I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it?
Am also on 14mg pred, and 20mg MTX.
Thanks!
That is quite a cocktail Sharitone. I wonder if Methotrexate is adding any value? I would discuss that. I think I felt a bit weird at first with my Tocilizumab jab. How much of that was psychological, I don’t know. I don’t really notice an injection day these days, it’s been a year or so. No dramatic side effects and no dramatic improvement. More subtle than Pred and much harder to read. I was able to reduce Pred from 40 mgs to 10 mgs, following a fast taper from my Rheumatologist- no flares, didn’t have to tolerate any withdrawal at all. Things slowed at 10 mgs of Pred. It has taken ages to reach 8 mgs - 7 mgs was a step too far. It has certainly reduced my steroid burden. The rest is a hope and a prayer. Lots of eye and nasal symptoms - minor. On balance, it is probably a good thing. Still fatigued and reluctant to get on with things. Having a gap for antibiotics for a UTI, hardly notice the lack - getting a bit stiff and hobbly maybe. Sorry not to be clear cut in my opinion. Maybe keep a symptom diary. Good luck! My Rheumatologist is very keen on it and I have hypertension and high glucose from Pred use now, so I press on.
Thanks. I was told the pred would be tapered off before the MTX, which surprised me, because I'm not aware that the MTX ever helped. Presumably because it has fewer side effects and may be doing something after all? In the meantime, I'm feeling well and truly poisoned! Started on flucanazole yesterday as well. I'll finally make the effort to do a symptom diary.🙂
Hi Sharitone. Nothing dramatic happened to me when I started Tox in February. I agree with Sheffield Jane it’s effect seems subtle however I had been stuck on 20mg of Pred and am now on 3.5mg so it has enabled me to reduce my steriods which was the aim. I too am on methotrexate 20mg weekly. I think we have to remind ourselves now and again that there is usually no quick fix for these conditions. Best of luck to you.
PS. If bad effects continue I’d mention them to my rheumatologist.
Thanks. Your reduction is encouraging! I think I'll have to contact the rheumy nurse anyway, because no-one has told me whether and when I can start reducing pred.
Good luck
Oh no, I’m just waiting for the nurse to come and give me my first injection of Actemra so will let you know what happens later. Hopefully I will be ok. I’m on 13mg of Pred and was advised not to taper before starting the injections. Not on Methetrexate. Hope you feel better today. I will also ask Nurse if your reaction is normal & let you know.
Oh thank you! I hope it 'agrees' with you!
Sorry my nurse didn’t turn up today but I will still let you know how I get on once I’ve had my first jab, whenever that is!
Sorry about that - how disappointing! I'm glad to tell you I am feeling somewhat better today and so am optimistic about the effect of future doses. I hope I didn't worry you too much.
Thanks, that's encouraging and very interesting, the article too. I think I am lucky to be given the chance of trying it!
Hi Sharitone, I've been on TCZ for around a year now and the only side-effect I've experienced is neutropenia, which is, of course, only detected by blood test, so no discomfort whatsoever. Because of the neutropenia, I have my jabs 3 weekly and it continued to enable me to reduce the pred down to 0.5mg, at which point I flared. After that was under control, I got back down to 2mgs where I intend to stay, all going well. I am just in the process of stretching my jabs further apart as I will not be able to get any more once the 12 jabs I have left are used. I really want to avoid methotrexate after advice on this site, so hoping the 2mgs will sustain me once off TCZ. Good luck on your journey, we're all in this together. xx
Thanks. 2mg sounds good. I hope it works for you!
Dear Sharitone. I have been taking Actemra since February without any side effects. I could taper prednisolone from 40 mg to zero within 5 months and I do not have any disease symptoms (before therapy I had mainly generalized symptoms such as fever and fatigue). I feel fully recovered ( I am working full time and exercising (almost) every day.). So for me TCZ works extremely well. I wish you all the best.
Excellent! Thank you!
I had my regular Rheumy appointment last week and we decided that I go to injections every 10 days by January and then to bi-weekly injections by March and then stay there for some time. If that works the idea ist to extend the time period further and to stop next autumn. My rheumatologist determined calprotectin in serum, which is an experimental marker for autoinflammation activity. This marker is not affected by the interleukine-6 receptor blockage conveyed by TCZ. As the levels where within the normal range (they were clearly increased before therapy) my rheumy assumes that there are good changes for remission also after stopping TCZ. Actemra is in Germany still available, though sometimes delivery takes a few days. I have now a two months reserve, which helps to cope with unreliable delivery. Humira is not assumed to affect PMR, right? So when did you stop TCZ? And are your symptoms completely gone?
Does that suggest the TCZ was implicated in the uveitis?
Thanks. Who would have thought a horrible disease would bring such a good education!😀
Trouble is - I can't remember most of the things I'm advised to do!😂👵🏻
If you can understand it in the first place, then you're not doing so badly!😀
Vasculitis/Tocilizumab
Tocilizumab
