Tocilizumab and sinusitis 🤧: Hi Peeps, I hope this... - NRAS

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Tocilizumab and sinusitis 🤧

Moomin8 profile image
20 Replies

Hi Peeps,

I hope this post finds you as well as you can be today 😊

I have a question:

I have sinusitis and can't shift it. I have Tocilizumab and Metoject injections weekly. Has anyone had antibiotics that shifts sinusitis? I know we're limited to which antibiotics we can take, but this is really not fun. I know we can't fight infections very well with these pesky meds. 😏

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Moomin8
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20 Replies
ruth_p profile image
ruth_p

It might not be bacterial it could just be a side effect. Have you tried any sort of nasal spray first thing in the morning?

Moomin8 profile image
Moomin8 in reply toruth_p

Hi, yes - I tried all of the usual bits and bobs. I went to my GP this morning and have been prescribed Doxycycline.

Lolabridge profile image
Lolabridge

I have read that TOC side effects are nasopharyngitis and upper respiratory tract infections. I’m on TOC and find I need to keep blowing my nose!

Moomin8 profile image
Moomin8

Hmmm... poor you 🤕 I have a constant chesty cough. But I don't mind, tbh, if the meds are working 🤞

Lolabridge profile image
Lolabridge in reply toMoomin8

Yes I get that too from time to time and need antibiotics ☹️ and usually Doxycycline!

Moomin8 profile image
Moomin8 in reply toLolabridge

Snap! Does it kick in quickly for you?

Lolabridge profile image
Lolabridge in reply toMoomin8

Yes fairly quickly. It’s annoying having to stop the TOC though until I have cleared the infection!

Moomin8 profile image
Moomin8 in reply toLolabridge

I was told that I didn't need to stop anything 🤔

ruth_p profile image
ruth_p

I’m on toc too and I always wake up with a stuffy nose but it usually goes away soon after.

Moomin8 profile image
Moomin8

Yes, same - but accompanied by a hacking cough. This was different though. We are pretty good at knowing ourselves - we have to be, don't we.

Jimminey profile image
Jimminey

I have no idea if this is quite relevant, but just in case... My GP has prescribed me Avamys steroid nasal spray for swollen nasal turbinates - swollen as a consequence of Covid. He said the alternative was antibiotics.

Moomin8 profile image
Moomin8 in reply toJimminey

That's great advice 👍 Thank you. I hope it worked for you 🙂

Moomin8 profile image
Moomin8 in reply toJimminey

nhs.uk/medicines/fluticason...

I found it - thanks 😊

Jimminey profile image
Jimminey in reply toMoomin8

I must admit I was only prescribed it this afternoon. Thanks for the link.

Hairbraid profile image
Hairbraid

hi I was in it all last year and had non stop sinus problems side effect was given dymista spray and sterimar and referral to ent had to come off it had allergic reaction and then once stopped it sinus cleared up big hug

Moomin8 profile image
Moomin8

That was very frustrating for you, I imagine 😒

SheilaT3271 profile image
SheilaT3271

Ive had what have felt like a sinus infection for years. I’ve been on biologic since 2017 and specifically Kevzara (a monoclonal IL6 sarilimab biologic similar to Toc for a year now). I’ve often thought this infection won’t shift because of the immune suppressant and been prescribed nasal sprays and rinses with some limited success as well as Fexofenadine (an antihistamine) to help with the headaches. That said my identical twin also suffers sinus issues and doesn’t have any autoimmune so maybe it’s just in our genes.

Moomin8 profile image
Moomin8 in reply toSheilaT3271

That's interesting 🤔

Biofreak profile image
Biofreak

It's a well known fact that taking immunosuppressants as all biological treatments are, leave you wide open to infection. It's the cost of needing immunosuppressants to deal with the rheumatoid arthritis. You have to weigh up which is worse. I have chosen to take immunosuppressants, in my case Abatacept. The Abatacept keeps my RA under control and allows me to have a life. The consequence is that I have a weakness for sinus infections and excessive catarrh which is very annoying but the Abatacept is effective. So I see it as an annoyance but preferable to constant pain. As long as you get effective treatment for the infection, be it sinus or chest or anything else, for me it's tolerable. When I think back to how incapacitated I was by the rheumatoid arthritis I know which I would choose. Having said that if the Abatacept didn't work I wouldn't tolerate the consequences because what would be the point. You have to decide which is worse honestly. Best wishes xx

Lolabridge profile image
Lolabridge in reply toBiofreak

Yes I agree. I’m also happy to deal with those side effects to have my RA under control and continue to live independently.

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