Change of injections

pammi69

• HI , My RA specialist is asking me to change my medication from Enbrel Entercept to Adalimumab

I have been on Enbrel for 10-11 years now, but last 2 years I got Uveitis in one eye, had to have steriod in left elbow, now need one in right elbow, heel spurs , apart from all these problems I am ok. Now he has told me if we change and new one does not work we cannot go back to Enbrel DUE TO FUNDING, how does that build confidence for me to switch drugs. I hate taking enbrel and to now change to another is daunting. He did not reassure me that some of his other patients were ever in the same boat or even if this has happened to other patients. All he said don't worry if this does not work WE HAVE 10 OTHER DRUGS WE CAN TRY, I feel like a guine pig is he right and am i wrong? thanks

helpline_team

Hi pammi69,

Thank you for posting on the Helpline Forum. I am sorry to hear that you are living with RA and have developed Uveitis and increased elbow pain more recently. The thought of changing medication can be daunting after being on a drug that has worked well for so long. It sounds as if it may help to talk things through with your rheumatology specialist nurse who knows your individual clinical situation, has access to your medical records and can liaise with your consultant about your medication between clinic appointments. The rheumatology team usually follow strict guidelines about which medications to try when a change is needed. We are not medically trained. It may also help to talk things through with your GP and pharmacist.

If at any point you would like to talk things through informally and in confidence about your arthritis, you are welcome to call our Free Helpline on 0800 520 0520 weekdays 9am – 6pm. The National Rheumatoid Arthritis Society (NRAS) is a specialist association offering support for people living with RA. They also have a Helpline and website.  

I hope you find the information given below of some help. 

https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/

Best wishes,

Fiona, Helpline Advisor

pammi69

My nurse works part time, its my Rhematologist who is recommending I change, I am asking your opinion please as you are the experts in this feild. Have other people suffered with these kind of conditions and have been asked to change medications? My nurse is of no help, sorry but they answer a message every 3 to 4 days, the RA secretary does not work in office full time and my specialist everytime I want him is away or on annual leave, can you help advise pls

thanks pam

stickywicket

Hi

I'm just an ordinary forum member with no medical expertise other than that gleaned from 60+ years of RA, about 50 years of OA and about 10 years on these forums.

I think uveitis is another autoimmune problem which often co-exists with RA. Bone spurs are, I believe, more a feature of OA. I developed OA (as do others) because my RA was not treated aggressively enough early on.

If your rheumatologist wants to to change meds perhaps he or she thinks your disease is not under control.

I don't know what the rules are where you live but,it is quite possible that there's no going back to a med which has, essentially, failed to control your disease. Biologics are very expensive meds so, both financially and medically, it wouldn't make sense. But there are many others available though I don't personally know how many.

If by 'Have other people suffered etc' I guess the answer is yes, others with R.A. have had uveitis and OA but that's caused by the disease not by the meds or, at least, because the meds aren't, in your case, strong enough to dàmpen down sufficiently disease activity.

As I said, this is just my belief and I have no medical qualifications whatsoever. But you did seem very anxious to get an answer.

I hope you can sort something out to your satisfaction.

jamieA

https://community.versusarthritis.org/discussion/57286/change-of-injections

If your existing biologic isn't working it's probably logical to try a different drug. Is the comment about funding maybe due to moving you to a biosimilar rather than another biologic? I'm on an Adalimumab biosimilar (Amgevita) and I've read that it's about a third of the original Humira Adalimumab price - and it's working for me. After a couple of months of Amgevita I had a consultation with a rheumatology nurse who said it was good it appeared to be working as they had 7 other biologic/biosimilars to try if it didn't.

pammi69

stickywicket - thanks but I only got Uevitus once and it cleared up with steriods, I dont have OA but RA. From these small problems my head cannot understand why a change is needed after nearly 12 years?

JamieA playing dumb is biosimilar a copy or a man made version of a biological drug? this is why i think it is about money saving, "Through making biosimilar medicines more quickly available the NHS will by 2021 be able to take advantage of up to £300m of savings each year offered by these new products, enabling more patients to have access to other life-saving and life-enhancing treatments." thanks

stickywicket

Ah, now I think I understand. You're simply unhappy about being moved to a biosimilar in case it doesn't work. It ought to. The active ingredients are the same and, yes, it's about money. Biologics are some of the most expensive drugs available and also a huge growth area. They cost about £10,000 for each person annually. But the patent is now expiring on them so that the manufacturers don't have a monopoly and therefore the freedom to charge an arm and a leg. Other manufacturers can produce the same drugs at a much cheaper price as Jamie has explained. These are the biosimilars and I think most NHS trusts will have to move patients onto them if they are to treat everyone. Essentially, they're the same meds so shouldn't prove problematic. Have a read https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6158404/

jamieA

https://community.versusarthritis.org/discussion/comment/693953#Comment_693953

My understanding is that the biosimilar has the same Adalimumab in it but a slightly different recipe for the packaged drug than the Humira original. Here's an NHS pricing document from 2019.

https://www.england.nhs.uk/wp-content/uploads/2019/04/reference-prices-for-adalimumab-letter.pdf

At that time it was reckoned that in the UK Humira was costing £10k per patient per year - the biosimilar £3550. By moving to biosimilar Adalimumab the NHS saved £110M in 2019 alone. Humira's manufacturer had sales of $20 billion dollars a year for Humira alone before biosimilars ate into their profit.

I'd not normally cite The Daily Mail but here's an article on it.

https://www.dailymail.co.uk/health/article-9482071/Wonder-drug-set-help-millions-NHS-patients.html

And the US Food and Drug Administration has a really good article on biosimilars and biologics.

https://www.fda.gov/consumers/consumer-updates/biosimilar-and-interchangeable-biologics-more-treatment-choices

The rheumatologist I'm now under did tell me that there is a possibility that, over time, my existing biologic/biosimilar 'will lose effect' - I just accepted that it's like any other drug you are on long term - your body gets used to it and so it may have to be tweaked/changed.

pammi69

I in my heart feel it is more about money than me. My enbrel cost nhs £250 per injection so £12k per year. I just cant take the fact the way it was said "dont worry if it doesnt work there are 10 others we can try", I do not want to be a stage in my life being experimented on. The other thing is I reduced my enbrel from once a week to once every fornight and I even as specialist could that have had an effect and he said "no"

helpline_team

 

Hi @pammi69 and thank you for posting on the forum.

I have just read your thread of messages and hopefully you have found stickywicket and jamieA responses helpful. These together with Fiona’s messages leaves me little to add, aside from saying we are here for you.

As my colleague Fiona mentioned you are very welcome to give us a ring on our Helpline 0800 5200 520 (weekdays 9am-6pm)we are not medically trained, though sometimes it can be helpful to talk things through in a confidential and informal space.

If you would like to hear further experiences of others, please repost on the ‘living with arthritis’ forum.

https://community.versusarthritis.org/categories/living-with-arthritis-forum

Best wishes

Lynda

Helpline Team

 

pammi69

I cant call you, I am at work.. I work full time, this is why I am on threads..