Biologics for Ra

[Rap-17]

Has anyone tried more than 3 biologics?

I am currently trying out my third biologic and praying it will work. My rheumatologist just informed me that if it doesn't work they won't give me any more. There will be no more treatment!

I would be grateful for any information on this subject. Xx

[ruth_p]

I’m on my third one (tocilizumab) and it’s working great, I’m now three years into taking it. 🙂

[Rap-17 in reply to ruth_p]

Yes that is what I am taking at present but had to stop it because of an infection so didn't really get to see any positive results as yet. I had 20 injections prior to infection so fingers crossed that it works this time.

Thanks for your response.x

[helixhelix]

You do need to ask for more information about why that is. There are perhaps 20 different biologic drugs now in 6 different groups - these groups are ones that target:

anti-tnf

B cells

IL-6

T cells

IL-1

JAK inhibitors

Which three have you tried, and are they from different groups or all anti-TNFs?

It may be that are things in your medical history that make some of these groups unsuitable for you. It may be that there are restrictions from your local health trust about which ones they will buy. It might be that your rheumy is just a pillock. But as the patient you have a right to know!

[Nessa28 in reply to helixhelix]

When I was given Humeria I was advised that if I had no positive response after six months or it stops working . I will be offered no further treatment . As is the trusts position on the subject . Having to hit the funding criteria this is so stressful thankfully I responded well after taking it but I do worry about what will happen long term when my immune system becomes clever and manages to override it .🤗

[Rap-17 in reply to Nessa28]

Thank you Nessa28 for your reply. Obviously it could depend on funding which is another question! I do hope you continue to have success with humeria. I agree it adds stress to our existing problems, and makes it worse when it's to do with funding. I understand what you mean about immune system, I was on methotrexate for 16 years had been great for years and then every couple of years they added more until they put me on biologics. I actually went on the trial for golimumab in 2010. I was on it for a year and once a month had brilliant medical checks but had to wait for funding after the trial stopped. That was September and funding finally came through the following March. I was on it then up until 2015 when they stopped it because of liver function tests.

Maybe one day there will be a brilliant breakthrough. Xx

[Nessa28 in reply to Rap-17]

I was told that anti TNF drugs suppress the immune system but eventually your body becomes clever and can bypass the masking and symptoms can start to reappear be it ten years down the road . I hope this is the case and I and others have years of feeling better and more able to manage life and hopefully if it breaks down there will be another wonder drug . 🤗

[Deeb1764 in reply to Rap-17]

Based on my chat with my consultant this week, as I get a lot of chest infections we discussed taking a low dosage antibiotics all the time with my JAK Inhibitor. He felt it would mean it would assist me in staying on the Jak for longer and also make sure I was not roller coasting on and off the JAK when on the antibiotics.Might be worth discussing this too so you can give the biologic as much chance as possible.

[Rap-17 in reply to helixhelix]

Sorry I should have said that toxcillizumab is iL-6

[littleR in reply to helixhelix]

Thank you for posting this Helixhelix,

[Hidden]

Brilliant response from helixhelix, I'm just sorry to hear that you are in this horrible situation. Wishing you resolution and hoping your Rheumy isn't a pillock, just not come up with a solution yet and poor at communicating.

[Rap-17 in reply to Hidden]

I totally agree about brilliant response from helix helix. Because of other problems it gets messy but I did wonder if anyone else had been told the same.

I have had brilliant response from so many . Thank you all. The support on here is second to none. Will keep you all posted but as they are so slow here it may be a while😂

[Paula-C]

That's awful, surely they can't not treat you. Why not give the Nras helpline a ring and ask for their advice?

Free phone [phone]

[Rap-17 in reply to Paula-C]

Thank you for your help Paula I will. I had just told him that I wasn't happy with the treatment I had received over the past 3 years as I have had other problems....long story! Anyway I did wonder did he say that because of my complaint. I have been seeing them since 1999 but I said it was just the last three years I was unhappy about. I have never complained before hence my asking the question has anyone else been told the same.

Thanks again. Will keep you posted.

[hatshepsut]

I am about to start abatacept, my 5th biologic.....delayed because of a severe infection in my leg. The attitude of my rheumatology clinic is that there are still options.

I do hope that you can resolve this and continue with treatment. Last thing any of us needs is this sort of stress.

[Rap-17 in reply to hatshepsut]

Wow! Thank you for sharing that with me, it gives me something to fight for if needed. So sorry to hear you have obviously been through quite a lot to be on your 5th and I am happy for you that you have a good rheumatologist who obviously cares. Good luck with one.xx

[rawillbebeaten]

Hello Rap-17

Brilliantly set out by Helix - I hadn't seen the options set out in such a way before.

I have taken delivery of my 3rd biological Humira 40mg (Adalimumab)

At one point it seemed to be suggested that I had few options left. I did panic a bit, but kept asking about new drugs and trials. There is a lot of research being done.

The mood and attitude now seems to have changed.

I hope it does for you too, and you get support from your family and friends to present a united front to the Health Care Professionals

I've definitely had better results and been listened to more when I've occasionally taken someone with me to appointments

I think RA and it's related conditions is being recognised more, thank you NRAS and everyone.

My new practice has GP's who, hallelujah, really seem to understand and support

I kept pushing for appointments and making it clear that I was struggling and no where near as settled and happy as I was.

This can be lonely and exhausting but I'm now more hopeful for the future

I am waiting for a nurse visit to go through the injection process.

In reality I was on Enbrel (etanercept) for about 14 years but had to come off it because of concerns about kidney function. So I am used to injecting, albeit not for 3 years

So, after much pushing I am back on an anti TNF, which did work for 14 years

I worry that may be it won't this time - I took Cyclosporine with Enbrel before which also damps down the immune system

Arava was a nightmare for me and I went on a big downward spiral

Rituximab from 2016 did give a good amount of improvement but the deterioration in my joints since coming off Enbrel has now made Rheumatology act (finally).

This condition can be such a roller coaster, I hope you get to a settled point and it stays that way.

Michele

[Rap-17 in reply to rawillbebeaten]

Hi Michelle you certainly have had your share of this jack-in-the-box of a disease. It's true; just when we think it's under control up it pops again and again.

We do need support from family and friends and thankfully my husband and children (adults now,) have been very supportive sadly it's hard to explain to some people so I have given up trying to explain how it works.

I do hope your kidneys are ok and you have no repercussions from it.

I think that is what has happened to me joint -wise as I have just come home from seeing hand specialist and arthritis so bad in hands a replacement wrist could go wrong so he has put me on his list to fuse the wrist on left hand first as I am right handed. He said I still won't be able to use it but I won't have any pain. He will do the right later on.

This site has helped me by realising I am not alone. There is an abundance of support and there is always someone worse who I should support thereby helping myself in the process.

Good luck to everyone on here and gentle hugs to all who need one.

Dee xx

[Daisy70 in reply to rawillbebeaten]

Hi Michelle. I see that this post was 4 years ago but I wondered, how did the Adulimum work for you? Did you have any side effects?

I’m about to start Adulimumab as my first ever biologic and very nervous.

[rawillbebeaten]

Hi Dee,

I hope all goes well with the wrist fusion - being pain free is what we all aim for. Sounds scary but these operations seem to be fairly common and a tried and tested procedure.

My hands don't really hurt but all the fingers are gradually bending more and joints thickening so I'm sure I will need things done in the future. Cross that bridge when I come to it

Unless they find a miracle cure that reverses damage, like something you'd see on Star Treck!

Yes, it's great to feel we are part of a big group who offer support and information

Wishing you all the very best

Michele xx

[Rap-17 in reply to rawillbebeaten]

Thanks Michele.

It hit me more this morning and I will have to adjust my mindset before it's done to find ways of dealing with it. I have always kept busy with my hands taking my mind off aches and pains. Realise I am very fast losing that ability. He has to do the other wrist also but obviously not at same time.

I used to bake and ice cakes, dressmaking, crochet, knitting and gardening. But I will now have to turn my mind to another form of therapy. I refuse to give up and vegetate yet.

A new wonder drug sounds heaven sent. Must remain positive. If not I am booking myself into a vets😂😂

Will keep you posted on progress. Xx

[rawillbebeaten]

Yes, Adjusting is one of the key factors in coping with this changing, frustrating, condition. I'm generally an upbeat and positive person but the last few years have really tested that.

Yes, please keep me posted and I hope you find activities that you can do or gadgets to help you continue doing what you enjoy

Michele xx

[Rap-17 in reply to rawillbebeaten]

Thanks. Xx