E- mail question.

[lindyloy]

Sorry to bother everyone again, (also sorry if this isn't allowed). Has anyone on actemra/ tocil. received an E-mail from Roche about an "adverse event" concerning this drug? I opened it and it requires permission from me to allow them to access my health professionals, and for me to answer questions. I haven't gone any further as I'm suspicious of all such approaches. Probably quite genuine, but I'm no expert at this. Thanks in advance. To be honest, I don't really understand it and I'm quite thick sometimes.

[PMRpro Ambassador]

Have you a rheumy nurse helpline? Ask them.

[piglette]

The WHO announced recently that there was a world shortage as Actemra is being used for Covid. I don’t know if that has anything to do with it?

Roche’s arthritis drug Actemra has become a key treatment for people with severe COVID-19, leading to shortages, and the World Health Organisation (WHO) wants the company to ensure that supplies don’t just go to wealthy countries.

Earlier this week Roche’s Genentech unit said it was facing unprecedented demand for Actemra (tocilizumab) – known as RoActemra in some markets – caused by the highly-transmissible spread of the delta variant of SARS-CoV-2. The situation would lead to scarcity for at least “several weeks,” according to the company.

[fmkkm]

Hi,The best thing to do is access the Roche website and see if there is any information about this. If they have a help line give them a call. You do have to be cautious because there are lots of criminals trying to steal information. Recently there has been a lot of activity trying to steal Medicare numbers. Occasionally I get bogus emails saying there is a problem with my bank account and I should respond to a link for information.

[123-go]

You're quite right in wanting to know more; I think we all need to be on our guard. If it turns out to be legitimate, all well and good and no harm done. Better safe than sorry.

[DorsetLady PMRGCAuk volunteer]

If you get an email that you are not sure of, if you select the sender - a box will come up with the information - see picture.

If it okay it should show the company name , if it a personal name you don’t know or looks a bit odd don’t click a link.

Click on zoom icon to see larger picture

Email

[jinasc]

Did they leave a name?

[SheffieldJane]

I don’t think I would respond to this. I don’t think drug companies would contact patients direct in the U.K. you could ask the GP/ Rheumatologist.

[scottygirl73]

I used my last actemra injection on Wed,not heard when i will be getting it again,bit of a worry.I did receive the same email from Roche saying about shortages,and apologising for any delay.xx

[scottygirl73]

Update from my earlier reply,just got phone call from pharmacy Actemra being delivered on Wed just 4 injections instead of normal 12.So glad its coming don't need to worry now.xx

[scottygirl73]

It is a worry for us on this med,i do hope you will get it soon.xx

[lindyloy]

I phoned the delivery people and was on the phone for near on 2hrs. before I got a reply. He told me he would ring me back, didnt. I am now waiting for the Hospital Pharmacy, who sent an e-mail to them. I have to ring then if I haven't heard from them by monday. The e-mail from Roche, isn't the one about the shortages, it's a different one about an "adverse event"?

[Rugger in reply to lindyloy]

I had a similar email a year ago, after mentioning to the Pharmacy who deliver my TCZ that I had broken my arm! I said that I'd been feeling so well on TCZ that I'd done too much gardening and fell in the garden. They reported it to Roche as an adverse event due to TCZ.....! I think I tried to contact Roche and tell them that it was nothing to do with TCZ, but more to my own clumsiness - I didn't fill in the forms!

Just ignore it if you haven't reported any side-effects of TCZ.

There's always the Yellow Card system in the UK to report adverse drug reactions.

[lindyloy in reply to Rugger]

Thank you.

[Luciejc]

What State do you live in? I'm in NY and so far no delivery problems. I do know about shortages though.

[lindyloy in reply to Luciejc]

I am in the U.K.

[Luciejc]

I have been very fortunate. After I had to pay $3,100 as a copay for a three month supply from my insurance company, my rheumatologist applied for help from a foundation. I have been receiving a 3 month delivery via UPS from a SD pharmacy. Are you on prednisone also? It did not help me, so I'm on methylprednisolone with Actemra. Wish you good luck, we do not need stress to add to or problems!

[Luciejc]

I am down to 2 mg of methylprednisolone and weekly Actemra after being diagnosed with GCA 2 years ago. I tried tapering lower but these last few weeks I think I have developed PMR. I am also experiencing a tightness in my feet and ankles. I see my rheumatologist on Thursday so will see what happens next. The Genentech Foundation is covering the entire cost of my Actemra. I connsider myself blessed.

[scottygirl73]

Hope it arrives ok.x

[lindyloy in reply to scottygirl73]

It has been confirmed for Thursday, thanks to all for advice.