Immune suppressed husband on a ventilator!

calash27

Hello everyone,

My husband has psoriatic arthritis and was on methotrexate and luflunomide. After not feeling well in the new year he has ended up in intensive care on a ventilator with a rare form of pneumonia called PCP. He's only picked this up because he's immune system is suppressed.

I'm just wondering if this has happened to anyone else on these drugs and what happened about you getting different drugs after? I'm really worried about the future for him.

Thank you

Sharon_K

Hello @calash27

welcome to the community, I am so sorry to hear that your husband is so unwell at present and in hospital. Unfortunately as you have said your husband is on medication that supresses his immune system. This does make us more prone to picking up some nasty bugs. I personally have not had anything too severe but I am very strict with family and friends. If they have a cough or a cold I tell them not to come over. However right now that doesn't help you. If you can ask his team to talk to you and expain things to you so that you are confident that may be a first step. Look after yourself so that you can be there for him as he improves.

We are here so please message as much as you like and let us know how both you and your husband are. We will be here to support you through this really tough time. I am sure we have got members on here who have had pneumonia in the past and who will be willing to share with you.

Meanwhile

Gentle hugs and please keep us update

Sharon

stickywicket

Of course you will be worrieď.

About a year before covid rocked up I got à cold that got on my chest. I was sure I ould handle it but ended up in re-sus and then on a ventilator for several days with pneumonia and a collapsed lung. They dug lots of gungè off the lung. But, as you see I made a total reovery. And no problem since.

Then, as now, I was on two immunosuppressants - methotrexatw and hydroxychloroquine..The thing is, we have to be on these meds because it's our overactive immune ßyatems that cause the problems in the first place. PsA for your husband and RA for me. We just have to, as @Sharon_K says, do our best to keep away from coĺds, flu, viruses etc. And ensure that people with them stay away from us, however much we may want to see them. Plus, I always skip my meds for a week at the first sign of à problem but you'd need to check with his rhèumatologist about that.

I do hope things go well and he'll be home again soon.

calash27

Thank you so much for your replies. We knew he had to be extra careful going on these medicines but I don't think either of us had grasped how at risk he was to random, rare things flying around that could potentially kill him!

It has so far been the worst and scariest week of my life. I was told on a daily basis that my husband is seriously ill and might not make it. Thankfully he has turned a bit of corner and is now breathing for himself, although still currently on the ventilator.

At the moment I don't want him to go anywhere near those drugs ever again! But I know he's going to need something. His rhuematologist has been talking about a biological drug for a while, but my husband needed to satisfy all the NICE guidelines in order to qualify for it! Does anyone know about this drug, does it also suppress the immune system?

Thanks for listening!

calash27

https://community.versusarthritis.org/discussion/comment/703845#Comment_703845

Just wondering how long you were on a ventilator and how much rehab you needed? Thank you

Woofy

https://community.versusarthritis.org/discussion/comment/703846#Comment_703846

So glad your husband is doing a little better.

jamieA

https://community.versusarthritis.org/discussion/comment/703846#Comment_703846

Hi @calash27

I'm no medical expert and might be wrong but I think all biologics - and there are a large number of them - leave you immunocompromised. I was diagnosed with PsA in October 2020, put on sulfasalazine immediately and less than a month later was hospitalised with CAP - community aquired pneumonia - and had a patch on my lung. I wasn't on a ventilator but was on a full facemask oxygen supply. I'd had a large number of chest infections - and probably covid - in the months before the PsA diagnosis and ended up with 3 bouts of pneumonia after it but I cannot say if the sulfasalazine had anything to do with it.

I was put on methotrexate in February 2021 and then an adalimumab biologic in July 2021. I haven't had a recurrence of the pneumonia since March 2021. I am now taking sulfasalazine, methotrexate and adalimumab.

Since the PsA is effectively my immune system attacking my joints I suppose any fix is going to alter the immune system and possibly leave me more at risk. I carry an alert card for my adalimumab. I have altered my lifestyle and I'm more careful in many aspects of my life - extra cleanliness, what I eat and drink, where I go etc. My family keep away from me if they have colds, flu, covid or anything else contagious or infectious.

I hope your husband recovers soon.

stickywicket

I think I was on the ventilator for 3-4 days but it was clearly a different one to your husband's as mine went down my throat and I couldn't eat, drink or speak. (My family quite enjoyed the latter😉)

There was no re-hab as such, just making sure I could breathe and still breathe when walking. That was a bit scary at first as I couldn't believe how difficult it was but I soon recovered and never looked back.

I'm very pleased your husband has taken a turn for the better and I hope that continues.

I'm sure @jamieA is right about biologics/biosimilars. To the best of my knowledge there is no way of dealing with an overactive immune system other than by suppressing it. It will seem scary, especially right now but remember loads of us are on them. I've had no recurrence of what happened to me but i wouldn't dream of abandoning my immuno-suppressants. Being diagnosed way back in 1961, I spent several years without them and have the body to prove it!

Take one step at a time, speak to the docs who are caring for him now and to his rheumatologist. Have all your covid and flu jabs and stay away from anyone who is coughing or sneezing. Many of us do this all the time. It becomes quite normal.