There I was smugly living in ‘remission’ after a couple of years on Humira (in addition to MTX 20mgs weekly and HCQ 400mg daily “) - changed to Imraldi (NHS cost directive) which was about 6 weeks ago - now suffering most of the fatigue, pain and stiffness symptoms I had pre- Humira - as well as almost continually sore/ulcerated mouth and tongue.
My suspicion is the Imraldi - despite having the same active ingredient is not up to the job as wax
Having bloods on Monday and contacting my Rheumatology team.
Any comments will be so gratefully received !!
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Peejay64
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I so far, have managed to fight this. NRAS are asking for feedback on this very subject. It seems to be common thing people changing and going downhill. Did you know that the savings are only £71 a month? Humira is £704 per 2 pens, Imraldi is £633. Make sure you fight and NRAS know. The CEO is also asking for feedback. I think the fact they are asking sets alarm bells ringing for me. Good luck xx
Thank you for your reply .....I will certainly be fighting! Just hope this episode hasn’t upset my very positive ‘relationship’ with Adalimumab in the longer term. And I will contact CEO NRAS!!
I get really angry when I hear this. I am all for biosimilars, and saving the NHS money.
However, to disrupt people like yourself, who have regained their life through a particular biologic, is to me sheer lunacy. If the wheel don't squeak, don't oil it. Many of us have struggled to find a treatment that works. To interfere in this is totally inappropriate. I would like to see figures for the additional costs when, as in your case, the change drastically misfired......especially as the saving is not massive.
Use biosimilars when starting treatment, but don't risk disturbing treatment that works......and never change medication without informed discussions with each patient.
I do hope that NRAS have changed their stance, and now support patient choice in this situation
I so totally agree with your sentiment ...and questioned the efficacy at the time ....sadly I succumbed to the pressure to change as sort of felt it was change or end up without the Biologic medication which quite frankly changed my life...... Just as so many others have found. Given it is supposedly the same active ingredient I really expected ‘no change in current condition’ ....How wrong I was to be so naively positive in my expectation!
Thank you for replying - your response is so helpful in focusing my challenge to be restarted on Humira....
I was able to stay on Humira after a request to my rheumy. The hospital pharmacy agreed for now as I have many other health problems to deal with and quite simply Humira works for me. The rheumatogists don’t need all the extra work this blanket decisions made by the hospital trusts have brought.
Thank you Gigi71.....you give me hope that I will get back onto what worked for me ....by being vocal and reasonable in my request....if not ...I will just have to ‘shout’ louder!
I do wish you luck, I feel I am not responsible for the crisis the NHS is in, I have family members who have worked in the NHS and my very brave granddaughter who is a second year student nurse, the amount of waste is unbelievable, too many chiefs. I have been on Humira for 11 years with erosive sero-negative RD, this has been a wonder drug for me and my rheumys know this too. Why change what works. All the very best. X
Hi Gigi71 - thank you. I am a retired nurse of many many years service to the NHS. It was probably my sense of loyalty an£ need to help others that prompted me to ‘give it a go’. The argument used - if cheaper options work that will leave more opportunities to help others’ ....😩
You sound a very caring woman, we do however have to think of ourselves too. Having read on here so many people who changed from Embrel to a biosimila, had so much trouble with it not working the same, I decided to appeal. I have had RD for 34 years and life has been tough, as I had to work to pay for my mortgage, I don’t seek sympathy, just if a med works for you and you can get on with your life all the better. I am retired now, and with other health conditions at least I am able to deal with those too. Take care. X
Apologies Gigi71 - I’ve just found your message! Did you get back onto Embrel? I do hope so - 2 doses of Humira and I can already feel an ‘uplift’ in my condition.. and it wasn’t a fight to be changed back - my understanding is that so am just one of many in our area who have needed to revert to their original Biological!! X
That’s good news. Sorry if I confused you I am on Humira and still am. I see my rheumy beginning of September and if this comes up will still stand my ground. I am currently having to take Ferrous Sulphate due to low ferritin levels. Picked up by my GP. I hate the stuff, horrible stomach problems. My rheumy did phone me re my blood tests over the last 6 months and has ordered a US on my liver to check the cysts I have on there. I’m sure it’s fine. Very pleased to hear you are back on the ‘wonder’ drug. All the best.x
I don't know if you can see the posts but a few of us have had terrible reactions to new biosimilars and I and others have now been audited by our trust mid Essex pct and been told we have been mis diagnoised and no longer fit the criteria for bio logics . I have been left on naproxen and co codamol for the past 6 weeks my review next week . I am like you 3 years on Humeria full and active life now it's pants but I'm counting my blessings . You must fight . Wishing you luck 🌷
Oh! Gosh Nessa28...not an outcome you would have expected! Have they changed the criteria in your health district ...to ‘save’ money?? My thoughts are with you as you struggle to get the right treatment for you....to get back to where you were🤞🤞
I'm lucky I have found someone on here who is going through exactly the same thing with the same trust and the same consultant . She has been so supportive and I hope I have as well as we take on the pct . I'm sure this is happening all over . But for a few quid I'm sure it's not going to be that cost effective when you look at our health issues long term . Wish you well 🤗🌷
I was told I was going to switch from enbrel to a biosimilar. I wasn't happy about it and objected to switching and for the time being I can stay on enbrel. I do fear that sometime in the future I will be made to switch.
I've done my research into the biosimilars for enbrel and Benepali is just over £14 per injection cheaper and Erelzi is just over £17 per injection cheaper. Both of these drugs have only had small clinical trials and no one knows the long term side effects of these drugs. Enbrel first went into clinical trials in the 1990's and was approved to be prescribed here in 2002, there's years of data regarding side effects. Enbrel took me straight into remission in 2012, I've had no side effects and I don't need any pain relief at all. Enbrel gave me my life back....it gave Me back to Me! I just do think for such a small saving it's worth the risk of something going wrong.
I've read lots of posts from people who have switched and are having problems with side effects and the new drug just not working, sadly it's now looking the same for people switching from humira to a biosimilar drug.
Nras, if your reading this please help us. You are our voices in situations like this. It's obvious that these new bio drugs are not delivering the same effectiveness for some people already established on the orginal drug. Its peoples health and wellbeing that is being put at risk for such a small saving.
Thank you for replying Paula C.....in retrospect I wish I had not been so compliant but ....I must not look back but very smartly forward - and before I get any worse ....have started the ‘battle’ which I hope will be short and my ‘opponents’ humane and reasonable in their response. 🤞🤞
It is very difficult to resist the cost saving argument, given that it is claimed that a biosimilar will act the same, and therefore the money saved can help to pay for treatment for someone else. However, in practice it is clear that the biosimilar may not be effective, although what is far less clear is the percentage of patients for whom making the switch works without problems, compared to the percentage who have problems.
In my son's case, he switched from weekly injections of Enbrel to weekly injections of Erelzi, and after several months on Erelzi has switched back to Enbrel. I think that the Erelzi injections process gave him grief, although the effects of the medication may have been similar. He became reluctant to take his weekly injection, and really had to force himself to do it (rather in the same way as when he was enduring weekly Methotrexate injections). It seemed as if he missed weeks, and was gradually taking himself off medication, not because it was ineffective, but because he could not face the injections.
Our consultant was fairly helpful about it (albeit claiming that many patients were quite happy with change, or even preferred Erelzi.
Got to say - although it’s not a deal-breaker for me - Imraldi injections are very very uncomfortable compared to Humira. I can understand your son reluctant to comply if he has experienced the same change...
I have managed to stay on Humira. Made as a clinical decision ie shared decision with patient. I had a meeting with biological nurse in December and discussed the forthcoming switch to a biosimiliar . I am in remission with Humira. I was allergic to previous biological Enbral.Agreed with consultant wishes and mine to stay on Humira. I received a letter from Hospital pharmacy saying I was being switched to Imraldi. Rang my rheumy nurse and she advised me to ring the Pharmacy, which I did, but pharmacist was dismissive of the 3 times I quoted Shared patient decision. My rheumy nurse received an email from Pharmacy saying 'This patient does not understand that she has to switch'. Apparently Humira with 3 other biosimiliars are still being offered to my Rheumy Dept. From what I understand the decision should be made on a clinical/patient decision not through funding costs only. Though I do think it depends on individual Trusts and how much input your Rheumatologist has, I learned that as Enbrel was first put through with a switch Enbrel existing patients were not doing so well on the biosimiliar but patients new to biologics were doing well on the Benpeli biosimiliar, so in my dept cold have affected the decision on Humira switching.
I changed from Humira to Imraldi in January. By May my old condition was returning. Spoke with consultant and he switched me back to Humira. 3 months later and condition is under control again. Imraldi makers are flooding internet searches so difficult to find and negative comments but it appears it is nowhere as useful as Humira. If I was the NHS I might be asking for my money back.
Yes I have been changed to and have been suffering, i became super ill in august and was hospitalised, I had a urinary tract infection that lead on to a sever infection of epididymitus, ochritus and a cyst that was also infected. now every time i do my injection i develop a urinary tract infection so i am constantly on anti biotics! anyone else experienced similar?
We really do need to fight this as i was so healthy and well on humiyra.
I had been in remission for 4 years, my Humira was replaced by Imraldi & within 3 months I was suffering the worst flare up I'd had since being diagnosed. I have spoken with my Biologics nurse who has told me I need to carry on with the Imraldi "for now" I'm so upset. Surely there is a duty of care involved here, not sure how to proceed 😔
I was put on Imraldi to replace my Humira due to costs and it was the worst thing ever, I also had my Methotrexate dose halved due to a blip in my bloods by a Dr who didn’t know pie and had t studied my notes I became ill within 2 weeks of changing and went downhill eventually my OT wrote a strongly worded email to my rheumatologist last Summer and last October my prescription was changed back to Humira and my Methotrexate dose increased 8 weeks later my new script was delivered in the form of my injections I cannot tell you the difference it has made to me I feel like I wasted a minimum of 2 years of my life now however I am back on the right track, thank god for a brilliant OT and. Dr who heard my cry for help.
Imraldi is not the same as Humira it’s in the name Biosimilar and it is making people I’ll as it is nowhere near as good as the real thing.
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