Toclizamab : Hi anyone else had issue with toc not... - NRAS

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Toclizamab

Vonnie10 profile image
10 Replies

Hi anyone else had issue with toc not lasting the whole seven days? I take mine on wednesday by the sunday / monday im in pain & stiffness its looks like a reoccurring pattern to me, clinic told me recently i have osteo arthritis also, i dont know if its my rhematoid or osteo ? Last time i had a bad flare up clinic gave me a steriod injection but didnt help at all, so clinics thinking its osteo causing problems & not the rhematoid Its draining the life out of me, its my both hands especailly thumbs and elbow which are very difficult dont want to go straight. I would like to have my ducks in a row before i ring clinic.

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Vonnie10 profile image
Vonnie10
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10 Replies
MuppetBaby profile image
MuppetBaby

Not with Tocilizumab but with Abatacept. Definitely a pattern of wearing off about 2 days before due for the next injection. If you see a pattern I would definitely speak to your department, I take another medication (not for RA) that only lasts around 5 days too. I’m now on daily meds and for me that seems to be better 😊

Pat9442 profile image
Pat9442 in reply toMuppetBaby

I have tick by infusion every four weeks. But I notice it does wear off and I struggle about 4-5 days before the next infusion is due

rmros profile image
rmros

I take sekuninumab which is injected monthly and I definitely feel it wearing off before the next one is due. I barely bother to keep track of injection date anymore - my back tells me. Unfortunately the gap is getting wider.

Joodee profile image
Joodee

I had the same experience with Humira after I had been on it for about 10 years, the consultant said this sometimes happens after a long time on one biologic. He swapped me to baricitinib which is working really well. I would definitely mention it to your rheumatologist.

ruth_p profile image
ruth_p

My Toc doesn’t wear off at all, even if I miss one due to antibiotics or an operation . To me it sounds like it’s not working well enough. You should definitely push the rheumatology clinic to check it rather than just put it down to osteoarthritis. X

aliplayspiano profile image
aliplayspiano

I am on toc but only inject once a fortnight due to low neutrophils. I don’t notice it wearing off before the next injection is due.

wilbertjellyfish profile image
wilbertjellyfish

I’m wondering the same. I take mine on a Wednesday, I’m currently sitting trying to motivate myself to move but I’m so stiff it’s painful to do anything.

I’m only on it two months so it may not be working at all but I do find Monday and Tuesday are a struggle.

SheilaT3271 profile image
SheilaT3271

I’ve been on fortnightly Toc injections for around 6 months and it’s been very effective. Just recently experienced slight pain in joint between left thumb and wrist but in conversation with RA nurse this morning she thinks that’s osteo as it’s quite a common joint to get osteo in. Not sure if that helps with your query.

Vonnie10 profile image
Vonnie10 in reply toSheilaT3271

My thumbs and elbows are hell right now making me so misrable got a appointment with gp next week maybe coxib athritis drug isnt working no more and maybe its osteo causing me problems.

Whezziewhoozie profile image
Whezziewhoozie

yes I am on it and about two days before I inject I notice that I work out when my injection is next due. Like count down how many days as I notice I am starting to get sore. However this is by mu 3rd biologic and the one that had worked the best so I am sticking with it, I just plan my life that I will be not as good when it’s due to the days that I have had it.

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