Slight Cold and Actemra

[Lenore58]

I caught a slight cold over the holidays which I’ve had for about a week and a half. It’s been nothing more than a runny nose and congestion. Very mild. I decided to skip my 6th Actemra dose last Friday until it clears up. It’s almost gone but has settled in my sinuses. Tomorrow is Friday and that’s the day I take my Actemra. Do you all think I should skip it a second time or does it sound safe to go ahead and get back on schedule?

Also, I saw my opthamologist yesterday, to check my right eye which has been hurting. The pressure was 18, which is higher than before, but he said still in upper normal range. I have an appointment in a month to watch it. Besides the diplopia, my vision is good in each eye. He agrees that the painful eye was likely caused by sinus pressure from the cold. Has that ever happened to any of you GCA’ers?

[Frenchduck]

Hello Lenore58I'm sorry this reply is too late to answer your question about Friday. I take Actemra weekly. I was on it for nearly 3 years and had tapered it to once every 4 weeks. After stopping it last April, to see if my GCA had gone away, the inflammation steadily increased and a PET scan confirmed that the disease was still active so now I'm back to weekly injections.

I don't think it is a good idea for you to stop doses so early in the treatment. I don't know if you are on any other medication for your GCA?

One thing to know is that one of the common side effects of Actemra is sinus problems. It's the side effect that I have experienced the most. Sometimes it feels like a cold - lots of sneezing, runny nose and eyes but it actually isn't. I've got used to it although it can be annoying. It usually starts to wear off a couple of days before the next injection is due! If I'm not sure if it is a cold or not I take my temperature. If it's normal I assume it's the side effects of the drug. Having said that in all the time I've been taking it I can't remember having a cold. I had covid once.

Not sure if any of that helps but good luck with your treatment.

[Lenore58 in reply to Frenchduck]

Thank you; this was very helpful. I appreciate you responding! I wasn’t aware of the runny nose/sinus side effect. It’s the first time this possible side effect had shown up, and I’d been around people with colds over Christmas so assumed I’d caught it. I’m currently on 25 mg. prednisone, after starting at 60 in October. I d have osteoporosis, so want to get off of it.

Another question: do you mask in crowds?

[Frenchduck in reply to Lenore58]

YES! I learned that lesson the hard way after catching Covid at a conference last summer. Flew to Newcastle 3 weeks ago and wore it both ways on the flight. My husband and I were the only two wearing them so all the more reason!It was the same in the shops so we wore them all the time in crowded indoor places. When we ate out we chose restaurants that were spacious. The whole time we were there (over 2 weeks) we saw only one other person wearing a mask.

[Lenore58 in reply to Frenchduck]

My flight for Christmas was the same; almost no one wearing masks. I masked both ways also. My doctor advised me to mask even around family indoors; I found that very hard to do…I failed! And I haven’t been masking in stores, etc. I did mask for a highly attended Memorial service yesterday.

What part of France are you in?

[Frenchduck in reply to Lenore58]

We live in the South West about and hours drive west of Toulouse. In winter we go to Spain for the sun so my flights were from there.

[nallufl24]

I agree with Frenchduck. I’ve been on Actemra infusions for 2 years. A runny nose is a side effect from Actemra. I carry tissues with me at all times. I’ve never stopped my infusions but since I’ve been on them I’ve never also had a cold or any type of infection.

[Lenore58 in reply to nallufl24]

Thank you for responding; very helpful! Do you bother masking in crowds?

[Lenore58]

I lived in Aix en Provence from 2013-2016, and got to finally go back this past summer. I’m so glad I made the trip before GCA showed up!

[nallufl24]

No, I do not mask in crowds. I do try to wash my hands often but I can’t say I use any special precautions. I don’t work so I’m not around a lot of people on an every day basis.

[Lenore58 in reply to nallufl24]

Thank you!