I saw my specialist (in France) 2 days ago for the first time face to face this year. The last consultation was by telephone in January. She diagnosed me with GCA in April 2020. In January 2021 she agreed that I could come off prednisone and continue with weekly injections of tocilizumab (started late August 2020). She said after 2-3 months I could increase the gap to 10-11 days. I took the liberty, in the last 2 months of increasing to every 14 days. She was not happy that I had done that without permission but eventually agreed that it could continue.
I was hoping to persuade her to let me increase the gap further to every 3 weeks then every month but she was not having any of it! She said the dose would be ineffective with a longer gap. She said if I take it every month I would be "up and down like that" , waving her hand in the air. The reason I was asking to do this was to minimise the length of time I had to suffer the side effects. At present, for up to 5 days after the injection I have puffed, red, dry and itchy eyes and I feel like I have a cold. I believe that my increase in blood pressure during these days is caused by the drug too. Sometimes I feel dizzy during these days. I asked the doctor how much longer I would have to continue on fortnightly injections and she said for at least 2 years from the start of them. There is no plan to increase the gap only the length of time to be on them.
In her medical opinion, she said the risks of relapse far outweighed the side effects that I was complaining about. She reminded me of the seriousness of the condition and that I could have a stroke, heart attack or go blind in at least one eye. She said, in true French style, "you can do what you want but this is what I am telling you"!
Based on what others have reported on here, I believe many of you will be telling me that she is right. I have to trust her advice and that of my fellow sufferers.
As for christine2715 it may well be the case that the monthly injections are not having much effect and that you do need to have them more often.
Thanks everyone for listening.
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Frenchduck
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I think I've seen the half-life of tocilizumab said to be 10 days or possibly 18 days. Therefore taking the injections at longer intervals than 10 days to 2 weeks would mean you would not be getting an adequate dose to control any inflammation. I think your specialist is right to say no to 3-weekly or monthly injections, especially as you have no back-up from prednisone.
PMRpro quotes the clinical trials where patients took the drug weekly or every 2 weeks, but not at longer intervals.
Stick with it, although I appreciate the side-effects are troublesome. You are almost half way through the 2 years that she wants you to take Tocilizumab. In a year's time, I hope you can look back and know that she was right!
(PMR since May 2016; GCA-LVV since Nov 2019; TCZ started March 2020 with pred, current dose 5mg tapering to 4.5mg)
There had been talk of MTX when my year's allocation was due to end in March this year, but we now have a reprieve until March next year, so it would be good to imagine I may not need an alternative, but who knows?
I am in the same boat Rugger, extended until March ‘22 and hoping that I can be done with drugs. Incidentally, Sarah ( our Rheumatologist) did mention tapering with fortnightly gaps towards the end.
Thanks a lot for your supportive reply. At first I felt disappointed but now I realise that I just have to stick with it as you say and try to forget about it if I can. I read the trial a while ago but I'm going to read it again. I remember it had a lot of positives. I hope your treatment goes well and you can continue tapering.
I am on Tocilizumab for GCA/LVV and have been for around 10 months and tapering from 9 mgs of Pred. I share the swollen eyelids and itchy prickly eyes, blocked nose and cold symptoms as well as breathlessness and sometimes flu like symptoms. Extreme fatigue remains my most troubling symptom. My Rheumatologist believes that some of these symptoms are due to long term steroid use and the disease itself. I share your desire to be off the medication but remain afraid of the potential consequences of untreated GCA.
Yes, that's our problem, the fear of what will happen if it's untreated. That's why it makes it difficult just to forget about it and get on with life. How do we ever know when it's gone away! Luckily I don't have extreme fatigue just tiredness sometimes due to poor sleep.
I don't know if this is possible for you, but I'm wondering as you have such long after effects, if you could have the monthly infusion of Tocilizumab rather than self injecting. You may not get as many side effects. I am 6 months in and think I may be lucky in that I don't have too many side effects. I have frequent eye infections but I had those just on pred too, so am unsure which drug may cause that. I am also trying to taper from 12,5 which I was doing OK on, but struggle as soon as I get to 10 or below, so am staying at 11 at the moment and will try again in a couple of weeks. I can see why you would want to try and stretch the days out if you have 5 days of it. Sounds tough for you. As if our condition isn't all consuming enough.
Thank you very much for your reply and support. I will certainly look into the pros and cons of a monthly infusion. I assume this is something you have to go and have done somewhere? I suppose the bonus for me at the moment is that I am not on prednisone so I don't have to contend with that. Any relapses and I would have to go back on it in the first instance.
Yes, you would have to go somewhere like a hospital or clinic that would do them, which might rule it out for you. I was hoping to try it to see my daughter in Hong Kong, but HK have stopped ALL flights in or out from the UK, so that not going to happen anytime soon.I would hope that the infusion doesn't have the same side effects as it goes directly through the vein.
Thanks for the extra information. I remember you saying you were hoping to see your daughter in Hong Kong. What a shame it can't happen soon. We are hoping to travel to the UK in September for a month. By then we won't have seen any of the family for almost 2 years. I hope things go well for you otherwise. Perhaps when more people in the world have had the vaccine ......
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