No Actemra: Just went to order monthly supply of... - PMRGCAuk

PMRGCAuk

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No Actemra

Spanky2019 profile image
23 Replies

Just went to order monthly supply of tocilizumab/Actemra. For the first time ever I was told to call back next week to see if they have any. She said there is a shortage. Anyone else have this happen? I'm in midwest USA.

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Spanky2019 profile image
Spanky2019
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23 Replies
PMRpro profile image
PMRproAmbassador

There are short term supply issues because they can't keep up with demand due to it being used for Covid patients. It's been discussed on the forum in recent weeks and in the UK I think they are delivering a month's worth rather than the usual larger amount. I assume it will depend where you are in the US.

Spanky2019 profile image
Spanky2019 in reply toPMRpro

Thank you Pmrpro. I've always received 1 month supply cold packaged. I'm sorry I didn't see that discussed already. Hope you're having a good day.

PMRpro profile image
PMRproAmbassador in reply toSpanky2019

Hey, no - not your fault! Miss a few days on the forum and there are probably 60 or 70 posts gone by!

misha453 profile image
misha453

I’m in Connecticut and my actemra is scheduled to arrive on 14 September. Right now My order says “processing” but I won’t know if it’s coming for sure until Monday as it ships overnight.

baxternoni profile image
baxternoni

I am in the Houston area and saw my rheumatologist this week and he said there is a shortage of Actemra because they are using it with the COVID patients.

MsDirecto profile image
MsDirecto

I am in San Diego area. I usually get monthly infusions of Actemra in rheumy's office. Two weeks ago I found out, like many here in the USA, that they can't get the infusion materials because of demands for covid patients. I am waiting to get my first home injection syringe. I'll keep it cold and take to the doctor's office for instructions on self-injection. ?Question for you who are injecting at home: tummy or thigh?

🐬

SheffieldJane profile image
SheffieldJane in reply toMsDirecto

I always inject in alternate thighs, avoiding freckles and moles and avoiding the same spot if possible. I allow the injection to reach room temperature ( about 40 minutes) it doesn’t sting so much. The legs are just a personal preference. I put a plaster on straight away.

scottygirl73 profile image
scottygirl73 in reply toSheffieldJane

I have 3 injections left,got letter about shortage said i would receive call about it still waiting.I am in Scotland.x

SheffieldJane profile image
SheffieldJane in reply toscottygirl73

I haven’t heard from my supplier. Because of a couple of infections and antibiotics, I have a few doses in hand.

scottygirl73 profile image
scottygirl73 in reply toSheffieldJane

One of my injections would not deploy needle,first time ever since i started it.Xx

SheffieldJane profile image
SheffieldJane in reply toscottygirl73

I got one wrong and it squirted all over my bedroom. The delivery people just replaced it free of charge whew!

Spanky2019 profile image
Spanky2019 in reply toSheffieldJane

Yes, I have a couple also. It'll be interesting if supply demand can't meet needs. What a changing world we live in. Can't predict anything. Have a great day.

Spanky2019 profile image
Spanky2019 in reply toMsDirecto

I prefer tummy. Tried it in thigh and it was painful. Very simple procedure. It'll be interesting to see how we do if we're inable to get supplies. Best wishes!

SheffieldJane profile image
SheffieldJane in reply toSpanky2019

The nurse who trained me divided my front upper leg into quadrants and advised injecting them in turn, if that makes sense, so it’s front upper alternate legs, each week.

Suzita76 profile image
Suzita76 in reply toMsDirecto

I’ve been self injecting in the tummy for 2 years, with absolutely no problems ( alternating sides each time, and allowing it to reach room temperature- about 30 minutes). Unfortunately, I’m about to run out of injections. (I’m in the UK). Roche wrote to me to say they were having production problems, and my home delivery service texted me 5 weeks ago to say they’d be delivering a month’s supply each time instead of 2 months, to try to make sure everyone got what they needed, but I’ve heard nothing since.

I went to 2-weekly ( instead of weekly) injections to try to eek out my supply, with seemingly no ill effects., but I haven’t had a delivery since the end of June. Hey ho, we must count our blessings- we don’t live in Afghanistan!

Spanky2019 profile image
Spanky2019 in reply toSuzita76

Yes, We are fortunate in so many ways!

jarn profile image
jarn in reply toMsDirecto

Tummy injection is easiest; tried leg but happier with tummy, if you make a bit of a roll & inject.

Spanky2019 profile image
Spanky2019 in reply tojarn

Yep, I agree. My tummy roll accommodates the injection very roll. For once a little extra fat works for me:)

baxternoni profile image
baxternoni in reply toMsDirecto

Tummy

baxternoni profile image
baxternoni

If Actemra is unable, my rheumatologist will put me on Kevzara which is very similar to Actemra. My neuro-ophthalmologist is in agreement.

Spanky2019 profile image
Spanky2019 in reply tobaxternoni

Thank you for that info. I see my neuro-ophthalmologist Monday. Not sure my rheumatologist knows yet that I haven't gotten latest Actemra delivery. Have a great day.

misha453 profile image
misha453

My Actemra injections arrived today in Connecticut right on schedule. I receive a 3 month supply at a time (6 injections) since I take it every two weeks. Hopefully, any supply issues in other locations are being resolved.

Spanky2019 profile image
Spanky2019

Genentech contacting my dr to get written rx for prefilled syringe. Nurse said shortage is not the medication but injector pens. Who knows anything for sure these days. But they are very nice and helpful there.

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