New biosimiliar to Humira, Imraldi

[Endless]

Hi everyone, I’ve not posted on here previously, however I have been reading and learning from you all for sometime, thank you for this forum. I’m currently on Humira, I’ve only been on it for three months but I received a letter and documentation this week from the NHS stating that I’ll soon be changed over to the biosimilar, Imraldi. I understand the reasons why, I just wondered if others had also received this and whether you’ve tried it yet and if it’s as effective?

[popsmith1874]

I'm in the same boat Endless gave 3 Humira left then onto the bisomilar like yourself,hope its as good as the Humira has been wonder drug for me , Merry Christmas and a Happy New Year xxx

[Endless in reply to popsmith1874]

Yes I have three left in the fridge too, then I expect I’ll try this. Hope it’s good, only just beginning to feel the benefits of humira...

[CherryClift in reply to Endless]

Hi there, how did you get on? I have been on Humira over 10 years and am about to change to Imraldi? I am rather apprehensive?

[Endless in reply to CherryClift]

I haven’t been switched yet, still on Humira

[Nessa28]

Snap I have four in the fridge so at the end of January I'll be with you and many others xx

[CherryClift in reply to Nessa28]

Hi there, how did you get on? I have been on Humira over 10 years and am about to change to Imraldi? I am rather apprehensive?

[sweet-pea1]

Hi we got our letters a couple of weeks ago start the new ones in January I have been assured by my Rheumy team that it is identical to Humira just made by a different company as the old contract had come to an end,this opened the door for others to tender for the contract

[Simba1992 in reply to sweet-pea1]

This ofcourse is not true it is not identical. Made of an other molecule. The good news however seems to be that its efficacy compared with humira has shown to be a bit better. Hope it will work well.

[CherryClift in reply to sweet-pea1]

Hi there, how did you get on? I have been on Humira over 10 years and am about to change to Imraldi? I am rather apprehensive?

[sweet-pea1 in reply to CherryClift]

no problems at all in fact I find the new style syringe easier to use than the Humira syringe

[PFKAAde]

The last time I saw the rheumatology nurse at the NHS trust I am under she told me they were currently deciding whether to switch to Imraldi or just stay with Humira. The reason they might not switch being all of ‘the hassle involved switching to benepali’.

Apparently it didn’t offer the savings they’d hoped for and was an immense PITA to swap. I haven’t heard yet what they have decided.

🙏🏻

[Bessieboo1]

I had my first Imraldi injection last Saturday. No side effects so far and the injection itself was 100% less painful than Benepali. Fingers crossed now that it works as not felt so good on the Benepali . Good luck with your switch over. Xx

[CherryClift in reply to Bessieboo1]

Hi there, how did you get on? I have been on Humira over 10 years and am about to change to Imraldi? I am rather apprehensive?

[Bessieboo1 in reply to CherryClift]

I’m doing quite well, I find for a couple of days after the injection I feel really exhausted/ general aches and pains and then for about 10 days feel quite well and energised but then 2/3days before the injection is due I feel really exhausted and achy again. Positively the injection isn’t painful, I am getting about 10 good days and my bloods are good as well. I see my Consultant tomorrow so I don’t know if she will alter anything . I was on Enbrel then Benepali before hand and didn’t get on with Benepali so good luck with your swap. Xx

[Endless in reply to Bessieboo1]

that's interesting, I feel like this on Humira too. exactly the same. Exhausted first few days after injection, then not too bad for the next 10 days or so, and then in more pain before next injection. I've added in Leflunomide as well now, to see if this can help eliminate the pain

[Bessieboo1 in reply to Endless]

Interested indeed!!I couldn’t take leflunomide due to severe headache and light sensitivity, I tried Sulfasalazine but my liver didn’t like it!!! I had methotrexate but felt ill for 4 days out of 7 so after about 2 years I decided enough was enough but I am on hydroxychloroquine which I have been on for a few years now with little problems. It would be nice to have some cover for the 4 ish days when I do feel crappy but I suppose I am lucky at getting some good days when you read what some people go through on here. Xx

[Endless in reply to Bessieboo1]

I have tried methotrexate both orally and via sub cut, didn't get on with it and also I've tried sulfasaline and that wasn't too great for me either. I'm waiting for an 'urgent' appointment to have my hips injected (into the bursa) with steroids under ultrasound. I've had this in one before and it was incredibly painful but helped for a while once I recovered. The idea being if I have these injections, I'll be able to access physiotherapy but I've been told the wait is 15 weeks for an urgent appointment... it's debilitating, I can't do anything without pain there. Not sure what to do now.

[Bessieboo1 in reply to Endless]

I’m having an MRI scan this evening as I injured my knee going over a stile a month ago, it is swollen and deformed!! I’m on pain meds including OxyContin, Oxycodone and etorocoxib would rather not be on them but if I wasn’t then I would be giving in to a rather sedentary life which isn’t me. I have 2 dogs and work part time, I’m very stubborn and both things keep me going. Best of luck with your injections and physio, hope you don’t have to wait to long. Xx

[CherryClift in reply to Bessieboo1]

Thank you so much for reply xx

[Bessieboo1 in reply to CherryClift]

Best of luck with your change of meds. Xx

[net2012]

Recently had an appointment with my Biologics nurse and we discussed this.I am on Humira, have been for the last 3 and a half years. It works for me very well,am in drug induced remission.

They are hoping to keep me on Humira. They expect the price of Humira to come down. It is my consultants and my own wish to stay on Humira,and this has been noted.I think I read that they have to take account of your wishes.

My nurse said where there has been changes,which was from Enbrel to the bio-similar,patients have not been doing so well, but new patients straight on to the biosimilar have been doing well.

I was allergic to Enbrel,and for me this is the worry that it could happen with a switch.

[Endless]

That’s very interesting. I haven’t had a consultation since starting Humira, which was in Ocotober. I expect, although I don’t have an appointment, to see my consultant early 2019. I only received documentation through the post that I will be changed over. The active ingredient is the same as the active ingredient in Humira, so I don’t suppose it will present problems, but I suppose I will find out.

[Bessieboo1]

Have you started Imraldi yet??

[Endless]

No my new delivery was of Humira, have you?

[net2012]

I have have had the blooming letter from Hospital Pharmacy about switching to Imraldi from Humira. To be honest a bit annoyed, as it is a blanket letter , stating all patients are being switched from Humira to Imraldi.

So what happened to our personal wishes about staying on same drug!!

I think I will be putting a phone call in to my rheumy helpline on Monday about it.

[PFKAAde in reply to net2012]

Ah that’s a shame. I just saw your post about staying in Humira and thought that explained my own team’s stance - patient’s wishes, reduced costs, hassle switching etc. Maybe they have all been forced to switch?

Might be that, like you say it is a blanket letter - they will try to switch everyone and the one’s that have issues (complain the loudest!) might get switched back at some point. And that is probably the ‘hassle’ that my Rheumatology team were talking about.

I hope it works for you.

🙏🏻

[Endless]

Yes that sounds like the letter I received but when I put in a new request with HAH they delivered more Humira. I was expecting Iramaldi because of the letter, however I haven’t seen anyone from the hospital since I’ve started on Humira from October last year, so I’d like to think they may wish to speak with me first but I don’t know

[PFKAAde]

Not sure of the details, I was told they’d ‘done a review’ and the outcome wasn’t that straightforward. I got the impression that the process of switching people was a factor and it just didn’t bring them the savings they’d hoped for.

They hadn’t decided what to do about Humira at that point, don’t know if that’s changed.

🙏🏻

[nomoreheels in reply to PFKAAde]

Definitely something you need clarification on Ade, seems Humira is the singular most expensive med & that the NHS are targeting re the use of it's 4 biosimilars. england.nhs.uk/2018/10/nhs-...

[PFKAAde in reply to nomoreheels]

I assume they will clarify their position when they make a decision. I also have no idea how much autonomy each trust has making these decisions, but the way it was described to me by a nurse specialist was exactly that - they haven’t decided yet.

If and when I hear any more I’ll try to remember to post it.

🙏🏻

[net2012]

Thanks for that Endless I will not only ring rheumy helpline I will ring HAH as well to check what they are going to deliver.

[net2012]

I spoke to HAH this morning. My next delivery is due,and I asked what I would be receiving. They said Humira, and that I have 2 prescriptions of Humira. Not too surprised as I believe the consultant usually does a block of prescriptions covering 3 or 6 months. They have not yet received a new prescription, so still in the dark.

Waiting for a call from Rheumy department, will let you know the outcome.

[Endless]

Well, that's good news really isn't it? That you're still on Humira. I need to inject this Wednesday and after that I'll give HAH a call for a new prescription and ask them the same. I understand the bio similar has the same active ingredient as Humira, so perhaps the change won't be too hard, I'm not sure. Suffering a bit this morning with pain in my knuckles, which I haven't had for some time, I am not sure why.... this illness...

[net2012 in reply to Endless]

Yes good news... gives me a bit of breathing space to have discussion. Sorry to hear that you have pain though.

[Endless]

Yes, good to hear that. Thank you, I woke up sneezing, so have a cold on the way, maybe it's all of that... hopefully it will go soon.

[Endless]

Just to say I placed a new order with HAH yesterday and they will be delivering Humira - no news in the biosimilar yet and I’m quite pleased about that.

[net2012]

Hi Endless hope your cold is on its way out. I came down with a virus on Saturday and it has knocked the stuffing out of me. I got a call back from the head nurse at Rheumatology, and she checked out the last report from my appt in December,and yes it states that I would like to stay on Humira. She asked me to ring the pharmacist on the letter I was sent about the switch,and also to ask the pharmacist to send her an email at the end of the conversation.

So basically the Pharmacist just quoted things that were in the letter and was evasive each time when I quoted about shared decision (which was 3 times). Thirty minutes later I received a call from the Rheumy nurse, and she said she had just received an unhelpful email from the pharmacist (he had said this patient does not understand she has to switch) !!!!!

My nurse was really mad with pharmacist!! I nearly had the giggles. She has told me not to worry, she is going to make me a priority appointment as soon as my Consultant has come back from holiday , so another wait and see.

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NRAS has been working with NHS England, alongside other patient organisations to design resources for patients and health care professional's on the topic of the Adalimumab biosimilars being introduced into clinical practice.

We would like to capture your views on how, if you’ve been switched to a biosimilar of Humira, that process has worked and been handled.

Please help us by completing this 10-15 minute survey: bit.ly/2I1WfbX

[If you have been asked to switch from Humira but have not yet done so please come back to complete this survey after you’ve made that transition.]

[Damien123123]

I was on Humira for 8 years and it worked great. Had two injections of Imraldi so far after change over and fatigue is back, back aches, constipation etc etc. Seen doctor today and he took me straight off Imraldi... I read there is 3 other varieties so hoping to me of them works or even better if they just give me Humira as that worked for 8 years great! Sucks that they changed!

[Twins4]

I was on humira every 10 days for 5yrs but Irish government sites budget cuts n I was put on Huelo which was no good as pain increased. Now they have me on imraldi n it's just as useless. I was also on methotrexate with humira but it made me sick. I now take salazopyprin n it worked perfectly with humira. However it's not as effective with huelo or imraldi. You have to be rich to be sick not matter what country you live in.