Anxiety about underlying conditions

[Wheezycheezeball]

I’ve namechanged because I’m usually quite cheery and sarcy and this is unusually angsty and miserable for me.

I’m looking for ways to easy my anxiety about covid. For background four of us & 2 dogs live in a tiny 2 bed house with one loo. Myself and my two kids are asthmatic. I also recently started to take biologic immune suppressant medication for RA. My partner is an recently qualified anaesthetist in a large city hospital with no health issues. I spend my day surrounded by self centred students who believe they’re invincible and that this doesn’t affect them.

I fully expect covid will come into my household eventually, most likely due to my children picking it up from school/nursery and while I’d hope for them it would be no worse than a bad cold of which we have many, I’d be like a dead woman walking if they or my partner get it. I suspect health care workers on the frontline are at high risk making my partner a huge risk too.

We’ve discussed him living elsewhere if it all kicks off at his workplace but I’m still a disabled woman needing help with two children and there is no one apart from him.

I don’t even know where to begin with planning for this. If any one of my family get it, I’m going to get it being the primary carer to my kids. There is no one to help out and by the time they’re symptomatic it will be too late for me and I’ll be on my way to getting ill with it too. There are no specific statistics for younger people with underlying health conditions and people only ever talk about the elderly. I feel like knowing the stats would help my anxiety, even if they weren’t good.

I phoned the rheumatology helpline last week and they haven’t called back. I suspect they’re inundated with worried people. I’d like to know whether to stop taking the medicine or whether the fact it stops inflammation might actually help in an odd way.

I wouldn’t even know what to do with my dogs as there’s no one to take them.

I feel like I am on death row waiting my turn and I’m struggling with that right now.

[EngagedAgain]

Not sure if I can be of much help but I understand how you feel, as I feel the same. I think It's about having someone else to rely on. Whilst I haven't got young children now, there was a time when I suddenly realised that said child totally relied on me, should anything happen to me, and it made me feel quite vulnerable. Now, I'm in a situation where my health is not great, I live with someone who I cannot rely on if I were to be very ill (corona virus or anything else). I find some people even the same age as I who are in good health being quite cocky about they won't get it. This brings home how selfish people can be. Presumably your OH would help you under normal circumstances, so it's mainly whilst this corona virus is around is making you anxious?

[Wheezycheezeball]

I started the new medication 6 weeks ago and there’s an expected paranoia about hygiene and germs for the first few weeks/months anyway but add in this coronavirus threat and my brains gone into overdrive. I assume if the kids get it my partner would have to join us in isolation so I wouldn’t be alone with them and ill but he’s been talking about having to stay away to protect us (me) as he’d be working with people who have it daily putting him at greater risk and he’s worried about bringing that home with him. He’s been alerted to secondment from his usual job if it gets bad in the hospital.

And I keep thinking the what ifs - what would he do if I did get it and die? His shifts aren’t family friendly and there’s no one nearby could help him with the kids. How would the kids cope?

rational brain tells me not to be so silly but then it’s on all the news and social media and all anyone is talking about. I was already wary of general bugs and illnesses but this has me really on edge

[EngagedAgain]

I can see why you're worried about the practicalities of it all. Not knowing what might happen, how it could pan out, depending on if you're children were to get it first or partner. The issue is the potential lack of help, but maybe someone in the medical field or social services would have to help. You're thinking of the worst case scenario, that you will get it and die. That's how I used to feel when my children were young. What would happen to them if I died. Aside from this latest virus, perhaps you should try to address the issue, (to build relationships with people who could help practically if you were ill) Presumably you are usually fairly ok, or do you find yourself thinking about it anyway? I shall have to get some sleep now, but will return to thread later today. I get your concerns, I've been there myself.

[EngagedAgain]

How are you feeling today OP? I have to go out but will check in again later. Maybe also someone else will come along with some advice.

[Gilead]

Have you checked the RA websites. I'm on biologics for UC and am pred dependent. Apparently we're at no greater risk than anyone else with regards to catching it. We may take longer to recover should we catch it.

[Littlemiss74]

I have RA and am on similar drugs. I contacted my rheumatologist direct and he said my immunity will be a bit less than someone else my age 44 not on medication but not greatly reduced. He did suggest trying to manage without the meds but I can't. He said to keep and eye on the BSR website and NRAS have good info too. They say to mKe sure you've had the flu and pneumonia vaccines.

I do know you feel. I have been so anxious lately and my husband travels around the south of england meeting customers and I worry he will bring it home. It's a worrying time. I'm meant to be going to the theatre and out for a meal at the weekend and I really don't feel like going.

[FelineUK]

I’ve got autoimmune disease psoriasis and I’m not clear how CV would affect me. DH has diabetes too. We’re both in our mid-50s.

[Purp1e]

I understand your anxiety. Not personally for myself but I have a 4 year old DD with Juvinile Idiopathic Arthritis.
It’s really scary, I know children “don’t get the virus” (I think that’s rubbish but that’s just me) but what about children with underlying conditions.

Sorry, I’m not much help but your post has been for me personally, I’ll be ringing rheumatology tomorrow. I’ll post after I’ve got through to them ans if they have anything useful to say ill let you know.

[Wheezycheezeball]

Thank you so much @Gilead and @Littlemiss74 the reassurances or even just understanding - they goes a long way to make me feel better. I’m pain free for the first time in five years and it’s wonderful but I will give it up to get through this period if I have to.

My rheum department helpline won’t speak to patients calling about CV so I was never getting that callback I’d hoped for. They now have a recorded message on their helpline saying if you get ill stop taking your medicine until you’re better but when you’re taking it every fortnight or month that’s a hell of a long time to wait to not take it. I should add that I am autistic too so I tend to obsess over things like this and this is part of the reason I need to have so much organised and planned.

I know I’m by no means the most immunocompromised (especially compared to people on chemo) but the whole unknown and ineffectiveness of our government in disseminating info and plans etc just panics me and sadly my brain just won’t stop. If it was just me I’d be ok with minimal outside interaction but my kids still have dancing displays and school concerts that They and I have to attend to maintain normal for them, and they’re hard enough at the best of times. They don’t need to know of my anxiety as it would only transfer to them.

We have agreed once it starts to affect us at home we’ll probably go to my mums in the middle of nowhere. The zombie apocalypse probably wouldn’t affect her village! I almost wish they’d shut down schools to allow us to do that

[Wheezycheezeball]

@Purp1e I heard it was because their lungs are still developing so the virus can’t take as strong with them. I think it’s silly when people say they don’t get it, they just aren’t as symptomatic. I hope your daughter stays healthy. 4 is so young fo that. If it’s any consolation my colleague says they outgrew juvenile idiopathic arthritis

[Wheezycheezeball]

Thank you @EngagedAgain for replying in the middle of the night!

[friendineed]

Keep trying to get through to rheumatology. It may be sensible to stop the medication for a few months, but you need to do it safely

[Littlemiss74]

Be careful stopping the meds. I managed to go a while without and felt fine and then in the last week it's hit me bad and now I realise I can't manage without them, not when I have work & kids to look after. I'm hoping to reduce but for me it's not worth the pain and anxiety that goes with it to stop completely.

[Wheezycheezeball]

Thanks @friendineed - in the past when I took similar medication years back I had to just stop if I got an infection. Worst that will happen is the pain returns but I’ve lived with it so long that I can adapt if necessary

[MyDcAreMarvel]

@Wheezycheezeball is it Humiria you have started?

[thaegumathteth]

OP I know how you feel I think. Me and both my kids are asthmatic, one has had pneumonia before and I've had sepsis.

I know they state statistics for people with underlying conditions but I don't know for people like us - chronic respiratory conditions covers A LOT. We have asthma but other people in the category will have brittle asthma , cystic fibrosis, COPD etc etc etc

[EngagedAgain]

@Wheezycheezeball, that's ok, I just happened to be awake. In my experience all the things I have worried about in the past have never come to fruition, so it's pointless right? Worrying about things won't change anything, it just makes things worse.

[MotheringShites]

I understand OP. I’m on Methotrexate for Psoriatic Arthritis. I have no idea if I’m at greater risk or if they are referring to seriously immunocompromised people (chemo etc). The lack of information can send your brain into overdrive. I’m also recovering from a broken leg so am feeling really weak and run down.

Like you I’d be happy to hole up indoors but I have three children who have a life to continue. It’s all a real worry.

[Littlemiss74]

For anyone with RA this was posted on Twitter by NRAS. Interesting as my rheumatologist did say that I could try and see if I could manage without the meds. Everyone's different I guess.

[bloodywhitecat]

I have a 30 year old DD with chronic, brittle asthma she can't even cope with a common cold as it usually puts her in a blue light ambulance, I am not worried about coronavirus for me but I am for her.

[planningaheadtoday]

I can't remember the name of the drug but it was specifically an RA drug that doctors in Wuhan realised was protecting patients. The outcome for these patients was better.
I think they are trialling this drug as we speak.

You might very well be on the drug that gives you a better chance. I'll see if I can find the literature.

[Purp1e]

I see you’ve already managed to get some information from your rheumatology team.
I rang today and spoke to a real human being.
They gave similar advice. Keep carrying on as normal, if you do come into contact with anyone with it stop taking medication and self isolate, contact 111 and tell them you are immunosuppressed and have been in contact with someone with it/you have it and also let rheumatology know.
I was worried both me and DH would get it and not be able to look after her. I appreciate we are a low risk group but it’s still a concern. Unfortunately they couldn’t offer any concrete advice.
They did put my mind at ease that DD was less likely to get a serious case of it but still to follow the above advice (and any to follow).
They said they were having a meeting this afternoon (this was about 1pm). I asked for the advice/outcomes of the meeting to be emailed to me and for someone to ring me to address specific concerns.
Yes, 4 is terribly young. It has been a nightmare. It’s nice to hear that someone has grown out of it.
Fantastic that you are pain free. I’m really happy for you. Sorry I still haven’t managed to help you out a lot but I did say I would let you know what they said to me. Hope you find some good advice/information and reassurance soon.
I agree it would be lovely to have clarification on what they mean by “underlying health condititions” and to have to hard facts about what’s going on rather than the X number have the virus and X number have died. Personally, I would like to hear about the ones who have recovered.

[Purp1e]

@planningaheadtoday If you find the name of the drug that would be wonderful news. I’m very interested to know which it is.

[Littlemiss74]

planningaheadtoday that is so interesting. Please do let us know.

[Purp1e]

www.wsj.com/amp/articles/regeneron-and-sanofi-planning-to-study-arthritis-drug-kevzara-as-covid-19-treatment-11583872762

After a bit of googling I found this. Don’t know if this is th same one @planningaheadtoday was talking about?

There’s also a lot better information out there about what’s going on and what they're doing (my research skills aren’t the best)