Tocilizumab and fuzzy head………

[Amnesiac3637]

Hi All.

Been on Toc injections for a month now having switched from Baricitinib which stopped working after three years ( usual time frame for everything to give up on me) but not sure I like this new drug very much. My head which has had fog in it for some time and particularly after having Covid in Feb is worse than ever. When I came off Baricitinib for two weeks prior to Tocilizumab my head cleared like magic and I was normally functioning again and able to think clearly. A month on Toc and I’m worse than ever particularly after the injection which I do at night.

Not only is my head foggy, I feel exhausted, my balance is slightly off, my skin has peeled from my fingers, I’ve had a rash on my leg and so far it’s doing zilch for the RA!

I know people will say ring rheumatology but I need to give this drug a chance to work. I’ve had everything ever invented (had RA for over 33 years) and I really want to know if anyone else who has recently started on Toc or been on it some time feels about it and how you felt when you first started it. As far as the side effects go it’s prob par for the course but Baricitinib worked immediately, not a side effect at all in all the time I took it and I’d quite like to still be on it……..hey ho.

Value your input and hope this is an early day start off and it’ll get better. It’s the fog in the head I hate most! Huge thanks.

[Moomin8]

Hi 🙂 I've been on Tocilizumab, weekly injections, since 1st December 2021, so 8 months. It's been great for me to be honest. I had to take antihistamine for the first few times to counteract any rashes, weird feelings etc, but it soon settled down. I hope this works out for you too, but definitely keep your clinical nurse informed.

[Amnesiac3637 in reply to Moomin8]

Thanks for replying. I’ll give it a couple of months and hope weird feelings subside - the foggy head is a b………r - but it may be just inflammation still which hasn’t settled yet. So glad it’s worked for you.

[Biofreak]

If you type tocilizumab into the search field you will get some information about people's experiences with this drug. I persevered with tocilizumab I think for about 16 weeks . I developed muscle aches everywhere and it didn't improve my rheumatoid arthritis so my rheumatologist stopped it. After about 2/3 weeks the muscle aches stopped. I also had a fuzzy head but don't know if that was the tocilizumab or the pain I was in.

[Amnesiac3637 in reply to Biofreak]

Thanks. I shall persevere for a bit longer but if the foggy head persists that’ll be it and I shall just stick to steroids. These chemicals we ingest are so powerful I do wonder what they’re doing very long term.

[helixhelix]

I had my first dose on Saturday, so can’t really say anything yet!

I really hope it does as have just wasted 3 months taking Amgevita which did diddly squat, so don’t want to wait another 3 months with no effective treatment.

[Amnesiac3637 in reply to helixhelix]

Good luck, perhaps we can compare notes down the line.

[Mmrr]

I did not do well on tocilizumab, I lasted around 6 weeks before I stopped injecting it despite being advised to continue by rheumatology.I had some of the symptoms you describe, dizziness, brain fog, unrelenting fatigue, a completely black tongue accompanied by a sore bleeding mouth with ulcers and it did nothing for my RA.

I was offred toficinitib, which was much more suitable for me.

[Amnesiac3637 in reply to Mmrr]

Oh wow, you went through the wringer! I hope never to have the black tongue etc and can relate to the other stuff in my head and will give this another month’s worth of injections. If my foggy brain continues I’m coming off it. It’s so vile feeling lightheaded, disoriented and out of focus!

[aliplayspiano]

I’ve been on toc for four years. It is the first biologic I have had and has worked very well. It may be starting to be a bit less effective now but I’m hoping that is temporary. It does have the effect of sending my neutrophils/ white cell count too low so I only inject once a fortnight and have monthly blood tests to monitor it. It did take several weeks before I started to see it working.

[Amnesiac3637 in reply to aliplayspiano]

Thanks. Glad it’s worked for you. I look forward to it working for me too.

[Silverpixie]

Only thing that's worked for me but took 4 months to work

[Amnesiac3637 in reply to Silverpixie]

Glad for you - hopeful for me……….

[Leics]

I had a similar experience with Baricitanib which stopped working for me after I kept getting infections. I was then put on tofacitanib which I took for a month and it was hell the pain I had in my joints got worse every day I took it. I’m now going to try mtx injections (when the prescription is finally sorted out 🤦‍♀️). I have to be honest I wouldn’t keep going with a med that I had awful side effects like you are experiencing without having a good chat with rheumatology especially if it’s doing nothing for your RA. Just me I suppose but I’ve had a few meds which have caused similar issues and persevered for far too long with them and then been told off for not informing rheumy. You’re damned if you do and damned if you don’t sometimes. Whatever you decide if that’s leaving it longer to see what happens or deciding you know what it’s just not working and the ‘cure is worse than the disease’ I think a conversation with rheumy would be a good idea. Just as a second thought I’m going back on mtx at a much lower dose as my liver said no last time because it’s the only thing that worked for me so maybe if baricitanib was good for you you could try it again at some point in the future ?

[Amnesiac3637 in reply to Leics]

Thanks so much for replying and I’m pretty sure you’re right about not staying on a drug that makes me feel so rough. Today I can hardly drag myself about - never had this before - so shall get in touch with the team, who are great, and see what they say. Good luck with MTX.

[Leics in reply to Amnesiac3637]

Thanks just been informed that it’s ready to collect although the other side of the city so will be 1 1/2 hours door to door but I don’t care been waiting too long. Just a thought have you done a lateral flow coz maybe it’s covid again ? I hope your team manage to sort a plan out for you even if it means an injection once every 3 weeks instead of two or pausing for a while. I’m sure as they know you best they will have some good advice if nothing else. Good luck keep us updated how you’re doing.

[Amnesiac3637 in reply to Leics]

So kind. Will do, you too.

[Florida100]

Hi, I’m sorry to hear about how rotten you feel but I must say that Tocilizumab is working great for me so far. I have been on it for about one year now after 4 other biologics stopped working. It has definitely lowered my neutrophils which can be one of the side effects, but otherwise it’s given me back my mobility etc. Trust things improve for you very soon!

[Amnesiac3637 in reply to Florida100]

Thank you so much. Glad it’s been a success for you and mitts crossed it might do the same for me.