Don't know what to do - immunosupressed

[OriginalTaste]

I am at a loss..

I have IBD and have infliximab infusions, my next one is next week. I have asked the IBD team and my employer (a very well respected University) for advice, given I work in a hospital (albeit in an admin role). I have asked if I should work from home following my next infusion, and have been met with "ask your Dr" and "ask your employer", and the ever helpful "if you feel you should".
We have confirmed cases here, though as far as I know I have not come into contact with anyone with direct exposure..

What would you do?

What a difficult situation *OriginalTaste”. I think a lot of people are waiting for clear guidance and advice but really there isn’t much about.

Do you think the infusions reduce your immunity? If so, do you know how long for? It’s not something I know anything about so excuse my ignorance but what would happen if you missed the infusion?

How much of your job can you do from home?
What would happen if you said to your boss “I am working from home for x days/weeks after my next infusion for health reasons”? We can self certify for 7 days, I think.

Thanks for the reply.

Yep, the infusion is like a chemo-type drug, it swamps my A-cells to stop, or decrease, the desire for my body to attack itself. I have them every 10 weeks. After 8 weeks the effect is wearing off to the point my symptoms start returning. If I missed one I could go into a full on flare which would result in a hospital admission.. I've not been advised not to have it..

I can do all but about 5% of my job at home, I already have a laptop and VPN. My boss is a little old fashioned and doesn't believe in panic, but I think I will just say to him I will work from home following my next infusion until we have a clearer idea of the situation..

There's just such limited information available and no one is confident enough to actually commit to giving advice!

I think that's a sensible precaution Original, and if you can do 95% of your role at home, then hopefully your boss should allow it.

I guess if he's not happy about it I could just send the request to HR, and explain the situation - not really prepared to put myself at risk for the sake of sitting in an office..!

Sounds a good plan.

In this situation with so little clarity and guidance, I think those of us with health problems should not worry about being assertive about taking sensible precautions.

My DH has IBD and also has infliximab. He also thought about postponing his treatment but I think the flare symptoms would be worse than the risk.

Fortunately he works from home a lot already. One of his colleagues has CV and I am encouraging him to WFH for the foreseeable future.

Good luck! It is very difficult to balance the risk

I was reading that that some with immunosuppression seem to cope better with covid19. Something about the worse lung effects are a result of the immune system going overboard rather than the effect of the virus itself.

Thanks all.

@AshGirl I think you're wise to encourage him - I have to admit I'd be more worried about a big flare than CV at the moment, so wouldn't want to delay the treatment.
@speakball it's not all bad then, it could go in our favour being immunosuppressed!

I had heard that about immunosuppression too speakball but I can't recall where. It might have been here. Do you have any links please?

I also work at a university in an admin role. We've had an email from the President today saying that anyone who is immuno surpressed should work from home with immediate effect, and that anyone else who wants to can also do that with their line managers permission.

I'm having chemo atm in 6 week cycles where I'm fine for 3/4 weeks of it but currently off work sick due to taking an extended maternity leave, but if I were back at work then I'd now have to work from home.

multiple-sclerosis-research.org/2020/03/dmt-use-during-the-covid-19-epidemic-needs-to-more-pragmatic/ @TonOfLead this might be the reference you’re looking for - it’s just a hypothesis at the moment but it sounds logical. Keeping my fingers crossed that it turns out to have some basis in fact.

@Cardboard33 I'm glad you have received actual, firm advice, we haven;t had anything other than a flurry of 'wait and see' and 'business as usual', and if you want to work from home it's your decision/on your head be it but we must first discuss with line managers..!

I hope your chemo goes well

I've also got IBD,and associated enteropathic arthritis. I take immunosuppressants - methotrexate- and a DMARD, sulfasalazine. My lymphocytes are very low at the moment but I can't work from home.

I'm pinning all my hopes on the hypothesis that immunosuppression may well be protective here, especially as I read China were trialling DMARDS in critically ill patients

"if you feel you should" sounds like an agreement to me.. I would WFH if at all possible in your situation.

I'm intending to ask today.. they might say no, which is fair enough, but if they say it's up to me then I definitely will.

Yes you should definitely work from home after infliximab if that's possible for you.

@originaltaste we've had daily if not multiple daily emails regarding it and the college position. Like your uni seems to be, we are also an NHS trust and a lot of our academics are the "experts" on the news so I guess they need to show that they're treating their staff with respect too. I've also PMed you btw.

Thanks Iorderedyouapancake.

I'm not on any of the meds mentioned in the article, but I'm going to pin my hopes on immunosuppression being possibly protective of the worst effects.

Work from home. Don’t gamble with this.

I'm not on any of the meds mentioned in the article, but I'm going to pin my hopes on immunosuppression being possibly protective of the worst effects.

Me too. I have no opportunity to work from home. I guess the best that I can hope for is that the government order the at risk groups to self isolate and protect our jobs.