Anybody else been told their Tocilizumab will be late due to a national shortage?
I just got a text today to say my delivery will be late, I rang Lloyd’s yesterday as have used my current supply and hadn’t heard anything. It says I’ll hear more by post?! Why could they not have told me earlier so I could spread my doses out? Am pretty anxious as this could have repercussions in terms of my ability to work.
I'm so sorry to hear this, there seems to be growing shortages of many things, or at least I'm becoming more aware of them (?).
It would certainly seems so. Im sure there are people in far worse positions but a bit of forewarning would have been nice though!
Hi yes I’ve received a text too .. I knew they were using this drug for Covid I’m wondering whether that’s why … I feel lucky as I received a delivery last week but feel concerned for others because I know if I missed even 2 weeks I’d be in trouble . Let’s hope they get this sorted soon .. C
I really hope so as once a flare kicks in it’s very hard to get back on an even keel. A bit stressful tbh
I’ve just googled it .. the shortage is potentially from August to Jan 2022 ., not scaremongering just wondering if us Toci folk should maybe consider fortnightly injections rather than running out . . Maybe worth a call to our rhumi teams but don’t stress anyone as that’s not good for our creaky joints ! Take care
Yes I've had a message today about shortage hope they sort this out ASAP its a life saver for me
At least people's lives were saved may do 2 weekly I injection like Claire say hope my joint play nicely .
Yes i recieved the same text yesterday. They where using tocz at one point as a treatment for covid patients could this be the reason for shortage?
I assume so, probably exacerbated by delivery and staff problems.
Yes l received the text about the shortage ..l believe the hospitals are using it more ..fingers crossed it won't be for long 🤞
Yup - me, too. So great having an RA drug they’ve identified works for COVID. Not. Yet, people don’t wear masks. I was frankly waiting for this text as we are deprioritized for COVID patients. Can’t scale med production that quickly… Ugh!
I could not tolerate tocilizumab and have an unopened box of 4 prefiled injections, expiring next month. What a waste, I'm sure many of us are the same with expensive unused medication lying in cupboards 😥
I have received the text as well. I have been left to run out before next delivery, my next is due Thursday so I will wait and see. I emailed and rang several times before my last delivery so I missed a dose altogether,it did not take very long for the tiredness to kick back in.
I am taking it but haven't heard of a shortage. I do know it's being used very effectively to treat the bad cases of Covid-19 and I was wondering when this issue would come into play! I plan to order my dose EARLY so I always have an "extra" supply on hand (2 extra injections) I do know (in my case) that I've had to stop using this due to infection and/or surgeries upcoming. Honestly, skipping my dose once or twice didn't affect or increase my RA (of which mine is a very bad case I'm told). Actemra stays in your system for a while after you stop it but it's different for everyone.. If worse comes to worst and you have to skip a dose I think you should be ok but it's not something you really want to chance. I think it won't come into being a huge issue because we REALLY need this drug and the manufacturer knows this!
Do you know how long it stays in your body for ?
I honestly have to say EVERYONE is different with that. I stopped taking it for 6 weeks due to a surgery recovery issue and my RA did NOT flare up at ALL. Oddly, I am taking this medication every 2 weeks faithfully on time and I am flaring up so I do not get it at all. I do know my Rheumatologist told me that I didn't flare during that timeframe due to residual medication in my system. She said everyone is different but some people can go for several weeks without it and their illness stays under control whereas others skip just one dose and their illness becomes very active. I wish I could help more on this. It is a very positive thing though that our medication is saving lives with Covid-19. My RA told me that taking this during the Pandemic situation might be advantageous as compared to some other medications.
I very much hope so. I’ve missed doses in the past but it was the ambiguity of the text as to when the next delivery would be and the fact I have no spares atm. It’s great that it’s helping Covid patients but fingers crossed Roche manage to meet demand.
Yes! Fingers, toes, legs, heck., cross anything that can be crossed! We rely on this medication so I'd have to (well I'd like to anyway), think that our lives matter and the medical company will be on top of the situation..Sadly, I can't be sure. Here in the US it seems that the might dollar oversees life for medical companies and pharmacies (and) insurance companies..
My daughter to me when I told her..well mother they had to save people lives 😂
If anyone is lives close by me merseyside Liverpool I have a couple spare if that helps anyone
Hi everybody, I live in Brazil, my last TCZ monthly infusion (450mg) was on March 29th and in April they told me about the shortage of the med because it's been used to treat Covid patients. My rheumy wanted to change it to Orencia? is it? but I didn't, I was mad about the unfair situation! Long story short I haven't had any flares so far, my blood test results are excellent just a little low on vitamin D. Also, I started practicing some hiking, maybe that helps me too. My advice: try not to get too anxious about it, if possible...
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