switched from enbrel to Benepali about 15 months ago. At the time I just thought ok, it's probably the same and for the first six months it was. However, for the next 6 months I was getting one flare after another so at my next appointment with the rheumy nurse I asked if I could go back onto enbrel. She asked the consultant who agreed I could and I am now back on enbrel. I never thought to ask at the time but as there was no problem getting back onto enbrel I wonder if they had others with the same problem. It sounds like your research is right and those who go straight onto benepali find it effective, but not so good for those who have already taken enbrel. I hope you can get an appointment soon and get onto something more effective for you.

[Witness2 in reply to Astral]

Thanks to everyone for sharing experiences on switching or starting Benepali. (Yes, the name annoys me too!). You've motivated me to keep a log from now on because it's so hard to remember what happened when once flares and side effects get going. I've injected once with Benepali and have missed the burst of energy I used to enjoy on Enbrel but I was only just over a virus so not attributing the fatigue to Benepali alone - yet! If only there was a marker for fatigue via blood tests.

[Witness2]

Deminem, just a thought as I just noticed your age and gender: all of your symptoms could be caused by a lack of oestrogen. My Gynae specialises in hormones and when she put me onto oestrogen only HRT (which carries hardly any cancer risk, it's the combined HRT that does) every one of the symptoms you describe stopped - except headaches which I still get, but milder, for 48 hours post injection, because I've cut out caffeine.

I came off Enbrel for a while because of those 'side effects' only to discover I still had them and they weren't Enbrel related at all, but due to being menopausal. Maybe worth investigating. I hope you find the answer for you and feel better soon.

[Deminem in reply to Witness2]

Hia Witness2

Ah your very observant, I like it!

I do feel I am having more than a few peri menopause symps it's true. I am still 49(always say 50yr old now to get used to it lol!)49yrs old is a bit earlier than national average of 53yrs for meno. I have seen a GP(female)about my options, she was quite passive didn't say much and just printed some stuff off the NHS net site :/

It's very hard to tell what is causing any given symptom, as you've said your fatigue could be this or that, we all understand this I'm sure. Re your situ, absolutely do make a journal of your symps, you may need them at the six month mark, as I did and Astral above also did.

The sinus headaches I feel defo fall into the Bene camp. As that isn't so much a meno thing, again headaches can be, but sinus issues, stuffed up nose, then headaches, which I have are also top of symp list for Bene, I seem to have combined sinus and headaches, eh, lucky me! Also I have an ear pressure that accompanies it.

The hair loss can obv be be meno related, but in the run up to this past month my hair was really growing well, bcz I was taking in more protein and also taking magnesium which in combo made my hair full and I was super happy with it. Then almost over night at six month mark on Bene it's coming out in quick time, a complete reverse, and not gradually, but suddenly and at the sides of my head, above ears area, which aren't naturally the areas that we(even male pattern)lose hair from, so not hormonal loss imo. Other symps could be this or that, it's true, but the veracity and timing of them gives me the gut feeling, that it's my AS/ASS is fighting back.(I sometimes call AS ASS, just to annoy it, wink!)But obv I can't be sure, and will defo ask my GP about oestrogen HRT. I wasn't a suitable candidate for regular HRT as my mother had breast cancer and died young, at my age now actually, 50.

Dem

[Witness2 in reply to Deminem]

Always trust instinct, I agree. One of the worst aspects of my RA is almost constantly trying to fathom what causes what. And the goalposts keep moving! GPs are usually hopeless as HRT so I hope yours is an exception. Take care X

[Deminem in reply to Witness2]

I'm being naughty, I didn't take my Bene!

Feel better for it at mo but who knows I may be falling apart in a few hours, yikes!

[Witness2]

You rebel you!

[Wishingwell]

Hi I'm new to this group. I've been on Enbrel for 10 years and just had switch to Benepali I only agreed as I was told i could switch back if any problems.

How soon did you notice your symptoms creeping back after starting please?

[Deminem]

Hia! Wishingwell

I wanna say between 2 and 3 months. But if I was clued up to Bene not being similar enough I may have seen/felt the red flags before hand.

Do keep a symptoms journal. For you and to show Docs, they need to take note of all our side effects for future use of this biosimilar going forward for other patients sake.

D

[Deminem]

UPDATE! So my rheumy nurse called on the blower. Good news is the registrar has signed off on me getting back to Enbrel(my doc's on holiday)yipeeeeeeeeeeeeee!

Bad news is it may take a week, yikes! The last shot of Bene I had was on the 2nd August.

Question, how long before your pain and swelling came back if you stopped all meds?

Cheers

D

[Deminem in reply to Deminem]

So, I'll just carry on talking to myself, wink! We all do it!

Damn me...or my ASS/AS bcz I had to take the poison pen once again(Bene I mean)

Last time mind you bcz my(Enbrel)night in shining pen armour is winging it's way back into my arms(or belly)next Wednesday yay!

I was flying high for two weeks exactly off any AS meds, then boom! Hello chest pain, back pain, arm muscle aches, ect, ya'll know what I'm talking about. I am not a sucker for punishment and knew I'd have to call time on my drug free existence when my AS came a knocking, and knock it did!

I took Bene back reluctantly and grudgingly, and went to bed. Once more I was visited by the lovely sinus headache at 6am, ah where have you been, you didn't txt or call for two weeks. Also this headache comes with a side of some ear popping or clicking sound in my left ear, like airplane pressure popping. Does anyone else have this side, and an increased hunger on Bene?

Oh yes D, I do! I feel like eating everything that I haven't already eaten...hey your talking to yourself again...you maybe eating for two but there is only one of you, get a grip, Ok drop the mike...........................

D

[richmoore123]

I started on Benepali just 3 weeks ago, my first Biologic for AS, and within a week I was having really bad sinus headaches. After 3 weeks I contacted my Rheumy team and they suggested Antibiotics. I'm just about to finish a one week course but still have pain and popping in ears.

Benepali has had an amazingly positive impact on my pain (nearly zero from 8/10 just a month ago) but I'm worried that I can't continue due to this sinus issue.

[Deminem]

Hia richmoore!

I feel your pain!

The struggle is real and so are the debilitating headaches, but no need to worry, that won't help or solve a thing.

I think you have to try and be practical with chronic illnesses, see how it plays out for another week at least. There are many other biologics that you can try if this one is giving you these unwanted side effects. Keep a pain/complaints journal so you can spot any triggers or patterns so you can refer to it when talking to your Rheumy again. I think the headaches themselves leave you having temporary cognitive impairment, so it's not easy to recall stuff, so jot it down.

I will say that finding the right meds for some of the illnesses we have can be a long ol road of trial and error. Not always, but it can take years to hit on the right fit for you. So your first biologic may not be the one you end up on. So strap in and try to lower your worry threshold if at all possible. That will make a big difference to your wellbeing in and of its self.

Peace out

D

[ohDearyme]

Hi there -did you change your biologic? I am on benepali and its my first biologic. I have put on nearly three stone and am the heaviest Ive ever been. I dont think I can do it anymore. I take the biologic on Sundays but considering not taking it today. obviously its a worry because I dont exactly want my body to fuse. I have talked to my rheumatology nurse ages ago - and we were meant to switch but nothing has been done.

[Deminem]

Hia!

Sorry to hear that your not doing well on Benepali.

I think the fact that you are thinking of stopping cold turkey is a testament to the fact that this biologic is not a good fit for you, and this is exactly what I did.

I wouldn't recommend stopping abruptly, but you have to decide this for yourself. That said, when I stopped taking it and called my rhumy, I found it gave a very clear mesg to her that they needed to act fast and help me get on another biologic. Didn't do this as a strategy, I was just at the end of my rope.

Luckily in my case it was a super quick response and turn around, made easier as i had been on Enbrel before Bene, and the committee decided to pass my request to go back to Enbrel. It took me close to a year to get over the effects Bene had left me with. Happy to say that now I'm back to being as good as I was originally on Enbrel. I'm sure you will get your health back on track too. Just keep in mind that doing so is a process, and this process can take a long time, we are all so different so what works for some doesn't fit for all.

D

[ohDearyme]

Hi hVe you found that you lost the weight? Thanks for your response by the way. I didn't see it!!