RA and lung infections

jenzie06

I started taking baricitinib in the middle of Oct 2017. By the end of October I had my first chest infection which turned into pneumonia and lasted for 5 weeks. I managed to take 4 more days of baricitinib and got another chest infection.
Since then I've had almost constant infections and on antibiotics. I've managed 2 weeks of solid baricitinib and i'm not allergic and they seems to work. Yippee. I finished a 10 days course of antibiotics last Thursday and by Sunday my voice had gone again and i'm back to being breathless and feeling rotten. So I'm now on yet another course of antibiotics and they're making me feeling really nauseous on top of everything else.
I've got an appointment with respiratory but it's not until July. I can't keep going on like this. I feel awful.

dibdab

Oh dear, it's horrible to feel so unwell so much of the time.
Unfortunately the disease modifying drugs work by suppressing our immune systems which lays us open to infection.
Have you spoken to your rheumatology team about the constant infections? When I first started on the DMARD drugs I also got constant chest infections, I asked for a change of rheumatologist because I didn't feel that my original consultant was listening to my concerns, the new one is excellent, he shared the concerns and referred me to Respiratory -but he also arranged a whole raft of blood tests and discovered I lack immunity to a particular common cause of chest infections-this was easily remedied with a vaccination that is commonly given to preschool children! Also have you had the pneumonia vaccination? It gives protection for some strains of pneumonia and lasts for several years. The respiratory consultant prescribed preventative antibiotics which I take every day (at a low level), and equipped me with rescue pack antibiotics and steroids for when I am unwell-I am reasonably well controlled now and she discharged me last year.

I would say don't despair, there are lots of DMARDs out there and it may take a while for the right one, or combination, for you to be found. Do try to avoid folks with coughs and colds if possible. Perhaps it's worth asking about seeing an immunologist to check if you're missing antibodies.

I hope you feel better soon.

Deb

stickywicket

I'm sorry, jenzie. I'm afraid I can't help at all. Despite mild asthma my lungs aren't too bad and I don't get many coughs or colds though I was laid low for a month last winter with a chest infection and that was enough.

I guess it's good that the meds are working. I remember you had such a struggle on that front. Antibios can, indeed, make us feel nauseous. Can the GP give you something to help with that?

Otherwise, I can only suggest all the usual stuff - the boring old antibac gel, frequent handwashing, keeping at bay anyone with a cold.

How are things today?

jenzie06

I've been awake since 2am when my eldest came in with a bad dream so I'm a little tired today.

Baricitinib warns not to be around people with colds. I would have to leave home as the boys are always snotty. Not particularly helpful.

Unbelievably my consultant rang yesterday (I'd rung the department to be told that absolutely everyone was at a conference so I left a message after expressing my doubt at the receptionist being on her own) and told me i needed a longer course of antibiotics then I can have another 10 day course if I'm not better.

I asked a while ago about the pneumonia jab and was told it was really difficult to get hold of so they wouldn't bother.

Hopefully these antibiotics will do the trick and i can get back on the Baricitinib.

stickywicket

I hope so too.

Who did you ask about the pneumonia jab? I got mine from the GP not rheumatology.

Kids do pick up germs very easily and, unlike us, recover quickly. It's never too early to try to impose some hygiene standards on them. Just sending them back to wash their hands after using the loo, before meals, after playing outside etc will eventually ram the unwelcome message home. They might even enjoy antibac gel.

jenzie06

Well I'm still battling chest infections.
I'm on my 4th set of antibiotics, had a lung function test and I'm totally fed up.
Still sound like a bloke and get out of breath walking across a room.
I've spoken to rheumatology who said you're due to see consultant but there a major waiting list unless you complain. So i did.
Nurse at gp said pneumonia jab is hard to come by.
Seeing a gp tomorrow, he thinks it might be bronchietasis related to RA wants me to see respiratory asap but my appointment isn't until july.

Fun times.

stickywicket

This is far from ideal, isn't it? I know bronchiectasis can be a complication of RA. but you really need to see someone who cañ help. As for the pneumonia jab - I tend to be asked about it when I get my flu jabs in October. Maybe that's when they have them in.