I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so far and don't seem to have a chest infection. I also wonder if I should omit taking the Tocilizumab this week.
Any guidance please.
" I've caught the dratted cold that's doing the rounds "
Are you sure it isn't Covid? The omicron variant looks more like a cold than the symptoms of Covid as published by government sites. Tim Spector has emphasised that repeatedly in his ZOE videos.
Can you speak to your doctor - although we have the SIck Day Rules on the forum, we do also emphasise you should speak to a doctor before adopting them, some get very annoyed at what they regard as self-medication. Of course, in your case, doubling it is still a very low dose!
As for the TCZ - you must have a contact number for the rheumatology team? When is the dose due?
Thanks for your quick reply. I don't think it's Covid as I did tests 3 days running as it was starting. I will persevere with the current dose of Pred and try to contact rheumatology about the Tocilizumab, which I can delay taking for a few days without risk.
The real crux is how you feel - if you feel weak, dizzy, confused, even more unwell, then insist on speaking to a doctor as an emergency as that could be the signs of an adrenal crisis developing. I doubt it will happen - but forewarned is forearmed.
Hi PastelsinArt. I have GCA and have been on Pred for 18months Started at 50 down to 5 then up to 30 and back to 2. Hoping next week I can drop one more They started me on the injection Tocilizumab then in Australia we couldn't get any more so I stopped it. I seem to be better without it. I have put myself on Plant Base Eating (No meat,Dairy,Sugar) and find I am going really well. But when I break down and have something I go back again quite quickly I am taking Omega 3, B12 ,D, and Magnesium tablets Hoping I don't miss out on Vitamins Sometimes if my hand cramps up I will take another Magnesium Tablet at night and that seems to stop it. If at night I cant get to sleep I drink another glass of water (Which early on I thought that would only keep me up at night) I seem to go back into a deep sleep. perhaps I was dehydrated. All the best.
can I ask you a question please - how did you get TCZ and how are you getting on with it. thanks
My rheumy decided I should have TCZ and it's prescribed by the hospital. I've been on it since September 2020 initially for a year (that's as long as the NHS is prepared to supply it because of the cost). Because of the pandemic they have allowed everyone to have it till March this year. I've been fine on it and it has helped me reduce my Pred, gradually to 2mg. I did get shingles last October which is listed as an uncommon side effect of TCZ, and was probably the most painful illness I've ever had.
When the prescription comes to an end I may need to increase the Pred. Introducing Leflunomide has been discussed with my rheumy but I'm waiting to see what happens first.
That's a bit of an essay! I hope it answers your question.
I was told I could delay my TCZ for up to 3 days but then of course you would have to take it the same day the following week as your not allowed to take it sooner than a week. Depending on when your injection is due delaying may be your answer rather than not taking. Hope you feel better soon.
Isn't that for convenience (so to speak)? I think you are supposed to delay it if ill and/or on antibiotics - and you would need more than 3 days for that.
I have been on actemra for two years and my rheumatologist has told me to always stop it when I get an infection. I have had an upper respiratory infection and a skin infection where I skipped a weekly dose And I felt fine. I also had to stop it for five weeks when I got shingles. I now take it every two weeks and haven’t had an infection since June when I got shingles.
Which country are you in? I've been on TCZ since September 2020 and it's due to stop this march (due to cost the NHS only allows limited time). I had to skip a week when I had shingles and 2 consecutive weeks when my neutrophils were low. I had no adverse effects from this. However I'm braced for a reaction, either from PMR or GCA when I can't get it any longer.
I am in the US and there is currently no time limit for actemra. I have PMR, GCA and large vessel vasculitis. My PMR is in remission and I no longer take prednisone but I still seem to need actemra every two weeks or I start getting swelling in my temple which was one of my original GCA symptoms. My rheumatologist does want me to increase the time between actemra doses eventually but he is uncertain if I’ll ever be able to come off of it because of a lack of data for cases like mine.
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