How to get a grip on my anxiety - vulnerable

[Littlemiss74]

I am on immunosuppressants & have been pretty anxious since the start of all this. I spoke to my consultant and he said that due to my meds my immune system will be suppressed a bit but not massively due to the dose I am on. Despite this I keep thinking the worst will happen if I catch the virus.
During the summer I started to feel less anxious as cases went down and I felt reasonably safe being outdoors.

Now cases are rising even in our relatively low case area & there have been cases in local schools. I am starting to feel anxious again. We are not really going anywhere apart from supermarket but I worry about my dc’s getting it at school & passing it to me. I feel like it’s out of my control & that it’s starting fo feel inevitable that it’s just going to rip through the local community and we’ll all get it.

I just feel an underlying level of anxiety all the time & am finding it hard to think about anything else. I don’t want to worry my dc’s, thankfully they don’t seem worried about it at all. I have tried to talk to a couple of friends but fear I am coming across as overreacting.

I just wondered if anyone was in similar position and how you are dealing with it. I don’t want it taking over my life when I may not even get it! Thanks

Obviously I don't know what immunosuppressants you're on. But I am on two (and at one point during all this was on there ). This has had me in the vulnerable list since the start but I'm not remotely bothered, haven't shielded and work as a teacher.

My first point is I had covid in march. Confirmed by my Dr . I was taking two immunosuppressants at the time and it was very mild. My husband who takes nothing had it worse.

My second point is they're currently trialling immunosuppressants as a way to treat covid. There's several papers on the research and the info has been released by the charities for the illnesses I have (ie - it's not hearsay.)

I can't totally reassure you of course and I don't know what you take. But my underlying issues and drugs don't worry me

*was on three. Not "there"

@OpheliasCrayon thank you that is very reassuring to hear. I suppose the thing is it seems to vary much person to person anyway and there
is no of knowing how it will affect any one person.
I am trying hard to think positive but then something will happen like another case at school & start to feel anxious again. Anxiety is so draining🙁

It does. I've always had a very good immune system (maybe my job) despite being on these meds for years. Actually it's the ones I've started recently which for the first time have lowered my white count. But I still can't be bothered to worry about it. I wouldn't stop my kids going to school or stop working. But as you say it's person to person.

Anxiety is horrible though I know - I don't have it usually but I did when I was pregnant both times and it was absolutely horrifying. Not helped by the fact that I then had a stillbirth (which may sway the way I feel about covid as I just couldn't care less - I feel like the worst thing has happened to me already so I can't find it in me to worry about this). But I do understand how you feel and very unsettling because we can't get actual answers about how covid might affect us. Hopefully you'll be ok as I was if you do get it though. There's every chance I'm sure.

Anxiety is awful, I have it too.

@OpheliasCrayon i’m so sorry to hear that & it certainly puts things in perspective. My problem has always been worrying about things that haven’t even happened yet. DH & some friends say don’t worry until there’s something to worry about but it’s not that easy when you are an anxious person. I wish I could just switch if off but thats just the way I am I suppose. I need to try and do some positive things I think to boost my immunity; more exercise, eat better, more sleep etc. At times I have felt low and struggle to find the motivation but at least if I did this I would feel I’m doing the best I can to make myself stronger & healthier. The last few months has been stressful, DF is in care home & had the virus, recovered but
very frail. DM is I think mildly depressed as she cant see him so am worried about her. Then WFH with homeschooling & a hormonal teenager & a couple of flare ups of my condition I feel physically emotionally drained as I’m sure many of us do!

@OpheliasCrayon out of interest what is your job, if you don’t mind saying? I think when you are put on these drugs you can be made to feel the fear of God put into you, I did and I think that has stuck with me. However I have reduced the dose a lot since I first started so it could be worse and I don’t think my consultant is overly concerned. It’s just me and my overactive imagination!😳

Of course - im a Special Needs Teacher. I've worked in schools for the same duration that I've been unwell with chronic illnesses so about 15 years. Prior to being on immunosuppressants (and also as well as being on them) I've taken absolutely massive doses of steroids for very extended periods of times and other than a few bouts of Thrush and UTIs... I've never found that anything I've caught at any point in 15 years has been any worse than anyone around me. As in, despite all the meds if my husband and I get the same thing I don't get it worse.

I was terrified at first about being put on them. I put it off for ages. But then I had no choice and I had to. The list of side effects for them is absolutely insane so I totally get why you're worried. I don't really think about it anymore. I don't know what illnesses you have or what you take, but over the years I've just had to resign myself to the fact of it's a risk to take the drugs yes , but then if I don't, I'm guaranteed to be incredibly unwell and in hospital and likely to have to have major surgery to remove my colon, so it's worth it to take the risk of the meds.

I do understand where you're coming from and I understand why you're worried. But also consider that if you weren't taking your meds I presume that you, like me, would also be very unwell. You don't take immunosuppressants if you don't have a serious issue that needs treating. And that also would make it very difficult to fight of something like covid. I know when my illnesses flare then everything feels worse, and I find it harder to fight stuff off (so actually I fight stuff off better when I'm on immunosuppressants than when I'm not.)

It's a horrible situation to be in and I get why you're anxious. And just because I'm not doesn't mean I think you're being silly.

I'm sorry that your DF has been unwell but I suppose take heart that he is in the greatest risk group himself but had pulled through.

It's good that your doctor's aren't overly worried - mine aren't either.

What are your illnesses if you don't mind my asking? I don't mind if you don't say but I have ulcerative colitis and ankylosing spondylitis (inflammatory arthritis) so I wonder if there are any similarities that might make what I've said any more reassuring.

Oh since I've said everything else there - you may as well know I take adalimumab and methotrexate and until a few months ago azathioprine

@OpheliasCrayon i also take those two! The meth I have managed to get down to a very low dose usually once every 3 weeks & the other one by injection every 3 weeks. Similar to you i haven’t really had anything worse then my DH and very rarely get colds. I have RA and exactly as you said I know I have to take the meds to prevent flare ups & basically a life of pain. It is much better than when I first got it and so have been able to reduce the frequency and dose. I am aware that stress can cause flare ups which is another reason I need to try and curb my anxiety but it seems to just be part of who I am, I have always been a worrier.
I feel more reassured now to hear that you were ok when you had the virus and you take the same meds as me. Maybe I am overly worrying.
Thanks for sharing, you’ve been a big help.

So may be helpful for you to know that back in March when the shielding info was sent out, the college's of gastroenterology and rheumatology set out their own guidance for our risk.
Taking methotrexate and adalimumab did NOT require us to shield.
Taking prednisolone above 20mg and / or having a flare or having flared in the last 3 months DOES put us in the shielding group

Therefore - it is greater risk to us covid wise to be flaring or on steroids than taking the meds.
So, the meds are better than the alternative covid wise.
Unfortunately I've been flaring the whole time and still am despite the meds so should have shielded but didn't.
However the official guidance did definitely put taking the drugs you're on in the moderate risk and not shielding.

www.rheumatology.org.uk/practice-quality/covid-19-guidance

Here is my source so you can see I'm quoting official guidance. You need to select the "how should I determine the level of risk to my patients " tab and click on the risk stratification link

Thank you, I think I did see something like this at the time but different places were saying different things and I got a letter from my rheum dept advising shielding. I do feel better about things now so thank you

No worries. I mean obviously do what you feel comfortable with, and what your doctor's are saying. If you want to shield no one is going to tell you not to. And I'm certainly not telling you not to do what you've been told.

I'm just showing you the info etc and explaining why I'm not / why I'm not really worried to hopefully put you at some ease!

I’m on immunosuppressants, very vulnerable (autoimmune condition that affects my ability to use my muscles to breathe) and I got COVID. This was in the beginning when no one knew what it would be like and my doctor was recommending that I write out medical instructions, like how much medical intervention I wanted if the very worst was to happen.

As it turned out, I came through with amu permanent damage or need for breathing help. And not only did I, but so did several other people with my condition, so much so that she wrote a paper about our cases and published it, ha. They assumed we’d all end up being intubated or something but really only one gentleman ended up in that situation, and unfortunately, he had the mitigating factor of being morbidly obese (I’m using that in the medical terminology, not as a value judgment or anything of the sort).

So it really seems that even if you have autoimmune conditions, even if you’re in immune suppressants, even if you have an immune system that could be knocked down by a feather... my doctor, who has nothing but patients on immunosuppressants, believes age and weight have turned out to be much bigger determinants of how COVID will affect you.

@RightYesButNo

I’m on immunosuppressants, very vulnerable (autoimmune condition that affects my ability to use my muscles to breathe) and I got COVID. This was in the beginning when no one knew what it would be like and my doctor was recommending that I write out medical instructions, like how much medical intervention I wanted if the very worst was to happen.

As it turned out, I came through with amu permanent damage or need for breathing help. And not only did I, but so did several other people with my condition, so much so that she wrote a paper about our cases and published it, ha. They assumed we’d all end up being intubated or something but really only one gentleman ended up in that situation, and unfortunately, he had the mitigating factor of being morbidly obese (I’m using that in the medical terminology, not as a value judgment or anything of the sort).

So it really seems that even if you have autoimmune conditions, even if you’re in immune suppressants, even if you have an immune system that could be knocked down by a feather... my doctor, who has nothing but patients on immunosuppressants, believes age and weight have turned out to be much bigger determinants of how COVID will affect you.

Good to know it's not just our specialty saying that - and I'm glad you were alright with it !

The previous poster is far more qualified to comment than me but I have read that there is data from (I think people with donated kidneys) that they actually all fared well when infected. My lay interpretation was it’s almost as though the suppressed immunity is a benefit over a healthy person whose immune system over reacts. I think it’s the overreaction not under that is more dangerous.

I’m not qualified just my lay interpretation.

Ps I also have a relative with autoimmune issue. She sailed through Covid was v mild.

@Oaktree55

The previous poster is far more qualified to comment than me but I have read that there is data from (I think people with donated kidneys) that they actually all fared well when infected. My lay interpretation was it’s almost as though the suppressed immunity is a benefit over a healthy person whose immune system over reacts. I think it’s the overreaction not under that is more dangerous.

I’m not qualified just my lay interpretation.

That is what I've heard from my doctors when I've asked about it.

@Oaktree55 thats very interesting thank you. I am feeling a bit calmer about it all thanks everyone

@OpheliasCrayon Yes, to be honest, my doctor was quite a bit shocked at the time, because she’s in charge of the unit that handles all the neuro-muscular problems, so even things like MS. They were prepping and expecting it to be a horrific time in their unit. But it was... not. The only people they had in the unit were a few that had flares of their disease from the stress, understandable, and just needed their normal flare treatment to boost them up - not ventilation, except the one chap, and not life or death. She said the doctors were surprised, but obviously in a good way.

I still am a huge proponent of shielding, though - I had some bad nights, an echoing cough that scared even my DH, and I damaged a rib coughing that much. It would have been better not to have gotten it. But none of it put me in serious danger. It was truly odd because at least four separate people on immunosuppressants did better than my friend’s husband with COVID who takes no medications, has no health conditions, but got very sick and had to be hospitalized with low oxygen, and now has lung damage.

It’s an incredibly strange disease and I suspect we’re going to discover more and more about how strange it is in the next 5-10 years, as we see the after effects.