Question about actemra: On 4th week (1 autoinject... - PMRGCAuk

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Question about actemra

Spanky2019 profile image
12 Replies

On 4th week (1 autoinject shot/ wk) of actemra. Treated for gca for nearly a year. I have other diseases including osteoporosis, multiple gastro problems. Been at 80 mg a couple of times during this journey. Tapering down and just went to 15 mg prednisone. I've just (woke this morning with it) developed sore throat, cough, some chest congestion. I believe it's the common cold. Would you contact dr if you were/are taking Actemra or give it a couple days and see how you feel?

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Spanky2019
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12 Replies
Spanky2019 profile image
Spanky2019

Yeah, fairly new pcp so don't know her that well yet. The response you got is why I think it's better to wait and see. Thank you!

PMRpro profile image
PMRproAmbassador

I suspect it depends on when the next shot is due - and whether your instructions were to stop during a live infection. If it were me I would contact the doctor authorising the Actemra.

Spanky2019 profile image
Spanky2019 in reply to PMRpro

Yes you're right. Gave it a day to see how I'm feeling. Calling rheumatologist office now. I do injection every Sunday. Hoping he doesn't want me to come in b/c 150 miles away. PCP is closer but isn't the prescriber. Thank you.

Blackcatlover profile image
Blackcatlover

I agree with PMRpro. I do the IV Actemra and twice have had to delay my treatment. One time I was just not feeling well and another time it was because of a bee sting. Both times I was turned away by hospital staff. Call whoever authorized the Actemra. There is a good reason you need to be healthy.

Spanky2019 profile image
Spanky2019 in reply to Blackcatlover

Thank you. Calling rheumatologist now.

Jeanfkelly profile image
Jeanfkelly in reply to Blackcatlover

I called the Rheumy helpline as instructed when I had to have anti biotics for severe UTI.

I was told to stop the Actemra injection until I had finished the anti bs & was feeling well.

This took 3 weeks as it was a whole week before the correct antib could be identified.

This happened twice during the first 3 months of Actemra treatment and put me right back to the beginning of treatment as any effect the Actemra may have caused would have been nullified by the break in treatment.

Since then, I have kept away from gatherings / meetings etc & banned visitors to see me if they're coughing/sneezing/have runny nose etc. I can't afford any more delays.

I'm now on my last 5 months of Actemra and have just started reducing .

The feeling is I'm now a bit short of time to reach low single figures as I have to taper very slowly.

Fine by me as I've been struggling to reduce Pred since 2014 !

Take care and good luck.

Spanky2019 profile image
Spanky2019 in reply to Jeanfkelly

I've sent 2 great msg to you today but did something wrong and don't think you got either. Too tired now. Lol Anyway, thanks for great info.

Jeanfkelly profile image
Jeanfkelly in reply to Spanky2019

haven't received your messages.

I see from messages following that you're taking correct advice - you'll be able to resume your injections without too long a break.

All the best.

Spanky2019 profile image
Spanky2019

Just received call back from rheumatologist. He days do not do Actemra this week and do not resume until feeling all better. If condition doesn't show marked improvement by tomorrow, go in to pcp for evaluation. Thank you for suggestions Pmrpro and Blackcatlover. I've been doing so great the past month, hope this is a minor glitch. Hope the sun is shining for you today - it is here.

in reply to Spanky2019

It will be a minor glitch.... Dmard different but I have to stop them for up to a week for infections. I wish they had said before I suffered a bad cold which took a good few weeks to clear.

I can't believe it's a year. Glad you have been doing well on actemra. Hope your cold runs its course quickly and back to actemra.

Spanky2019 profile image
Spanky2019

Hi Dadcue. Stop Actemra until totally well. See primary tomorrow if not improving. My rheumatologist is160 miles away in Mpls. I was thinking he was going to have me come in. My primary is only 8 miles but very rural clinic. Not experience with this stuff. Anyway, hope I get better quickly & continue on the road to recovery. Thank you for advice and concern. Hope you have a great day.

SheffieldJane profile image
SheffieldJane

Get well soon Spanky2019! 🌷

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