Hello all, I know this is a really worrying time for many of us so thought I’d share the positive conversation with my rheumy department this morning.
I have (another 🙄) kidney infection and my GPs also said probable coronavirus, and to get advice from rheumys.
I’m at a big London hospital where most of the rheumys have been moved onto full time coronavirus care. She said they have reported that they are seeing far less of rheumy/ immunosuppressed patients doing badly with coronavirus than expected and the vast majority of those getting very unwell are the old, overweight men with high blood pressure and/ or diabetes.
Not that this means we shouldn’t keep isolating and being VERY careful but hopefully reassuring that if we do catch it, it may not be as terrible as we maybe think.
If mine has been the virus (always hard to tell with us as some of our lupus symptoms are similar/ mask it) it hasn’t been that bad so far. I’ve felt much much worse in lupus flares...
They have doubled my hydroxy so I presume they think there is possibly some logic behind the potential benefits. And said don’t increase steroids if potentially coronavirus (as we’re normally advised to in infections) as this can have a negative impact.
Hope everyone is as well as possible xx
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Melba1
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oh blimey, Melba. You seem to be spending more time in that place than out of it this year. I hope you are at least getting paid a retainer for sharing your expertise.
Get well soonest
xxxx
PS speaking as a fat old bloke, your message is perhaps less reassuring than you hoped
Yes I think you and I are very similar. Sorry you have infection too ☹️ I seem to get one after every cyclophosphamide session.
I’m not in hospital this time though (think I confused everyone by writing ‘I’m at a big London hospital’ meaning that’s my hospital for rheumy treatment!) but rheumy said might need to be for IV if oral antibiotics still not working in next couple of days - which is looking likely as I normally need gent or teicoplanin to knock them into (temporary 🙄) submission.
Sometimes my local hospital IVs me at home which is much nicer but because they think possibly covid too, no one wants to go anywhere near me!
She seemed fairly certain it was coronavirus too even though I wasn’t convinced. Yes, she seemed to think hydroxy could be helpful and my normal rheumy contacted me before lockdown and said doubling it for a few months is a good idea.
I think there’s not enough evidence so far but it doesn’t do harm (in those of us who tolerate it) so they probably think worth a try
On the frontline of medical advances as always, Melba1! Are you in a big London hospital with multi-coloured striped flooring and Gurkhas still building away at the back end ?
Well, stats in a report from Friday reflect what's being seen on the ground...obesity in Covid cases has a much higher proportion than in flu, and 'underlying health conditions' cases come in with a lower percentage than flu...very sadly the first case of undiagnosed autoimmunity was in the press today....now where did I put that research into undiagnosed lupus...time to lobby my chocolate teapot MP again, honestly, he makes Dominic Raab look like a seasoned politician
The research from China (hm) claimed 500mg HCQ is effective against Covid
Increase steroids in infections?? My rheumy was shouting at me that NO steroids should be taken during any infection??
Re-group and back to base camp asap Melba1...we need you leading from the front
Ah the increasing steroids when injured or infected etc is for those of us with non functioning adrenals. The ‘sick day’ doubling steroid rules because everyone else’s bodies automatically adjust steroid output to reflect these changes but ours obviously don’t which can lead to adrenal crisis.
Rheumy said don’t in this case though, one son is a bit traumatised by having to deal with last adrenal crisis do is watching carefully 😬
I think your rheumy might (surprisingly!) be right in general with steroids and not increasing in infections as they can mask the infection and cause more serious problems.
Ha! Dominic Raab makes me feel old, seems like a schoolboy...
You're in the very, very best hands...here's to a short stay (and not in a conference centre) 🌹🌹🌹
Yes, Dom has a slight lisp and the look of having tied his tie himself for the second time ever, very sweet....your boys would put him to shame in their maturity! xoxox
lupus status and treatment are not a huge risk according to my us doctors. My history of congenital heart condition and cebrevascular disease were more what they were concerned about. Diabetes and hypertensive patients scared my cardiologist the most. This virus needs glucose and ace2 to attack it seems. I am happy to have neither of those ailments.
My dad was told to stay on his ace2 inhibitor there are mixed thoughts on if the medicine is an issue or not but many patients with high blood pressure and on meds had complications. But there also is talk of trying ace2 inhibitors as treatment.
They really are just pulling straws still. Not enough real studies to point to what is most likely to cause severe disease or what will work best to prevent death. High d dimmers and changs in ALT are also predicative of bad disease coarse and " wet lung" complications.
My heart breaks about all this. I can not imagine the multiple long term ramifications this pandemic will create. We will have an entire world of people suffering PTSD from this. Xo
I agree my family has been home without being within six feet of others for three weeks now. I have had to leave for a weekly blood test but that is the only breach in our social distancing plan.
I must admit after my food delivery person dropped my groceries while talking the whole time on his phone that I am not that confident that avoiding infect spittle altogether is at all possible.
I am so sorry to read your post and hear you have another kidney infection and possibly corona virus too. Double whammy.
So even more of a thank you for sharing this positive information from your Rheumatologist.
I have been wondering if data will be kept on how underlying health conditions effect outcomes and lupus in particular.
There is so much information going around on social media and lots not from reliable sources.
From memory, the one I saw yesterday said that 86% of deaths have been people with pre-existing health conditions and the remaining 13% with no pre-existing conditions were over 63? Who knows if that’s right.
Anyway, enough of that. Positivity is what we need.
I am sending you all of my positive thoughts.
If you are up to, please update us.
Oh and also, what is double your Hydroxychloroquine dose?
Hi Wendy, sorry for the delay, bit of a rough week but much better now 🙂
They are fairly certain coronavirus (3 of 4 of rest of family also had typical symptoms) Totally blaming husband for going on London tube just before lockdown 😬
I think there’s even more preliminary research out recently that we’re not appearing in the very effected statistics - certainly not as much as expected, which is very reassuring.
Double hydroxy for me was to 200 twice a day. I used to be on that anyway until the new regs with the concerns over eye damage dropped that down to 200 for most of us (weight dependent obviously). Maybe it helped, but if it was the virus then it was nowhere near as severe in me as a neuroflare or kidney infection - and whilst there was some fatigue, nothing like we get in a lupus flare.
It is sooo lovely to hear from you! Have been worried about you. xx
Also reassuring to hear that you have had it and come out the other side. It's interesting to hear you'd had worse flares.
Did your husband get it? Or was he an asymptomatic carrier?
The pictures of the tubes have been frightening. Almost impossible get out without having got it.
Do you think there might be a new understanding of our health issues and fear after this?
I have been thinking that "well" people are now fearing for their health and mortality. But we have this nearly every day from becoming ill and/or a lupus diagnosis. And our fear is heightened even further at this time.
I have had 3 friends getting CV now and luckily all 3 are recovering well. They have been very unwell, but managed to cope at home.
I wish the press would cover how many are surviving this. But then if they are not testing who has got it, they cannot have correct total cases figures or have accurate figures for those recovering.
Plus I guess they want to scare people into staying at home, rather than encourage people to think they'll all survive it.
My 3 friends haven't been tested, just had the symptoms and been very unwell. Worse than the flu.
Anyway, I hope you continue to make a good recovery, and your family too.
Now we all need to know is how long immunity lasts after having it.
It’s difficult to be sure it definitely was Covid 19, especially as I seemed to escape much more lightly than drs were predicting. Although it was a week of fever and still feel breathless, but have felt much worse with flu in the past, as have the children.
Husband was achy and cough (and grumpy 🙄🤣), then one son bad tummy, high fever (but recovered quickly) at the same time as me, then a few days after, another son fever, lethargic and difficulty breathing and another son no symptoms (yet).
Yes I was wondering the same about whether it will give more widespread understanding amongst society about the uncertainty and fear many of us face all our lives? Also the isolation etc that can be normal life for lupus patients and that so many people are struggling with now. It may be something that could be in a research study and/ or a media report/ awareness raising as people may need it explicitly pointed out?
Testing is difficult to keep checking to see if ones got it. The important thing is to treat people with fever whatever the cause. The important testing will be the one to establish how many have had it and show the antibody resistance. Best wishes Kevin
That is a good question. If vaccines are effective, then you would probably make antibodies, right? But not sure about those who also have immune deficiencies.
I think the first people who will get tested for immunity in the US are the healthcare workers. After that, maybe high risk people? Ideally everyone will know status soon! I am going to try to get a test since I will be an asset if I have immunity and can help in many ways.
Do hope melba you are feeling much better. Can't imagine covid and a kidney infection at the same time. Awful and must make you feel so poorly. Thanks for sharing what your Rheumy dept said, very helpful and keeping the positivity going.
Just to add to the interesting conversation you've been having. A report in today's Times of a 99 year old surviving covid said that she'd had malaria twice in her life and recovered from that!.
Just been wondering if she'd had anti- malarial treatment whether it stood her in good stead to survive covid? Or she's got a very strong immune system?.
Keep us posted melba how your getting on and be better soon. Thinking of you Xx
Ah thanks for the good wishes misty and that’s nice to hear some positive stories - tough 99 year old 🙂
I think any malaria treatment she’d have had would be well out of her system by now (unless she’s recently travelled to a malarial area which might be unlikely at her age unless she’s very adventurous - or lives in a malarial country).
I also had malaria when I was younger (in Africa) - very unpleasant and they gave me a very dodgy ‘cure’ that was banned and gave me awful nightmares 😬
Well I’m not wholly convinced it was definitely covid we’ve had but one son and I still struggling with coughing and breathless (like we’ve inhaled smoke) so probably I guess.
Are you ok misty? I saw your bloods had showed something and you were finally getting immunosuppressants? Hope that hasn’t been affected by this crisis.
It looks like the 99 year old had two bouts thru her life not recently!. She was the Special forces police force so a tough lady. Took her three weeks in hospital to be cured though and she's the second 99 year old to come thru it!. Do hope your feeling better today and your son . What a worry it all is!.
They found a new inflammatory marker for me, raised ferritin so put me back on MTX after a nine year break. The virus has affected my dose and blood tests as been on it three months and they've obviously delayed them for three months now!. Hope nothing develops. It's helping but I think dose would have gone up as getting reaction to pneumonia jab I've just had!. Always something isn't there?. Thanks so much for asking!. Do take care and be better soon. Xx
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Some good news for once! Ooer mrs!
