Restarting an old biologic?

[sjhewitt42]

Hi

Well it’s a new week and I have to try a stay positive for my own sake and that of my family.

I am now entering into week 5 of being off work with the most horrendous flare up in my neck and shoulders and am taking a combination of slow release and oral morphine which is spacing me out to say the least.

My question is this - despite Cimzia causing infections and skin problems and also brought on drug induced Lupus it worked! It bloody worked! I was able to lead a ‘normal’ life ish! Still had a few aches and pains but I could manage it. I’m in bed or laying on the sofa and as I have my appointment with my consultant tomorrow I’m wondering whether to ask him to restart it! I’ve tried 3 other biologics since Cimzia and they just don’t work! I have 3 children, a full time job and a house to run so I can’t afford to be like this!

Just wondered whether anyone has restarted a biologic or whether it’s a big no, no.

All answers will be greatly received as I’m at my wits end now. 😢 Sarah xxx

[popsmith1874]

I haven't restarted one but I'm on Humira and it's certainly helped me get on with my life, had a few chest infections and have an ear infection at the moment but it's a small price to pay if it can get us mobile again

[sjhewitt42 in reply to popsmith1874]

Thanks for your reply. I know how well I can feel as I was on Cimzia for 5 years but the mobility is as you say a small price to get infections. I’m not sure where I stand with funding. I’m glad Humira is helping.. all we ask for is to be able to live life. xxx

[Stormpetrel]

Dear Sjhewitt42

I apologize I am not confident to reply confidently to your question about restarting this drug again. But I do know this is the point when you really need advice from a very experienced Rheumatologist who understands the relationships of these biologics. If certain people don’t respond to individual drugs there is often a clear alternative as others work in different ways. There are also these new JAK inhibitors on the scene now as well. Not sure how good your Rheumatology team are ? but maybe if you are in a position to get a private appointment to discuss your best options?

I know it’s so scary not being able to rely on your own body to just get on with ‘normal’ life. I have been similar with 2 x young children job and home to run. It really is pants! Hang in there. My kids called me director of operations!

Really hope you can get some home support and an understanding employer until your drugs are sorted out

Good luck

[sjhewitt42 in reply to Stormpetrel]

Thank you so much for your reply, it’s nice to know that someone understands especially with the children. My rheumatologist is actually retiring next year and he is a very difficult man to persuade to be proactive, he tends to drag his heels and I often think it’s because he is also a director of finances for the hospital and I had to really fight to get in biologics in the first place. I will hope I can show him my predicament tomorrow xxSarah

[oldtimer]

Have you looked at the treatment pages on the NRAS website? It could give you extra information for when you discuss this with your medical team about which biologic treatment would be most likely to work for you given your trials of them so far.

[sjhewitt42 in reply to oldtimer]

Thanks I didn’t think of doing that so will have a read this evening. xx Sarah

[wishbone]

If, like me, you tend to have problems with infections then it might be worth mentioning baricitinib to your rheumy. Apparently, it leaves the body pretty sharplsh if you need to stop taking it, within a couple of days I was told, which can't be a bad thing if someone does get an infection.

[sjhewitt42 in reply to wishbone]

Thanks I will mention it to him tomorrow. It’s just really frustrating when something worked for 5 years and nothing had even come close to it. Sarah xx

[helixhelix]

Cimzia is an anti-tnf. Were the other biologics you tried also anti-tnfs or something else? As that might give you a clue about what your body likes & doesn't like. And did you take it with MTX or without?

Generally starting one again can be a bit of an unknown, as you might have built up antibodies to it. You could ask whether there's a way of testing for this?

And then yes, as others have said, talk to theum about JAK inhibitors like Baractinib. The new kid on the block, but seems to work great for lots of people.

If your rheum is a bit of a foot dragger then super glue yourself to the chair and stay put until he's agreed to do somethimg!

[sjhewitt42 in reply to helixhelix]

Hi HH

Yeah I had Enbrel next which is anti tnf then Abatercept which works on T cells and now currently on Tocilzumab which targets IL-6! It makes sense that the anti tnf was working but the Enbrel did absolutely nothing. I can’t tolerate MTX as it basically makes me unable to function, same with Sulph and Lef do I’m on Azathioprine at the moment. Phew when you write it all down it makes you realise how hard this disease is to treat!! I think the pathway is Rituximab has to fail before they will give me the JAK inhibitors so this may be the next step. My consultant tends to leave you on the same for 6-9 months and by the time the hospital have sorted themselves out it’s another couple of months so I’m expecting him to have a do nothing approach but it’s no good to me as I can’t even hug my children without wincing in pain! Thanks for your input, very much appreciated. Sarah xx

[Dingaan]

I started on Enbrel which worked very well for me. I was then switched to a biosimilar Benepali. That was a few years ago and looking back am convinced that's when things started to go downhill for me. I was then put onto Rituximab which didn't work. I am currently on Orencia (Abatacept) 6 months and this too isn't working. I did ask my Rheumatologist if we could try Enbrel again and he went away to ask the necessary people if this could be done but was refused. Apparently you can't do this through the NHS. I am going to be put on Golimumab next so hope this works. If push comes to shove I might go private and pay for a few months of Enbrel to see if this does work again.

[sjhewitt42 in reply to Dingaan]

Thanks for your reply it’s really informative. I wondered whether this would be possible due to funding. I have only currently been on Tocilzumab for just under 2 months and I’m sure that my rheumatologist will tell me to wait longer. I flared really bad the day after the first infusion and it hasnt gone down since. You must be as frustrated as I am knowing that something can work and make you feel better but it’s not accessible. I will let you know how it goes today. Thanks again for your reply. Sarah xx

[rawillbebeaten]

Dear Sarah,

Enbrel worked for me for 14 years but started to effect my kidney's, so I've been on a 4 year roller coaster of alternative treatments. I won't bore you with all the details - After really getting my thoughts together and making my situation very clear am now on another anti TNT (Humira)

It has had just the effect I hoped for. My ESR is 5 and CRP 7 and I can feel it in my body and emotions as well. A victory that has been hard won.

It may not be the solution for ever - we all know how this condition changes and can jump up and bite you.

But the Rheumatology team finally listened and understood how bad things were.

Keep fighting but be clear calm and informed

I wish you so much luck and a future where you can get back to living life

Michele x