Tocilizumab

[Vonnie10]

How do I know if my toclizumab isn't working any more. ? I've had a terrible flare up now going into it's 4 week my gp gave me a steriod injection 3 weeks ago it hasn't helped much... my worry is has toclizumab stopped working all together how do I know? How long do I wait before I know if its stopped working all together..feel so miserable with stiffness and pain it never let's up basic stuff is so tuff to do .. Clinic say they'll give me another steriod in 1 more weeks time which.i would rather not it gives me horrible side effect..feel like I'm living in hell right now toclizumab was working perfect until it wasn't. Sorry for the depressing post.

[Neonkittie17]

Sorry to hear this. 💗 Blood test should show your CRP and an increase there if that is usually indicative for your RA. I have had swollen red joints, hot to the touch and pain and stiffness when RA meds have failed. xx

[Vonnie10 in reply to Neonkittie17]

Ringing clinic tomorrow had bloods done 2. weeks ago its so miserable the pain worst flare I've experienced draining theife from me .

[Neonkittie17 in reply to Vonnie10]

I hope it calms down Vonnie, but you do need to see if Tociliz is holding it back and what your blood results were. Sorry you are feeling so rubbish. 💗

[Vonnie10 in reply to Neonkittie17]

What pain relief do you take kit ?

[Vonnie10 in reply to Vonnie10]

My crp is 4 just rang my gp im to scared to take ibuprofen clinic said I can't take no more with ckd took it for 1 week on clinic say so but no more than a week.it helped me but without it I'm struggling hoping gp can sort something for pain.

[Neonkittie17 in reply to Vonnie10]

CRP very normal then. 🤷‍♀️

[Vonnie10 in reply to Vonnie10]

Gp gave me nefopam she wanted me to have morphine I said no it'll be to strong so hoping this helps short term until I see rhem team.

[Neonkittie17 in reply to Vonnie10]

I had Nefopam post op twice for a short time of 5-6 days. Very effective as I don’t always respond well to many painkillers/analgesics.

[Neonkittie17 in reply to Neonkittie17]

When is rheumy team appointment? Hope soon. 🙏🏻💗

[Vonnie10 in reply to Neonkittie17]

Short term 1 weeks worth until I speak to clinic it may settle by then jm hoping 🙏

[Neonkittie17 in reply to Vonnie10]

I hope it’s been a really crazy flare (well wish it wasn’t even that!) but that your Tociliz is still going to work for you. 🙏🏻 Hold that thought until you speak to the rheumy. They won’t want to rush in and change anything until they are sure. Hope Nefopam can let you sleep. 🙏🏻💗

[Neonkittie17 in reply to Vonnie10]

Hi Von, only the 25 mcg/hr fentanyl pain relief patches for old osteo pain and nothing for RA pain and no anti inflamm tabs as it’s under control.🙏🏻 I hope the rheumy can decipher all this pain and stiffness etc. Are your joints red and tender/swollen? I feel sad you’re going through this and send gentle hugs. How is your little doggo doing? 💗

[Vonnie10 in reply to Neonkittie17]

Yes lots of inflammation I've took photos as evidence for rhematolgy gp made me take them he took them for me said its was acute flair up he said Hands are so stiff my middle finger won't straighten up my three inner fingers feel so tight .. it's in my wrist thumbs elbow both hands and my neck as joined in now it started off in just one hand big flare kit biggest it's been.. My pug is naughty still s baby though not 2 years if age yet needs castration but feel sly putting him.through it it can change the dog .so I've delayed it he is a funny little character who won't leave my side I love him keeps me going hopefully nefopam helps ibuprofen was doing me good but can't have it gp agreed with rhem team one week only rhem said go now said not to have it at all ever . kidney function was bad last years improved a bit need to be careful as you know. Hope your OK and staying in remission. X

[Neonkittie17 in reply to Vonnie10]

I am glad you took some photos as swelling often subsided by the time you see the rheumy! I hope Nefopam lets you have some relief as you sound like you really need it. Sounds a horrid flare. 😑 I remember your old doggy boy with his little supportive shoes. I hope the naughty pup makes you smile a lot! You rest the hands and other sore joints (sounds like too many are freaking out at the mo and the neck is so painful I know as mine went rigid many years ago but alright now.) I’m hoping soon you’re feeling much improved and your hands can be free of that pain and restriction. Have a relaxing weekend. I’m doing fine re new med (Abatercept injections) thank you and RA but my immune is still not right. Taking its time. Keep hoping for improvement. X

[helixhelix]

how long have you been on it, and do your blood tests show an increase in inflammation?

Bit as ever try to contact your rheumy team to signal your concerns.

[Vonnie10 in reply to helixhelix]

3 years I think not sure been good on it but this flare is hard and no let up for near 4 weeks had blood done 2 weeks ago going to ring clinic again tomorrow .

[helixhelix in reply to Vonnie10]

quite a few of these drugs do dtart to fail after 3 or 4 years as yiu develop antibodies to them. Especially if not also on MTX?

Time to push I think.

[Vonnie10 in reply to helixhelix]

Bloods are all well and good but someone can have normal bloods but the patient isn't right at times we need to look at the patent and not the numbers .I think this is the case for me right now waiting in a call from clinic should be Monday/ Tuesday. See what they say.

[Vonnie10 in reply to Vonnie10]

Crp is 4 hel.

[helixhelix in reply to Vonnie10]

My bloods are always pretty normal but luckily have a rheumy who looks at and listens to me. When Toc failed to work for me my ESR went up to 6! Any other doc would probably have ignored me. But she realised this was a sign.

So blood trends have their uses, but are absolutely not everything.

[Vonnie10 in reply to helixhelix]

It's was 4 I think its in range but at the top end tho. My clinic are good ill.be speaking to them early next week see what the plan is .

[Vonnie10 in reply to helixhelix]

I remember my daughter saying this years ago about antibody my daughter worked in clinic before she did her nurse training and she said about it failing and antibodies

[Seatgeorge]

Speak to the ra team at hospital usually very good, and also push your for the results on your blood test so you know what's going on, last time my gp was so slow, I told him if you had ra and the chronic pain you might get a move on to help me, 2 days later results and pushing for a consultant appointment.

[Dolindocurmi]

blood tests should show. If you have information I would go back to my rheumatologist straightaway. Don’t wait like I did I was in agony. I’m on prednisone 15mg for 10 days and I’m taking Baricitinib 4mg every day so far I’m okay he will assess in a month. Hope this helps nothing worse than being in so much pain and not knowing what to do. Take care.

[Vonnie10 in reply to Dolindocurmi]

I had s steriod injection 3 weeks ago it's di nothing .

[TerrilouiseS in reply to Vonnie10]

that could have reduced crp

[hellykay]

For me I'd had a few mini flares and then last October I also had a major flare that blew through a steroid injection. At that point when my DAS was higher than when I went onto anti TNF I was told it was time to change. Took 6 months to get it sorted mind which wasn't great. That was Enbrel but I'd assume it would be the same.I hope it eases for you soon.

[Vonnie10 in reply to hellykay]

Thanks ...it's horrible isn't it took me some years to get stable was doing so well back to the drawing board.

[Evie3]

😭

[TerrilouiseS]

what a scary time when you find “the one” and to even think of it no longer working! My heart hurts for you.

Also going through this with Humira. Signs are increased infections and as everyone else has said bloods (but not for all), then the obvious flares. QQ have you had covid recently or just before this started? Just asking as my Rheumy nurse said it’s been a noticeable pattern with patients. All might not be lost if you can figure out controlling the flares (not easy I know)

[Vonnie10 in reply to TerrilouiseS]

How long have you been in humira im sorry you going through this also .it's horrible isn't it when you may be faced with going back to square one and have to start all over again.I thought I wasn't well a week before but it was only one day of feeling a bit rough I tested myself twice both showed negative for covid I presume this was the very start of my flare I couldn't even brush my hair or open doors make a drink basic stuff was not easy in this recent flair up had weeks of it the steriod took the edge a tiny bit but not much still struggling day to day .. Im still hanging onto it's a flair up and it'll pass and tocilizumab will still work for me im. living in hope don't think its realistic of me ..it's a waiting game

Its just a massive inconvenience if it stopped working as you know take months and months for these drugs to work it's madness how you get used to the pain.

Spoke with gp yday she gave me nefopam she suggest morphine I don't fancy morphine it'll knock me sideways it's not helping much though but only had one dose last night maybe it needs to build up first. Anti inflammatory drugs work amazing for me but I can't have not allowed no more.

[TerrilouiseS]

I’ve been on it I think for SIX YEARS. No mtx either as trying to conceive. I am blown away by that length of time with it working tbf. I had a spell on a bio similar but had tonsillitis for three months so was swapped back.

Sorry to hear re brushing hair yes it does sound like the start of a flare. I wonder if changes to doses frequency etc can be discussed? Hope your rheumatologist appointments go well!

Just went to rheumy today for a steroid injection and bloods as I have had continuous infections since having covid in Jan. and am having a flare. they called tonight (7 hours after bloods were collected) to say my CRP is 85 and my iron is 1.8. Oh dear.

No idea what this means but I’m 99% sure this means the Humira is no longer working??

Been told to isolate and go nowhere until they’ve decided what to do with me.

Have everything crossed the review next week and I’ll give positive options but the safety blanket of Humira is going to be tough to say goodbye to.

How long have you been on Toc for?

Wishing you well

Terri

[Vonnie10 in reply to TerrilouiseS]

Terri your having it worst tham me it's gut wrenching isn't it...so sorry your going through all this . I hope you have some good news with trying for a baby soon must be so difficult for you and hubby you dont need all.this added stress..When will it end for us all.

I spoke with cns this morning from clinic told her whats gone on told her my gp gave me steriod on the 9th march which didn't do much to.help nurse says it should have helped my gp said its was acute flare from.my rd we both took photo as proof GPS idea good job he said do this.bhis words youll need. that as proof for clinic how right he was but clinic nurse (cns) who i spoke with today said because crp is normal it cannot be inflammation and the steriod should have sorted this inflammation out so doesnt think its my rhematoid .make no sense it's exactly the same feeling as a flare up and could be osteo i had a dexa scan last year all normal...I'm.baffled by it if I'm honest but they'll have me in for a scan ill.bet by that time it will have all settled down sod law .. It's defo my RD same situation with past flare ups i definetly think toclizumab as stopped working but try and tell her that Both hand both elbows I give up it's all a battle half of the time. Just the length of time everything takes does my head in .

[TerrilouiseS]

have you had scans on your hands? I had some a few years ago because they wanted me to take mtx alongside Humira because they were painful but I said I would once they could show inflammation in there. It was osteo so no mtx needed.

Crp is 90 today so must be some kind of infection but weird to have had steroid injection yesterday and have crp increase.

Honestly the cr** we put up with! I wanted to reply to you so you know you aren't alone, but I feel like you know that anyway.

Crp was normal in me for two years with red and swollen joints so I’m not sure I believe that crp bloods are the only way to identify a flare……

Hope you get somewhere, it doesn’t sound like your disease is well controlled at the moment at all

T xx

[Vonnie10]

Hi terri hope your day is good its a food job we have this page to put all.our woes on...sick of the crap just another number ringing gp tomorrow I woke up had a whinge knowing ill.be in pain all day long. morning are worst and night time I've had enough of it maybe i need morphine I rejected it last week.scare me strong pain relief will see.how I go ibuprofen is great stops it but can't have it not allowed .. yes i had scan at the start doctor said it was high severe inflammation .had scans few years later wasnt as bad this call yday from nurse in clinic really wound me up nurse alls she cared about was my bloods were normal and i had a steriod jab so its not my rd saying osteo it's the same pain and stiffness in both hand fingers stiff wrist and elbows my feet are at it now. same as when I was first diagnosed. But stronger pain so sick of it good job my family undertsnad..feel.like im constantly moaning.