Biologics : Hi warriors 😘 Just a quick question for... - NRAS

NRAS

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Biologics

EnglishRose63
EnglishRose63

Hi warriors 😘

Just a quick question for people who are on biosimilars/biologics... Did you do extremely well on your first ones or did you try a few?

78 Replies

Not particularly well on the first one. Brilliantly on the second one, for a while. About to move on to my third 🤞.

Hessie5
Hessie5 in reply to whaleroad

Good luck Whaleroad - third time lucky🍀

I've been on my first one , Cimzia, since 2014 and have done very well on it so far.

Fab! Only a few more weeks to wait for mine

Hope yours works first time too 🤞🐰

Me too MadBunny, had enough now 🤞

Yes I'd got to that point.

Been on my 1st biological benepali for nearly 2 years and fingers crossed up to press doing fairly good, still get bad days but don't we all 🙄

Started on Humira in 2006, my first biologic, worked like a charm. Was switched to a biosimilar when they were introduced, Amgevita, was worried at the time but no problems so far.

Was on humira for eight years. Worked really well then I caught shingles and it stopped working! Now on baricitinib and after three months it has started to work. So don’t worry too much be a RA warrior and pick up your biologic sword 😀

Haha love it!!

I'm 10 weeks into benepali, it started working quite well and now it seems to be going backwards but I'm in hope it will kick back in . Rhematology giving it till May and then I will have the change to another; They told me not to worry as lots to try 👌

Hope you are doing well on your medication 💊

“Lots to try.” 😂 Pick n Mix meds. Brilliant! Fingers crossed your benepali comes back for a second wind, though x

Love pick and mix 🤣

Same situation, 3 months in and going backwards a bit at the moment! Fingers crossed it picks up again soon

I'm on my 4th and have been told it's last chance as they are running out of options . 😂🙈😢

Really, hope thats not so x

What have you tried hun?

I started out on Cimzia about 5 years ago and since I have other issues I thought it was not working so my dr finally agreed to switch me to simponi aria. What a mistake. I have been on simponi aria for 9 months and tried to go back to Cimzia but my insurance would not allow it. I wish I had stayed on Cimzia. While on simponi aria I was and still am horribly stiff all day and started breaking out with psoriasis again. I am starting Orencia this week. I hope it works. Anyone been on Orencia (abatacept)?

EnglishRose63
EnglishRose63 in reply to crperk

Can't you get yours on the NHS crperk?

Pasjc
Pasjc in reply to crperk

Im on Abatacept been on it about a year im fine you realise how well you are when you gave to come off it for some reason ie vaccine it soon kicked in again good luck

crperk
crperk in reply to Pasjc

I have low back stiffness to wear I feel like I can hardly move my muscles over my bones. It's the weirdest feeling plus it is painful. I am hoping the Abatacept will help with that stiffness and pain. Does your arthritis cause you to be stiff and very sore to where it's hard to move some days?

Hi englishrose

My first one caused more problems than it solved I’m on no2 now after a brilliant start things are slowly going down hill . Pain and mobility much better but fatigue and sweats are again consuming me . Waiting for blood tests and an appointment

EnglishRose63
EnglishRose63 in reply to J1707

I think I've chatted to you before luvvy, what was your first one?

J1707
J1707 in reply to EnglishRose63

Elerzi bio similar entanercept. I’m now on Baricitinib x

It’s pretty standard to go through a few. But you never know! Good luck xx

Yes I stuck with first one which is Benapali through side effects and they did go and its working well.

That is often the Answer....stick with a drug you might be doubtful about...I have done that too & lo & behold it worked !

I personally tried more than a few as my Rhematologist was explaining he was looking for one that targetted specific things for me - I.e TNF -also many dropped my neutrophils too low.

Blimey, I'll have to Google neutrophils. I'll be a medical scientist before I know it 😂

Oh sorry 🤣 that to do with my white blood cells

Im on my Third. The first one was part of a Trial and that was the best one for me. The second one was better for one of my conditions and not the other and the third one im on is the same but the other way around for my conditions. Ive been told i will only get one more Biologic to try if these dont work so will stick with it for now.

If they don't work isn't there an option for you to try JAK thingymibobs?

J1707
J1707 in reply to EnglishRose63

Hi again .. Baricitinib is a Jak inhibitor. It likes me much better than elerzi. Rheummy is thinking of increasing my mtx from 15mg to 25mg to see if it helps x

EnglishRose63
EnglishRose63 in reply to J1707

Hi again lol.. Ah right I thought they were biologics/biosimilars.. Its really confusing 🤔

J1707
J1707 in reply to EnglishRose63

It takes time to unravel the mysteries of RA drugs . 5 years on I’m just getting the hang of it .😁mind it doesn’t take much to befuddle my brain 😂

EnglishRose63
EnglishRose63 in reply to J1707

You're not kidding 😂So JAK inhibitors are for patients who failed on bios?

J1707
J1707 in reply to EnglishRose63

Not necessarily.. JAKs are relatively new drugs that target differently to Biologics ( I’m not good at breaking down the information maybe someone can explain better than I) the best thing is they can come in tablets rather than having to inject.

EnglishRose63
EnglishRose63 in reply to J1707

Ah I see, thanks luvvy

The Drug trial i was on about ten years ago was Tofacitinib which is a janus kinase (JAK) inhibitor. That was the best one for me but the trial was stopped after 5 years due to the European drug agency wanting a 7 year trial and Pzizer didnt see the point it funding it for another two years. How i understand it they work like this. If your immune system was a TV and you want to turn your TV off Methotrexate and the like turn the power of by the main power grid. Biologics turn the TV off by the fuse board in your house and JAK inhibitors turn the TV off by the Switch on the TV. I was moved to Humira which was ok and about 70 effective. I'm now on Hyrimoz thats has reduced my Arthritis by about 90% but not worked as well on my Psoriasis.

Now I like that explanation 😂

Glad to be off assistants 😆

Hello fellow warrior..I started on Imraldi and no change so on Tocilizumab for last10 months, cant say I've noticed life changing improvements, slightly reduced hand pains but not really sure what to expect...maybe others can illuminate? Do some of you 'forget you have RA' ?

I have damage to both ankles and knees, one of the poor sods on waiting list for TKN.

Get strange muscle pains (as if I've been up Ben Nevis) and stiffness in legs. life is easier on Meloxicam but reluctant to take too often

would love to hear if this rings bells with others but perhaps I should do a separate post?

thanks in anticipation

EnglishRose63
EnglishRose63 in reply to Trutta

It's entirely up to you Trutta, start another thread and it'll be seen by more people maybe. I understand about muscle pain, I was told it doesn't coinside with ra, but who knows..

Very well !! Some stopped working but then i went on another ine

My first didn’t work sufficiently well for me but my second is brilliant!

Rituximab: 1000 mg

First iV infusion caused a bit of a rash during infusion. It was stopped and saline flushed- restart at slower drip rate- all fine!

Had a totally pain free 3 months on Imraldi first then it stopped working. Now been on Cimzia for 6 months plus MTX, no change at all. Am reliant on meloxicam to make life bearable.

On embrel for 4 years absolutely brilliant, then changed to biosimular benipali, didn't work. Went on to Humira nearly as good as embrel but have now been taken off and given another bio simular idiaco (sorry about spelling), also not as good, I may stop it as I don't like the side effects.

The first one worked for 2 weeks, incredible quick relief, then stopped and did nothing other than make my hair fall out. The second, I had an allergic reaction to, but it did help, hair still fell out. Third one is doing a great job so far, my hair is regrowing too.

Hi english rose63

Unfortunately for me my 1st biologic didnt work so hopefully my next one will

Like all RA drugs it’s a bit trial and error. For some they get lucky first time others have to try a few before they find the right one. I tried Cimzia and adalimumab but neither worked for me. I’ve now been on Rituximab for 6 or 7 years and it’s working well.

Hello,

Started on Rituximab in 2008. My first biologic and am still on it. A life changer for me.

Best wishes Pam

I felt much worse on Amgevita so stopped it after 8 weeks an

Only 4 th one worked and still on it after a few years.it’s not perfect but helps

Oops, posted before finished! Stopped Amgevita after 8 weeks as each injection seemed to cause worsening joint pain and general nausea. I’m now waiting to get Etanercept delivered. (Not very patiently!)

Summerrain14
Summerrain14 in reply to MrsSBJ

I have just started Amgevita. One month in now and was really interested to read your experience particularly with the nausea as I have had awful nausea this week after my injection. I’ll keep my eye on it.

MrsSBJ
MrsSBJ in reply to Summerrain14

I’m not sure the nausea was a reaction to the Amgevita. It feels more like part of the disease process because it comes on worse with the worst days of hand pain and sleep disruption due to stiffness. It’s so difficult to fathom out the whole illness-I just know that I’m not well. I do hope it works better for you. It all seems so random! And it’s hard to keep being optimistic some days.

First one worked within three weeks. Still taking it three years later. 😊

I did well on my first ive still had a few flares but on the whole its good couldnt get out if bed without it

Hi I started Entracept in August it didn't really kick in till about February time had a few issues but had to stick with it as I couldn't get an RA review...turns out I'm glad I didnt as things have settled down and moving in the right direction.Stick with it and check the batch numbers apparently if they have been out of the fridge too long or short shelf time it can limit its effectiveness.

Good luck

That's good to know about the batch numbers, thanks luvvy.

I’ve been really lucky. Started my first biologic (Amgevita) 9 months ago and felt an improvement within 24hours which continued to grow. It working really well for me so far. Good luck with finding the right one for you. 🤞🤞

I was lucky. My first one was a hit👍. Taking it since 2012and it's still working well.

I am on my third biologic. My consultant told me that they have to find the right biologic for you. RA is caused by different cells in different people causing your immune system to overreact. For example mine is caused by my T cells and Abatacept kills the T cells. I said to him if they could sequence everyone’s genomes then they would get the biologic right the first time. He wasn’t too keen on that as it would put him out of a job🤣Anyway when he had explained all that it made perfect sense. Hope it has helped you a bit too EnglishRose, best wishes.

😂I bet he's quite worried now!Yes it's helped me a lot thanks. I can't believe how many there are.

Hi there, I was diagnosed 12 years ago... I’ve been on Enbrel, Humira, Rituximab, and started on Tocilizumab at new year. I fare pretty well for the first 12-18 months or so then I seem to build up antibodies as I then start with monster flares again which can only be brought down by a steroid injection. Shame there isn’t a drug that works as effectively as a steroid injection but minus the long term effects that steroids have

I started my first biologic (Imraldi) last July. It didn't have any effect, in fact my RA symptoms got progressively worse while I was on it. By December I was put on Baricitinib which did seem to work quite well for the first few weeks. However, I have been going downhill again. I suspect it's since having the 2 covid jabs in Jan and March - I had the biggest flare the day after the 2nd jab. So I'm now contemplating what will happen next. My next appointment (telephone) isn't until the end of June, but that was arranged on the basis of seeming to be doing quite well on Baricitinib. It's a real emotional rollercoaster!

I have ben on Etanercept now for Nearly 7 years and I have been fine on it. It does control my RA which I have had since I was 22 years old I am now 74. The only pain I have now is the OR in my knees which both need to be replaced. Be positive English Rose63 and I'm sure you will find one that suits you.

Good luck.

On my third one!

I started cimzia last oct after a 9mts of flares after having my daughter...mtx didnt work as well as it did first timw...since oct 2020 im a new woman....fingers crossed it stays this way.hope ur experience is lile mine!

1st one benpali awful off it within 4 weeks due to start Baritcitnib soon

I'm on my 5th biologic, Abatacept....have been on it for 2+ years, and as good as have ever been. Hope you find the "one" soon, good luck.

I've just started the fourth. 🙈 1st worked but not well enough, 2nd bad side effects, 3rd stopped because I had a bad infection...but not sure it was anything to do with biologic. They stopped all meds after that now on 4th biologic and mtx. Still on pred....nothing else seems to work. 😢

Tried Cimzia last year but it made me feel much worse, terrible swelling and soreness around my eyes, which actually happens anyway with the disease but worse on Cimzia. Now 7 weeks into Amgivita, no improvement yet, trying to remain hopeful! Desperately need some relief from the fatigue particularly 🤞🏽

I'm on my 1st biologic about 20 years . It's still working well .

Wow that's good. Did it work straightaway?

No it took it a while to work . It was infliximab I got infusions 6 weeks and then 8 weeks then 6 weeks . For about 3 years then it was every 8 weeks ,now since covid I am injecting myself every 2 weeks with resmima . I also got off the steroids . Hope yours works as well for you 🤞

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