Tocilizumab moving days.

[SheffieldJane]

Approximately 8 months in to a 12 month course of Tocilizumab, of self-administered injections, it occurs to me that I am spoiling every weekend. My injections have always been on a Friday morning, simply because that is when I started and I was told to stick to the same date and time. I feel increasingly unwell following the injection, quite tired and sick for the next two days, spending a lot of time sleeping but getting gradually better, Wednesday’s are a good day. I want to try moving my injection to Mondays, in the hope that this will allow me to spend quality time with my husband and son. Can anyone see anything wrong with this idea? I am still striving to complete the course. Thanks.

[baxternoni]

Go ahead and change dates. I had to get off of it for one month due to shingles. Then I had to reduce to two injections a month due to low white blood count. Numbers are back up. It is alright to change dates so long as you stick to the new date. You might have to miss one dose. I do not get any side effects from the drug, although right now I might be having a flare. My doctor has ordered a couple of tests to see what is going on.

[SheffieldJane in reply to baxternoni]

Do you know what tests your doctor has arranged for you? The Pred I take and the Tocilizumab would spoil blood tests. My Rheumatologist suggested that my symptoms were the GCA/LVV but they are not what I would expect from a flare.

[Rimmy]

This repetitive 'nastiness' sounds rather horrid Jane and VERY 'boring' to say the least - I just hope you are feeling in the short intervals between shots that you are a LOT better. There is the 'quality of life' thing I always use as a touchstone - after all why are any of us taking meds if not to improve our lives. I realise there are short and longer term goals but obviously they have to be balanced with each other. I am also still dealing with GCA - only with Pred (now on 12mg - nearing my previous lowest dose when I flared about a year ago) and 10mg of Methotrexate which is all I can tolerate as mouth ulcers appeared above that. After 4 years I am somewhat resigned to getting better 'whenever' but felt disappointed they wouldn't 'allow' me TCZ here. So I have been wondering how you are doing and if you felt it was a 'good' drug for you !! 'Otherwise' if there is such a thing hope you are OK - we in OZ have felt some terror for all those living in much riskier worlds than ours has been the last year or so.Rimmy XX

[SheffieldJane in reply to Rimmy]

It is boring and I often feel that my life is ticking away with this sickness. It sounds like you are trapped in a circle of flares and I am taking the “ wonder” drug that makes me feel deathly at times. It is due to be whipped away for cost reasons in 4 months anyway. I am not sure if I have achieved anything at all. Except for one year I took less Pred.I am eternally grateful that Australia is a relatively safe haven against the Pandemic. As you know 8 members of my family live there. I think the U.K. may be climbing out of the Pandemic, the vaccine programme appears to be working well, the number of sufferers is decreasing. I kind of dread the return of the hustle and bustle and the noise. I imagine that all you hear where you are, are your wonderful birds.

[Rimmy in reply to SheffieldJane]

Yes Jane the birds are wonderful here and not surprisingly (Covid or not) I often prefer them to humans. I can understand how the thought of something like the 'old normal' returning with a rush might be a little intimidating. But I hope the TCZ has an ongoing positive effect for you .... XX

[Devoid]

Hi have you discussed how you are feeling with your consultant,and is there evidence it’s doing you any good? It could be it’s just not the right drug for you and there are alternatives.

[SheffieldJane in reply to Devoid]

The presumed efficacy seems to be based on symptoms alone. Nothing I experience is what I thought of as typical GCA symptoms. Perhaps the cure is almost worse than the disease? Apart from the consequences for eyesight and the Aorta, of course.

[PMRpro Ambassador in reply to Devoid]

Alternatives ?

[SheffieldJane in reply to PMRpro]

There aren’t alternatives for GCA except resuming the dance with Pred that has started to damage my health - cataracts, pre-diabetes, hypertension.

[PMRpro Ambassador in reply to SheffieldJane]

I know - I was asking Devoid what they meant.

[Devoid in reply to PMRpro]

Hi by alternatives I was referring to stopping tocilizumab all together or methotrexate works for some, not that I can vouch for that

[powerwalk]

Sorry to hear your battle with this Jane, I hope you get your timing sorted so that you can have better days. Obviously I don't know anything about this drug just wanted to wish you better days. God knows they can be few and far between at times!

[SheffieldJane]

I still think it was pretty good to get from 40 mgs of Pred to 10 mgs in a matter of weeks. I conclude that Tocilizumab did make that possible.When I try to get below 10 mgs I experience a headache that I recognise as a GCA type headache, unless this is all about fear of falling without a parachute ( eyesight). I put the fortnightly idea to my Rheumatologist but she said weekly will be more effective. In GCA /LVV terms I am in the early days.When I got down to 3 mgs my diagnosis was just PMR. A scan diagnosed the GCA/LVV at that point, as I had begun unusual headaches.

Thank God for the “strange” guys and gals in this forum.

[SheffieldJane]

That’s true. I am aware that a kind of malaise has descended that has reduced my efforts to maintain physical fitness, that won’t be helping. Perhaps now spring has almost sprung, I can get moving again.

[Rugger]

I changed my day from Fridays to Wednesdays after I had to miss 2 doses due to low neutrophil count. The blood result came back as satisfactory on a Tuesday and the Rheumatology nurse said I could re-start the TCZ straight away, on the Wednesday. So I'm sure you can change the day. You've had to miss more than just a couple of days yourself, I seem to recall.

Enjoy your weekends! 🌷

[SheffieldJane in reply to Rugger]

That’s helpful especially as it is the same team that would advise me. I missed injections for antibiotics but always returned to Fridays. One of my injections showed an effect on my liver enzymes my GP just said carry on with the injections. With the second test she just said it was fine. They are never reassuringly forthcoming. I think they resent doing what they see as my Leeds Rheumatologist’s work. I thought it was daft to travel to Leeds for a blood test. I haven’t brought forward my next appointment with Sarah because I simply don’t know what to do and I know that she will make it my choice.

[PMRpro Ambassador in reply to SheffieldJane]

I assume they do the MTX monitoring? It's their job ...

[SheffieldJane in reply to PMRpro]

My GP practice is unrecognisable since the Pandemic took hold - stressed, rushed, resentful, unappreciated I guess.

[PMRpro Ambassador in reply to SheffieldJane]

You'd think they might be grateful not to have to meet f2f with the great unwashed ...

[PMRpro Ambassador]

Can't see why not - if you had to suspend it for infection reasons you have more than 7 days and you can then choose the day that suits to restart. What's the difference? Ask Sarah.

In the trials they did weekly and biweekly injections and there was very little difference in the remission rates, the main difference was in the level of adverse effects of all sorts. I wonder if the fact that doing it biweekly (which would allow double the duration of therapy for the same cost) isn't factored in in the UK makes doctors use the weekly approach whatever in the hope of getting a slightly better result?

[SheffieldJane in reply to PMRpro]

I have wondered that about the weekly approach. You get 12 months irrespective of whether you take it fortnightly or weekly. Therefore it would be half the amount, unless I just quietly did it 😳. TBH I have been avoiding Sarah because I don’t feel ready for the conversation about stopping Tocilizumab altogether. I am due my next appointment in May.

[PMRpro Ambassador in reply to SheffieldJane]

They don't delay the deliveries though apparently to make it last longer!!

Now then - not speaking to Sarah only delays the inevitable which won't change just because you don't recognise the elephant in the room

[SheffieldJane]

It lives in the fridge with a healthy use by date. Sarah would be obliged to change my prescription to fortnightly, for the remainder of my 12 months my delivered supply would be halved. I feel vulnerable facing doctors when I haven’t decided what course I want to take. I think this is particularly true with our conditions where there has to be a degree of “ educated” guess work. I am aware that the elephant is there and I am trying to face him and I don’t want to lose control of him.That’s what you get for educating patients. I will never take Methotrexate or AA. Decision already made.

[Grammy80]

Jane, When I got that staph infection last September, the Dr. said, "Stop the TCZ," and when it was cleared after six weeks, I started up again with no noticeable effects . At that time I also started taking it in the evening. Good luck 💖💖

[SheffieldJane]

Thanks Grammy! I hadn’t thought of shifting the time to the evening, genius! I didn’t know you were back on it either. 💖💖💖

[Grammy80 in reply to SheffieldJane]

There are times I forget more than I remember....and that could be a good thing. xo

[Constance13 in reply to Grammy80]

Join the club!😂😂