Prednisolone and Covid 19

[jaycee444]

Be interesting to know if anyone who is one Prednisolone has had Covid 19 and how it has affected the outcome.

[SnazzyD]

Hmm, how is anyone going to know how the Pred affected the outcome separated from all the other physical factors in a person, not to mention dose variations? Seems like there may be some genetic factors too.

[SheffieldJane]

Having an autoimmune disease will be a factor too. I guess information will come out in the end.

[PMRpro Ambassador]

One rheumatologist said there have been surprisingly few rheumatology patients. One assumes because we are being good and shielding.

I think it is very unlikely there will be much in the way of meaningful figures. You can't have controls after all - we are all on pred at some stage or other,

[Whitner]

Jaycee I just read an article sent to me by my sister in law regarding protocols suggested by a hospital in Norfolk, VA that suggests using Methylprednisolone among other things in treating Covid-19. I have wondered several times why it or prednisone hasn't been used. Here's the article:

evms.edu/media/evms_public/...

It makes sense to me since prednisone quiets the body's overactive immune reaction and that's what most think happens in the worst Covid-19 cases.

[DD25 in reply to Whitner]

I always supplement with Vitamin C, zinc and Vitamin D high dosage plus a general multivitamin so it’s good to know it may have helped. My daughter is on Melatonin and was asymptotic so maybe that has helped her too.

[Hidden in reply to DD25]

Glad you stuck maybe in there 😉

[Hidden]

It was used early on in China and they found it made things worse. Since then it has had mixed results as reported in the lancet. But that is in otherwise healthy people. It has been discussed a few times on here. There is research ongoing looking at low dose treatment early in infection Vs higher doses later. There is animal and human research ongoing. If you Google prednisolone and covid there are lots of articles and research proposals.thrre could well be some People who are on pred may have had mild cases, but as in the UK up to now you had to be admitted to hospital to get tested then that isn't possible here....yet. I have been doing the covid19 app daily and have been offered a test based on some symptoms I have reported.But so far can't get a test. I feel ok now and may never know if I had it unless a workable antibody test designed and applied.

There was a discussion about the magician dynamo that has an ai condition and is probably on mxt. He had covid and has recovered. Until all the info and research is at least partially done then the overall issues and the medical history beyond pred will be clearer. For example, people just on pred under 20mg dose may be less at risk of being severely ill than people on 5mg with hypertension or high BMI. In fact if 250,000 people can die, and some of those are otherwise young and healthy, then I really don't think it's worth over analysing the situation. Isolate, wash hands, don't touch faces etc etc is the main thing to do. I.e. try not to get it in the first place.

[Rose54 in reply to Hidden]

Hi

We are on the testing for the app for a trial and if we hae any symptons will be able to get a test done thay drop I to your door .I understand once it is Ruled out to rest of UK it will be the same .

[Hidden in reply to Rose54]

Hi. Have you tried booking a home test? I have been at it a week now. Let me know if you find out what time they circulate the times they put new test requests up.

[Rose54 in reply to Hidden]

Not personally but I have heard of several who have and the number of people here who have been diagnosed is rising daily .

I was given to understand that as this is a trial its I O W only for now so although you can download app it wont work yet else where .

But I may be wrong about this

[Hidden in reply to Rose54]

It's a different app we are talking about I think. You are talking tracker, I am Zoe covid 19 but they are putting the data together so have agreed people who show certain symptoms can have tests and just book as though essential worker.

[Jennykk in reply to Hidden]

I reported symptoms to the app and had an email the next day regarding a test. On reading further the test was only if you were a key worker. Symptoms didn't last. phew.

[Hidden in reply to Jennykk]

The email I got said the online form would say for essential/key workers but the NHS had agreed to allow referred people from covid19 to take a test so just apply as if you were a key worker. I took a few days thinking about it as to be honest if I had symptoms that are covid related I do feel better than I did so I thought more important that key workers got the available tests. Then I thought hell why not....but can't get on earlier for a home test kit. I think as well they are probably interested in symptoms shown by people who have been essentially isolated for weeks too!?

[Jennykk in reply to Hidden]

ahhhhh. must read again! Thanks

[Rose54 in reply to Hidden]

Hi

Just realized may be talking about different app I mean the contract tracing app that is being trailed here at present

[Hidden in reply to Rose54]

Snap!

[Rose54 in reply to Hidden]

I blame Preds

Well I am signing off now as need to get myself out of this chair and make a start on the day .

Son going shopping to day its like getting a home delivery never know what he's going to supplement .

But its his turn to cook tonight Sweet potato and courgette curry Have a good day

[Hidden in reply to Rose54]

You too rose.

[DD25]

Hi, I’ve had Covid-19, untested but confirmed by 2GPs and 111. I’m on 10mg of Pred for PMR and have been on Pred since last July, I’m 51yrs old and I have an underlying lung issue. I got it from my husband who had skied in Austria at the beginning of March, in one of the resorts that they now know was a hotspot, but covered it up. One of the party, a GP, tested positive for Covid on return from Austria, 3 of the 4 of them had full blown standard symptoms, one has also been tested for antibodies which came back positive.

My experience was that I was bed bound with Covid for two weeks initially. I started with non standard symptoms of itchy eyes, acute stomach pain, diarrhoea, strong metallic taste in my mouth and headaches. Within the first week I then developed a fever and a cough and acute, and overwhelming tiredness. I did feel really poorly couldn’t eat, couldn’t get out of bed and I was very stiff, had to walk slowly and muscle pain increased, but I was nowhere near needing hospital treatment. At the end of the two weeks I felt wiped out but ok. The first weekend after I thought I was better I developed a UTI, which I needed antibiotics for to clear. I then spent the next week very tired I had to go out for food and to do a couple of other errands and each time I got home I felt like I had been set back and felt slightly ill again. At the weekend I then developed a sinus infection and by the Monday I had a fever, the metallic taste had returned and I had strong chest pain. By Good Friday I couldn’t speak more than four words without being completely breathless and my chest was very tight, I had pain in my lung and heart area. I emailed our docs who couldn’t see me, to let them know. I refused to go to hospital because having dealt with my lung problem since 2013 I was relatively calm, my husband wasn’t! On Easter Monday I had a telephone consult with my GP who gave me 48hrs for my breathing to get better or go to hospital. Fortunately it did get better.

I had other symptoms like your whole body felt like it was shaking on the inside, constant pain above my heart region and pains in my lungs. Two weeks after the ‘second’ bout started I was able to get out of bed and sit in a chair and not do very much, this continued for a further week. On the Friday I developed very strong chest pains and more breathlessness and my GP sent me to a Covid clinic where I was checked over and given the all clear to stay at home and recuperate with the note that it could take up to 6months for my lungs to get better, I still get pains daily. Importantly, they also confirmed to me that from their experience people on Pred. Don’t necessarily get Covid-19 worse, the problem is that we can’t shake off the virus. This is really not uncommon but is not well reported. The Versus Arthritis website also now states this.

I am now 2 weeks past the second bout and am still experiencing pain and breathlessness sporadically. My PMR was during all of this quite acute when in the midst of being really ill but has lessened as I got better. My right arm muscle is a great indicator for me and that has not settled but is manageable.

I only took paracetamol whilst ill, I didn’t want to risk ibuprofen for PMR pains as it can have complications for Covid-19.

Sorry it’s so long but I hope this helps!

[Lochy in reply to DD25]

Wow, sounds like you’ve had a tough time but you sound remarkably calm after everything you’ve been through. Everyone’s symptoms seem to be different so very hard to know if any of us will suffer more than anyone else.

Take care and hope you continue to recover.

[DD25 in reply to Lochy]

Thank you.

I feel I’ve been lucky compared to so many others. It’s only with hindsight, after having Sats tested, after the worst , I realised I probably would have failed that and been admitted on Good Friday but my decision was right for me and I can’t worry about that as I got through it in my own way.

I also feel lucky that the worry of getting it is over, which if I’m honest was almost worse, not knowing what would happen with my lungs.

Take good care of yourself too.

[Rose54 in reply to DD25]

Thank you for sharing my Son had mostly the same symptoms as you did

hope your recovery continues .

Best Wishes

[Hidden in reply to DD25]

Thank you for describing the symptoms in detail, it really helps. I had a few different symptoms last week and I do feel better now...not perfect but better and am hoping it was just hayfever and a coincidence re other things. I think it was the eye issues, headache, blocked nose, fever/chills with low temp (?) And I did have tummy issues but that is not unusual for me that tipped me into them saying I could have the test. Will be too late soon.

I hope you feel better, paracetamol will help the non PMR pain. The ibuprofen issue was debunked a bit but to be honest I always think for fever pains paracetamol is better. 🌻

[Constance13 in reply to DD25]

All I can say is "I wish I hadn't read this".☹️

You poor thing! And sometimes I moan about my piddling illnesses (in comparison)!?!

Keep struggling - and the best of luck.

Constance 💐🍀🍀🍀

[DD25 in reply to Constance13]

Oh no please don’t feel like that, I just wanted to give an overview that it did stay on for a prolonged period of time but it’s not impossible to beat for those on Pred.

We all have our aches and pains and no ones is better or worse- they are all rubbish!

[Whitner in reply to DD25]

Very interesting to hear your story and so happy to hear you were able to stay at home and that you are on the mend!❤️

[TheMoaningViolet in reply to DD25]

Dear DD25, thank you so much for sharing your experience, it sounds like quite an ordeal, and I hope you continue to get better.

I was wondering whether at any point your Prednisolone dose was adjusted as is recommended in case of a serious illness and if not why not?

[DD25 in reply to TheMoaningViolet]

I spoke with my GP about upping the Pred. on Easter Monday, as I felt the aches and pains were becoming less manageable and if that was better, then I might feel better in myself. I was advised not to do this as for every 1mg of Pred you go up the worse the doctors feel it can affect you in terms of the Covid staying longer with you. That is what she said but I have seen nothing else about this. I didn’t go up and things are settling but not yet back to pre Covid where I had been almost pain free for 3 weeks. FYI my last change of tablets before that was down from 11mg of Pred in February.

[TheMoaningViolet in reply to DD25]

Thank you for explaining. Vx

[TheMoaningViolet in reply to DD25]

I have just seen an article on BBC news you may find interesting. I will message you. Vx

[Hidden in reply to TheMoaningViolet]

There aren't many cases when pred would be adjusted from what I have read but happy to be corrected. Dmards are a different thing. Yes we are advised to stop if there is an infection. Where did you read they are reducing pred for infection? I would really be interested to read it. Thanks.

[TheMoaningViolet in reply to Hidden]

I meant increasing it, not reducing it. I have only heard of one person with PMR who had a diagnosed coronavirus experience before; he was admitted to hospital (a normal ward, not intensive care) and his Prednisolone was doubled for a week (he was in 6mg and went to 12mg). Thankfully he recovered.

[Hidden in reply to TheMoaningViolet]

Interesting. Which cvirus was it...do you know? The SARS or MERS? If you don't, don't worry. Increasing sort of makes sense but I never do it for infections like colds or flu. But I did stop my dmard....🤢🥵

[TheMoaningViolet in reply to Hidden]

I assumed it was SARS-CoV-2 as this was just a couple of weeks ago, he lives in the a the UK and the discussion was in the context of the current pandemic. Admittedly, he didn't specify the virus.

[Hidden in reply to TheMoaningViolet]

Interesting. It may be the low dose approach early in the onset that was being used that I think I read in the lancet last week. Doubling a PMR dose isn't much in the grand scheme of things so would be a low dose approach. It would be interesting to know the rationale in his case, though I doubt they explained properly or that he would have heard it in the circumstances. Cheers 👍🌻

[PMRpro Ambassador in reply to Hidden]

I imagine sick-day doses for adrenal cover.

[Longtimer in reply to Hidden]

Have just filled in the survey which PMRpro posted, it says to double the dosage if we get the virus and to take half dose am....next half pm....

[nuigini in reply to Longtimer]

I was just wondering the same thing.

[Pollynolongerinagony in reply to DD25]

YOU COMPLETE STAR!!!! THANK YOU SO VERY VERY MUCH FOR TAKING THE TIME TO EDUCATE US ALL ON YOUR EXPERIENCE, AS FEAR OF THE UNKNOWN IS IN ITSELF A TERRIBLE BURDEN... CV19 IS TAILOR MADE TO ATTACK EACH INDIVIDUAL IN ITS OWN INDIVIDUAL WAY. YOU ARE TRULY AMAZING. WELL DONE FOR STAYING CALM AND IN CONTROL., AND FOR BEATING CV19. YOU HAVE GIVEN ME HOPE AND I AM NOT SO AFRAID NOW. SOMEONE SHOULD BUY YOU A SUPERWOMAN VEST. THANK YOU FOR SHARING, BEST WISHES POLYNOTSOSCAREDANYMORE.

[Longtimer in reply to DD25]

Thank you for taking the time to explain to us the awful experience you have been through.

I hope you continue to improve....keep us posted how you are doing....

[nuigini in reply to DD25]

I echo what Lochy has said. You're a real trooper. Wish you all the best in your recovery.

[Elor in reply to DD25]

Thank you so much for sharing your experience, you have had such a terrible time but it is so reassuring that you have come through it with such fortitude. You are truly inspirational.

[PMRpro Ambassador]

Very interestingly, the leaflet from Leeds about which I put up a post covers pred and Covid-19 and what to do. Spoil alert: don't worry about reducing your current dose!

This is the link for the leaflet

leedsth.nhs.uk/assets/be1c3...

but you need to go to the Vasculitis post to get the link to comment.

healthunlocked.com/vasculit...

[Hidden in reply to PMRpro]

It's interesting I got sick day rules for insulin but not pred.....although I must confess all my letters came during the letter quarantine I imposed which I handled delicately and then burned. ☺️

P.s. I am obviously finding things interesting today 🤔😁

[DD25 in reply to PMRpro]

That is a very informative read, I wish I’d known about this pre Covid-19. It’s a shame not all Pred. Patients are given this is would have been incredibly useful. Thank you.

[PMRpro Ambassador in reply to DD25]

It isn't handed out because it is still in development - I explained in my post, they are looking for feedback from patients, I assume it is to be sure it is OK for patients and clear.

[DD25 in reply to PMRpro]

Ah ok, I missed the post saying it was in development. I guess it will take a while for the feedback to come in, but is a great basis, if it is confirmed, for a leaflet to be handed out to patients.

[PMRpro Ambassador in reply to DD25]

I think it is intended to be online ...

[nuigini in reply to DD25]

They said they hoped to incorporate the appropriate feedback and have the final out in June 2020. In the meantime I printed it out and will carry on with me at all times.

[Dewdrop456]

Hello,I have had Covid 19 symptoms.It started with flashes of feeling like I had a temperature but it was never very high.Then I developed a persistent cough and extreme tiredness and complete lethargy.I had to stay in bed all day for several days .I didn’t have a temperature at this stage.

I didn’t have any trouble PMR wise and didn’t increase the dose of Prednisone which was 4 and 3/4 mgs.I had a metallic taste in my mouth.

DD25 has described their experience in better detail .We definitely shared very similar symptoms.I too got a second wave of pains in my lungs and further worsening breathlessness. A couple of times I got close to asking for some oxygen but decided to see how I got on and I managed without having to trouble anyone. This was at the end of March.I rested through April .Usually I’m always very busy everyday but I just didn’t have any energy to do anything.Towards the end of April I began to feel better in myself but I am still lethargic.I feel very lucky and thankful that I am nearly better and didn’t have a severe experience.

[Hidden in reply to Dewdrop456]

I think it sounds severe enough. I am glad you feel a bit better. I am sure the lethargy will go, even after flu it can hang around. Rest rest and more rest. 🌻

[Dewdrop456 in reply to Hidden]

Thank you. I have been given another week off from work.