Restarting an old biologic? UPDATE

[sjhewitt42]

Hi all

Thanks for all your replies, your support is overwhelming and in this time of darkness really help.

I saw my consultants understudy yesterday, which turned out to be a bit of a blessing. So, regarding restarting Cimzia, he said was a definite no as it had brought on drug induced Lupus and was effecting my organs (didn’t know this about the organs)

I have to stay on Toci and Azathioprine for another 2 months just to see if it does finally work. Oh the waiting, I never knew all those years ago when I had my diagnosis how patient and determined I would have to be to wait and see if these drugs work.

He also examined my neck, shoulders and spine and sent for an urgent MRI scan to see what’s going on.

Off he went out of the room, came back with the tray and asked me if I wanted a shot of Kenalog and promptly jabbed me in the bum! (With my consent 😀)

I just hope and pray it does something 🙏 as I can’t stay off work any longer and my 3 boys need their mom back.

Thanks for reading and supporting me through this.

Sarah xxx

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

[oldtimer]

Glad to hear that you had a listening doctor! It makes such a difference.

[sjhewitt42 in reply to oldtimer]

Thanks - it really does. My actual consultant is retiring next year so I’m hoping to get a better replacement as this doctor I saw is much more pro active xx

[sjhewitt42 in reply to oldtimer]

Hi - I did reply to you but it’s gone! My Rhumy retires next August and I’m ready for the change after being in his care for 16 years it’s time for someone to be proactive. The doc I saw yesterday was excellent. Sarah xx

[sylvi]

AT least the prick helped you!!!!!!!

[sjhewitt42 in reply to sylvi]

😂

[jojo_71]

Hi did the kenalog help? I've had juvenile RA. for over 30 Yrs, and they are like a miracle for me. I'm currently on rituximab with methotrexate, this is my 5th ish Yr on it, and it does work, but took ages to kick in.. Like probably over a Yr, to totally work, but I was helped by kenalogs until it did. Just wanted to say that sometimes, they do take a while. Good luck hun. Xx

[sjhewitt42 in reply to jojo_71]

Thank you. It hasn’t helped as yet but I know when I had it before it took a few days. It’s the only steroid that’s every helped. I know I have to give the Toci and Azathioprine time but it’s so frustrating isn’t it. Thanks for your support. Sarah xx

[Doughnut61]

Gentle hugs 💕 you will get there xx

[Biofreak]

Right love. Just read your post and must tell you that when I was put on tocilizumab I had exactly the same problems as you. My neck, shoulders, elbows and muscles everywhere ached. I had steroid shots which had no effect and oral prednisone which made things slightly better but was in agony most of the time. I was convinced it was the toci causing this but my inflammation level in my bloods looked fine. It took 4 months and repeated visits to rheumatology to convince the doc to stop the tocilizumab and try something else. When it was stopped and humira started all those muscle aches and neck and shoulder pain subsided. This is my experience but i know tocilizumab works for some people but not for me. Hope it works for you in time but if it doesnt improve keep pushing rheumatology to change it. Xx

[sjhewitt42 in reply to Biofreak]

Thank you that’s really interesting as the day after my first injection I felt like I had been beaten up! Was this your experience? I have had 2 infusions and it looks like I have to have 4 before they will consider changing, then my hospital drag their feet so I’m looking at 4 months away! I can’t go in like this for that long. Thanks for your reply. xx Sarah

[Biofreak]

Hi Sarah. Yes it was my experience. I was on weekly injections though not infusions but literally 2 days after my first injection it started. It felt like i had been beaten up which is a good description. It hurt to move. I couldnt lift my arms or bend them and i had to sit with 2 pillows behind my shoulders and i could hardly move my neck. It was like aging 25 years overnight!. Trying to convince the rheumy proved difficult because my blood tests looked like i was in remission. I started keeping a daily diary of my pain eg "couldnt get out of bed today, muscles aching all over, cant raise my arms because too painful etc etc". Eventually they couldnt dismiss it but i rang the advice line at rheumatology in tears twice. I did some research and i think it is something to do with the suppression of IL6 which the tocilizumab is working on to reduce inflammation but i read somewhere that il6 plays a role in muscle regeneration as well. Anyway my doc changed me to humira which is an anti tnf. This seems to suit me better. I really can relate to the way you're feeling and its horrible i know. Xx

[sjhewitt42 in reply to Biofreak]

Thanks for the reply, I felt like I was going mad as no one prepared me for the fact that it could actually make me feel a lot worse. The Rhumy dept won’t do anything until my mri now but like you my bloods look perfect! I can’t even get dressed or move even! I will keep pushing them and the helpline are not helpful at all. I’m bursting into tears every time anyone asks how I am! Thank you so much ♥️

[Biofreak]

You are most definitely NOT mad. No doctor will say you may get worse only that it may take some time for it to work. However, you know your own body and only you are the true judge of how you are feeling. You can"t function with that level of pain for too long. Most good rheumatologists will admit that blood results dont always tell the whole story about how someone should be feeling which is why i kept a daily record and showed it to him. He then accepted what i was saying and was prepared to stop it and try humira. In the meantime maybe you could ask your gp for some oral prednisone which may give you a little relief for a while if the kenalog hasn't made any difference. Worth a try perhaps?

Best wishes.

Linda xx

[sjhewitt42 in reply to Biofreak]

My Rhumy takes some convincing and he’s due to retire next year thankfully. I will definitely write a diary though, thank you for that idea. I just don’t think that I can cope for another 4 months of taking morphine and not functioning through pain. Thank you so much for your input and empathy it means an awful lot to me. Sarah xx

[Harrypotter2930]

Hi Sara I have struggled with all the different meds over the last 8 years tried cimzia and did nothing for me, I started Abatacept 2 years ago along with 15mls metoject and touch wood it's given me my life back. I now only have my bloods done 3 monthly see my biology nurse every 6 months and my consultant every 12 month. Hope your feeling better soon x

[sjhewitt42 in reply to Harrypotter2930]

Hi

Thanks for your reply, it’s nice to know that there can be some relief because when you’re in the thick of it sometimes you can’t see a way out. It’s frustrating when you know something has worked too. Fingers crossed the right one will come along. Sarah xx