PMR & Corona Waves

[Fredddie]

Hi all,

After going back up to 10mg from 5mg due to being very poorly 4 months ago it has now been confirmed by my Doctor I had Coronavirus having had a positive result from Antibody Test.

Back at the beginning of March the fourth day into being very poorly and not suspecting it was Coronavirus at the time my doctor told me to double my dosage which I did and then after a few days began to feel a little better. I now wonder what would of happened if I hadn't increased the dosage as steroids are now helping people who have Coronavirus.

I am having waves of extreme fatigue, coughing and pains in back and front of chest. When they are gone I feel back to my usual Pred self until the next wave which comes around every 4 weeks or so.

I am speaking with my doctor tomorrow but I wondered if anyone else is going through this and has it effected their dosage. I am now on 7.5mg and seem to be managing well and plan to stay there for a while.

Thank you for reading my Post and any thoughts as always much appreciated.

Thank you.

[PMRpro Ambassador]

It seems quite common for patients to have these cyclical returns of Covid-19 symptoms - I think Snazzy has had something similar.

theguardian.com/world/2020/...

theguardian.com/world/2020/...

[Fredddie in reply to PMRpro]

Thanks for reply always helpful.

[SnazzyD]

Same with me. When I had my convid-like ilness back in early March When I was on 0.5mg, I put up my steroids up a bit when I thought it was the point when the suggested cytokine bit might kick in. I felt much better. I now get the same symptoms as you still nearly 4 months later every 2-4 weeks. The last time about 4 weeks ago, I actually didn’t have breathing problems with it for the first time. Last two days I’ve had the exhaustion, intercostal muscle spasms and throat ache this time. Same old same old. My daughter (21) is the same. This is not uncommon if the a CovidFacebook group is anything to go by.

[Fredddie in reply to SnazzyD]

Hi Snazzy, thank you so much for your reply. It sounds just like me!! What a relief to know I’m not alone - not that I wish this on anyone. Not great at social media HealthUnlocked is as far as I go. Now I know what these pains are around my ribs. Let’s hope we are on the right road. Thanks again can’t tell you how helpful your response has been.

[SnazzyD in reply to Fredddie]

Just a note - I know it is intercostal as opposed to cardiac in that it feels on the surface, I can poke the right bits and it feels like a localised knife. My disgusted had the pain mostly across the top on each side just below her collar bones.

[PMRpro Ambassador in reply to SnazzyD]

That's no way to speak about a friend/family member

[SnazzyD in reply to PMRpro]

Ooer, 😂. Trying to cook tea at the same time. Read daughter!

[PMRpro Ambassador in reply to SnazzyD]

OK - maybe should have thought that as it began with d ... Really did think about it

[SheffieldJane in reply to SnazzyD]

Was it your cooking? 😉

[SnazzyD in reply to Fredddie]

The Facebook group isn’t for the faint hearted because it is a whirlpool of fear and panic. I just skip through and make a note of timings, symptoms and look at interesting links. There are lots of people happy to dive in and reply, so I keep out unless I see someone about to do something silly like one person was going to take lots of potassium tablets because they’d heard it was good for Covid.

[PMRpro Ambassador in reply to SnazzyD]

OMG

[SheffieldJane in reply to SnazzyD]

😳

[DogAgilityObsessed in reply to SnazzyD]

I find the Facebook group quite scary and confusing. So much seems at variance with this group. Think this is where I will ask all my questions.

[nuigini in reply to SnazzyD]

I've never looked at this FB group and will avoid it based on your comments!

[SnazzyD in reply to nuigini]

Well, if you have a steady temperament and not prone to knee jerk reactions when there is one post after the other of suffering, it’s fine. If you want to see that you’re not unusual with the Covid long tail it’s fine but there are an awful lot of people who have a temp of 37.5C and a sore throat and think they will be on life support tomorrow. Some people are having a truly terrible time due to lack of knowledge and understanding from friend, family, employers and medics. Ooh, where have I heard that before? Some are also finding they are suffering from discrimination such as one lady was the only person in her workplace to have had an illness and been tested positive and she was not allowed in the canteen so ate her lunch in the car. Can’t remember if it was the UK or US. It is quite an education into the differing health systems and also differing treatment courses people have taken. All sorts of remedies going round, people wanting a quick fix and definite answers to the unknown which is what most struggle with. And oh, so many of the same questions over and over and over because being Facebook there is no search option.

[Fredddie]

My brain feels scrambled so I keep things simple. However I don’t know how I would have coped without this forum everyone has been so kind and helpful whenever I’ve needed support not to mention the knowledge and experience. Love your dog photo. My Freddie (Springer Spaniel) has been the best tonic in the world)🐶😊

[SnazzyD in reply to Fredddie]

The brain fog is widely reported with Covid as well as PMR/GCA so who knows what is what now.

[Constance13 in reply to SnazzyD]

Did you show your 'mistake' to your daughter??😂

[Telian]

I think I had it before Christmas Freddie - I certainly had a cough like no other. Increased my steroids for another reason at the time - it was before we knew about Covid - either coincidence or it was ready to go but felt better.

My Rheumie didn’t say much but put it in her letter to my GP.

Just been puzzling this week why I feel so lethargic, throatie and pains in back for no apparent reason. Supposed to be reducing but body says no.

[Constance13 in reply to Telian]

Is it possible to be tested for the virus Terrie? You'd know if you've had it then and it would also confirm you are now "safe" (??) in the future.

[Fredddie in reply to Constance13]

Hi

I had my report back from antibody positive test and it states you can not assume you are safe because you have the antibodies.

[Constance13 in reply to Fredddie]

Oh dear! Another hope dashed!😏

[Telian in reply to Fredddie]

Interesting.......I suppose with a new illness they’re not going to know as much as they eventually will do!

[PMRpro Ambassador in reply to Constance13]

We don't know a) does it confer immunity and b) how long it will last even if it does - that will take time to see if there are reinfections. It doesn't really even tell you if you had it - apparently you need a strong enough infection to even create the antibodies and some have had it but have no antibodies. It will show (maybe) about how many did get infected - and it is going to be WAY more than is obvious.

[Fredddie in reply to Telian]

Hi Telian, thanks for reply. I’m obviously no expert but I would stick with dosage until this wave goes away. I’ve learnt to listen to my body like you and don’t want to put more pressure on myself than necessary. I became poorly end of feb and have had several waves which i now recognise and differentiate between covid and PMR. Wishing you a safe speedy recovery.

[artfingers]

That is interesting and very telling. My son has had revolving symptoms similar to yours. Now I am convinced I need to have him tested. Even if there are false results, I'll feel better since his doctor has had no answers to date (she doesn't do either Covid test or antibody test and it is a bit hard to get them in the states though we can if we drive an hour-ish. Slowly we are getting more testing sites, at least in Michigan. Thanks for the post!

[PMRpro Ambassador in reply to artfingers]

I'm not sure they have reliably found virus in patients with the return of symptoms. Some of the "relapses" they think may be due to dead virus being detected in the cells from the lungs as they die and are coughed up into the throat. Still so much to learn about this very cleaver virus ...

[GOOD_GRIEF in reply to PMRpro]

What is now being reported with some frequency is that some individuals are still shedding live virus weeks and months after "recovery", and that there is not necessarily a correlation between the severity of the symptoms experienced and the virus shed. Not all of these reports have been peer reviewed as yet, but I am reporting what I have seen published from reliable media sources.

Those with confirmed or suspected cases need to be extra vigilant about social distancing, mask wearing, disinfection etc. to prevent spreading the virus to others in their households and elsewhere.

[PMRpro Ambassador in reply to GOOD_GRIEF]

Everybody does - but the fact that you can have it without symptoms seems to be a difficult concept for some to grasp ...

[Fredddie in reply to artfingers]

Your very welcome and good luck.

[nuigini]

Sorry to hear you have been struck with Covid, but as someone living in fear of the virus I'm pleased to hear you are managing, albeit with some ups and downs.

Your post has brought out a lot of information of great interest and benefit.

Wishing you all the best in the months to come.

[Fredddie]

Thank you for your kind words.

[Michdonn]

Freddie, did not have the virus, but each time I had any little stomach bug or cold my PMR would flare! Worst flare was at 7mg and had to increase to 30mg to get relief. My advice is simple listen to your body always get the inflammation under control, do not decrease your dosage if you have any PMR pain. Good luck with the rest of your PMR journey. 🙂

[Snowy12]

Hi all, I had covid mid March really poorly for 5 weeks. Attended A&E on 2 occasions they decided I would be better off at home the second time my GP thought I had a blood clot in my lung but turned out to be pleurisy I was in oramorph for 3 weeks terrible pain. I got down to 7mg pred from 60 and when I felt better after covid decided to drop to 6mg. Big mistake I had return of full GCA symptoms Headache scalp sensitivity sleeping all day and night. So now back up to 40mg gutted! O should have known better live and learn I suppose silly me ☹️