Radio 4 programme today on biosimiliar drugs

[Ginpin31]

I heard this rather positive programme stating way forward was for nhs to switch biologic drugs to biosimiliar drugs to save millions. I am afraid to say my experience of drug switching is very dangerous. My husband was on enbrel five for 5 years. He was then switched to Benepali within weeks his behaviour changed. He then got anti nmdar encephalitis. He nearly died twice. I think giving people first line biosimiliar may be okay I think switching a person between the drugs is not okay. I would love to hear from anyone with a similar story. Thanks

[Paula-C]

I was told last November I was switching to Benepali, then told a few months ago it's now going to be a newer on called erelzi. I'm not happy about this at all. Been on enbrel since 2012, it took me straight into remission, no pain relief required at all. If I recall right Benepali is around £14 per injection cheaper and Erelzi around £17. I don't want them messing around with my drugs when I'm doing so well for such a small saving. The money saved is going to be a gained share between CCG and the hospital trust, it will not benefit people with RA.

I did read, I think it was on here that a consultant told someone that enbrel is now becoming cheaper due to the new biosimilar drugs that's now available.

I dread the mail coming everyday incase the letter arrives about the switch.

I'm so sorry to read what happened to your husband it must of been so frightening. What you put has made me more determined than ever....I had encephalitis when I was 6. Was in an isolation hospital in a coma for several days. I've found out since it was probably reactive encephalitis from having measles, my immune system went into overdrive.

[AgedCrone in reply to Paula-C]

Look at the NICE Regulations it says switching to Biosimilars should be discussed & not done against patient's wishes.

Good Luck, I hope you sort something out.

[Paula-C in reply to AgedCrone]

Thanks AgedCrone for replying.

I've got my notes all typed up for when DDay arrives. Ive quoted NICE guidelines in them. I've already shown then to my specialist nurse and she remarked that I've done a lot or research into biosimilar drugs. She did phone the day after my appointment telling me she'd spoken to a senior specialist nurse and they wouldn't make me take anything I didn't want to. I did ask if that meant that I wouldn't have to switch, but she replied I'd have to discuss this with my consultant. xx

[AgedCrone in reply to Paula-C]

Keep plodding away Paula......some rheumies will try to bully you into changing to a Biosimilar, I think to earn Brownie Points for saving money, but if you have been doing well on the Original Biologic after years of switching Dmards & ending up with costly treatments to sort the side effects, I think Nice understand "if it ain't broke don't try to fix it'

I completely agree new patients should start on a Biosimilar as their system will not have to adjust......thereby seems to be the problem....... adjusting from the original Bio.

But we do have to be pro-active as you have been......I am lucky in that after nearly 20 years of seeing a rheumy so often to sort out the mess I was in with side effects, he leaves me on RTX & I now rarely see him.I just liaise with my rheumy nurse, & any hiccup is dealt with quickly & doesn't incur expensive rheumy consults or extra drugs .

Try to explain to your Consultant that leaving you on Enbrel(?) will mean he can spend less time on you, , leaving him time to deal,with patients who are still in the Dmard wilderness.

Do hope you manage to sort everything out.

I'm sure you, like me, could well do without RD, but once you've got it, you have aim to get the best treatment possible.

Bon chance!

[Ginpin31 in reply to AgedCrone]

Wise words.......please quote my husband case to your Rhuematologist it happened in Norwich 2017/18!

[Paula-C in reply to Ginpin31]

I will, I may even show him this. x

[MissTia in reply to AgedCrone]

Likewise, I am with you all the way on this advise,, they have to consult with the patient.....

"If it ain't broke don't try to fix it.

[Ginpin31 in reply to Paula-C]

Agree with AgedCrone I think you have the right to say no they just do not tell you that. My husband was really not give much info at all. Good luck. I have yellow carded the drug and in talks with Biogen who make it. Interestingly a drug they make for m and s sufferers has been taken off the market for causing anti nmdar encephalitis.....time will show the truth here.

[Paula-C in reply to Ginpin31]

The drug was only approved to be used in europe June 2017. When I was told it was going to be Erelzi and not Benepali the nurse told me to research the drug on reputable sites, I tried, there's hardly any info at all on the internet about it.

I have been told by a Arthritis Research and a pharmacist at Health Care At Home that I can just refuse to go on it.

I belong to a RA Facebook group and I've just read a post on there from someone who's just been switched on to Erelzi and she posted that she's now feeling sick and yuk all the time. xx

[Paula-C in reply to Ginpin31]

These biosimilar drugs have had small clinical trials lasting less than one year, they do not know the long term side effects yet. I was given a choice of three anti tnfs and I decided on enbrel because it first went into clinical trials in 1993 and was approved by NICE in 2002. There was lots of data about the drug. I'm not going to be a guinea pig for them and be part of an unofficial clinical trial. xx

[AgedCrone in reply to Ginpin31]

I sometimes wonder if rheumies rely on Pharmaceutical sales patter, rather than reading serious research?

i know when I sit in the hospital waiting room & see patients in & out from their Rheumy doctor in a few minutes, I do question how can decisions on which drug to prescribe be made so fast?

[Lyneal]

So sorry to hear about your Husband, hope he is much improved now. Was he on Methotrexate before, just wondered.

[Ginpin31 in reply to Lyneal]

No he was not. Thanks

[helenlw7]

I was changed from Enbrel to Benepali after being on Enbrel successfully for over ten years. After three weeks I started going down hill and after visiting my gp on an unrelated matter, he emailed my rheumatologist when he saw the state I was in. He put me back on Enbrel within a week and fortunately I’m returning to my previous state.

[Ginpin31]

Hi Helen did it affect your mood at all? Thanks