entanercept to adalmumuab

[pammi2]

i have been asked to switch from above. been on ent for 10 years and now stopped working as inflammation levels have gone up, anyone else changed , does i work.

i am concerned it is only been changed due to costs?

[AgedCrone]

But you say Etanercept has stopped working….so changing seems the right thing to do doesn’t it?

Why would you want to be on it if it’s not keeping down your inflammation?

[pammi2 in reply to AgedCrone]

because i am afraid of the change and the new one not working and then having to try another one

[Amnesiac3637 in reply to pammi2]

It’s definitely scary changing meds but in your case there’s no real sense in staying on one that’s causing more problems than it’s solving. There’s not many of us who haven’t had to try something else when old and trusted drugs finally stop doing the biz.

The next one you try may be the Tesla to your old Nissan so look forward to better. All the new drugs now are even more targeted than before so they do less damage to your whole body and just home in on the bits that need zapping. Go ahead, don’t be worried and best of luck!

[AgedCrone in reply to pammi2]

But increasing inflammation is not good & in fact I doubt your rheumy will continue prescribing it if your blood tests indicate that it really isn’t working.

I was on some DMards for years that I thought were forever…but once they stopped working I was keen to find omething that did work. So deep breath & do change as your rheumy suggests.

[Oshgosh]

if your inflammation levels have risen,perhaps you need something else.

Unchecked inflammation can cause damage,so it must make sense to try another drug.

I know it’s a worrying time,but I think you need to try the different drug suggested.

I hop all goes well xxx

[pammi2 in reply to Oshgosh]

yes they used to be 5 then went to 21, 12 now 14

[medway-lady]

I got changed from Etanercept to Abatercept despite being twice the price it actually gave me excemea really badly. And the itch was awful plus it didn't work very well. As the Etanercept was stopped due to being blamed for something that proved to be wrong I was allowed back on it. I use it with AZA and seems back to normal. No issues at all. But apparently there was one hell of an argument over represcibing but I never said it didn't work, they said it didn't.

[MJSlide1958 in reply to medway-lady]

It worked out in the end, great! What is AZA?

[medway-lady in reply to MJSlide1958]

Azathyoprine. its worked now for years with no side effects just the RA got a bit more intense so the bio added in. It does hold back the RA. I loved Lefludamide that was great but sadly due to CKD it had to be stopped. It didn't cause the CKD though.

[MJSlide1958 in reply to medway-lady]

Thank you. Is Azathyoprine a DMARD or anti inflam? Does it go along side the biologic? I must be silly but what is CKD? Thanks

[medway-lady in reply to MJSlide1958]

A DMARD and it worked on its own for years before the biologics. Cronic Kidney Disease

[MJSlide1958 in reply to medway-lady]

Thank you for explaining, I understand exactly what you are saying now! My daughter would love to get off of Methotrexate, makes her feel sick and still has a certain amount of pain which she adds at times Paracetamol. To try another DMARD could be better? Good luck and many thanks again.

[medway-lady in reply to MJSlide1958]

I’d say ask about Lefludamide, if I could take it again I would walk over hot coals it worked so well. It doesn’t work for everyone but asking about it can’t hurt.

[MJSlide1958 in reply to medway-lady]

Thanks very much.

[blorie in reply to MJSlide1958]

I was Mtx for 2 years and felt poorly/sick every week. It wasn't until I had a serious infection and had to stop the Mtx that I realised it was the Mtx making everything worse. Changed to Benepali (bio similar of Etanercept) which has been totally different, still on it 5 years later. Always good to ask if you can try something else/newer.

[MJSlide1958 in reply to blorie]

thank you, agreed

[oldtimer2]

Etanercept targets TNF alpha beta. Abatacept targets T-cell costim, a slightly different part of the immune system, so it might be better for you?

If your medication isn't working then that's a lot of money wasted....and your health impacted.

[medway-lady in reply to oldtimer2]

I know why it was changed but sadly it was the only RA that really didn’t work and caused more problems. My arms, legs were covered in huge red rash then scabs. It really hurt but I have no regrets trying it. If we don’t try then we will never know.

[MJSlide1958]

my daughter was given Methotrexate to kick start Enbrel and it worked once you get on correct dose,she is on 15mg weekly tablets with Enbrel and if you keep it going every week then it works. Good luck

[pammi2 in reply to MJSlide1958]

i have been on both of those for 10 years

[MJSlide1958 in reply to pammi2]

Sorry perhaps a change to another biologic. Good luck

[Pitbull2017]

Have you actually seen proof levels have gone up because in my experience its usually a cost cutting exercise.

[pammi2 in reply to Pitbull2017]

i have alwasy thought it is about cost. he wanted me to change about 1.5 years ago but m CRP was 5, all good, but now it went to 21 , 12 now 14.

[Pitbull2017 in reply to pammi2]

I haven't got the medical knowledge to contradic that, but after many years I'm now in remission literally no pain and I fought tooth and nail to stay on entanercept, good luck.

[Green230461]

My meds stopped working and I was given humira instead. Worked for five years then same happened now on baricitinib!

[Evie3]

It is scarey changing but there are so many meds out there now…we are lucky. I am having to change mine too but have no choice….quality of life is key.

[medway-lady in reply to Evie3]

Here choice is being restricted to 3 not sure about anywhere else but it appears to be something to ask about.

[Evie3 in reply to medway-lady]

I have been lucky then. Had 4 so far starting 5th soon

[medway-lady in reply to Evie3]

You really are , around here it’s only 3 bio’s and if over 65 no JAKs so I’ve no idea what happens if someone needs more or if it’s a national guideline but it was the RA nurses at an NRAS in January meeting that explained it.

[Evie3 in reply to medway-lady]

I’m 72 🙄

[medway-lady in reply to Evie3]

I’m 35 twice!! And not written off for kidney surgery so why RA being regulated in drug limiting. It is a mystery. I understand about people who move on without really good reason but if the medication has given up on the patient it seems really dreadful. I wonder if it’s even legal to be honest?

[Evie3 in reply to medway-lady]

Its all about the money. I have probably had my monies worth 😓. I would b wheelchair bound if the biologics were removed 🤞

[pammi2 in reply to medway-lady]

been told there are 5 others feel like a guinee pig