Hello all, I've been left with breathing difficulties from covid19. However, I have been recovering well, able to do physical tasks up until last week. I suddenly became breathless again and experiencing pain on my shoulder blade and lower back. I don't know what conditions are causing my returning pains and breathlessness so any info or advice will be helpful thank you.
Uncertainty: Hello all, I've been left with... - PMRGCAuk
Uncertainty
Written by
briantucker
To view profiles and participate in discussions please or .
21 Replies
•
I am so glad that you have come through Covid 19 safely. I am not surprised that you are still so symptomatic. Everything I read seems to suggest that this virus takes a lot of getting over. Additionally you were just starting with PMR when it struck ( Feb this year?). You have been brought down to 10 mgs quite quickly from 40 mgs in big increments. My guess is that you have over done things and this has caused a flare up of symptoms. I expect that your doctor will want to run a number of tests for the symptoms you are presenting with now. Hopefully it is no more than needing proper rehabilitation for what you’ve been through and real rest and recuperation. Your doctors may want to consider a higher dose of Pred too. If I am right that it was February this year, 15 mgs may support you better. Good luck and take great care. Tapering in future should be no more than 10% of your dose and from 10 mgs try 0.5 mgs every 4 weeks.
Hi, we can't advise on covid 19 you need to be talking to your Dr.
Regarding the speed and lenght of PMR refuction. Yes men. Sometimes get an easier ride for some reason by the median lenght of time for PMR on pred is 5.9yrs and the least 12 to 18mths..so don't rush.
The new sick day rules guidelines are being drawn up for covid 19 and pred. But from what I remember it double dose which is taken morning and afternoon. That said I need to check.
But you need to ring 111 if you are breathless. Covid is a condition that often has two parts from what I have read...you feel better then worse.
Follow this and read the booklet being drafted.
PMRproAmbassador
A bit more information on the time scales would be useful.
However - work in Austria has shown that Covid-19 is leaving severe lung damage even in young and previously healthy patients. Their comment was that seeing the follow-up CT scans at 6 weeks in a set of scuba divers in their 40s was a shock - and the effects they were seeing were the sort of thing you would expect the patients to require life-long monitoring under other circumstances. Obviously this may not be the case in Covid-19 but we cannot predict what will happen nor are there that many patients to say what common recovery exeriences are.
At a guess you have been overdoing it. Shoulder blade region pain can result from a lot of things - including cardiac effects, also an area that CV can affect. I really think you need to contact your doctor and sooner rather than later and before messing about with your pred dose.
Since I had my Covid like illness in early March I have had mild relapses every 2-3 weeks, as has my 21 year old daughter and 83 year on father-in-law. Breathlessness, fatigue and muscle aches seem to feature. It is a pattern that is featuring more and more now with Covid and our GP has noticed it. Worth getting checked out to rule out other things though.
Do they ever test for live virus when it happens?
I didn’t think I was eligible for a test, but it looks as though I could because of having father-in-law in house. However, our symptoms are not what it says to qualify, such as high temp and new continuous cough, all that’s passed weeks ago. We’d have to get it by post and wait for the symptoms to come back I suppose but are no postal tests available right now. My neighbour (key worker) did the 2 hour round trip to a testing centre but was negative after her breathlessness one night.
in reply to SnazzyD
I have been doing the covid19 Zoe app tracker more or less every day. After a few eye nose and throat symptoms they sent me an email to say I could have a test. They have teamed up with NHS and I think trying to not only collect data but will share as part of the tracker. I haven't been able to get a home test yet but if you can go out, you may get an opportunity that way bu filling the app for a week. And each member of the house hold can have a profile. New symptoms appearing all the time. Perhaps will get you a test quicker...every little helps.
Help slow the spread of #COVID19 and identify at risk cases sooner by self-reporting your symptoms daily, even if you feel well 🙏. Download the app covid.joinzoe.com/
SnazzyD in reply to
Is that the one with the C logo in pinkish and blues? If so I’ve been doing that as soon as it came out. I do one for Grampa as well and my daughter has her own.
I was wondering in view of them learning about Covid-19 - does it resurge for a time? If so, is there enough virus to infect others?
Of the handful of cases I’ve read about with worse symptoms than me that have made mainstream press, they tested negative.
As long as that applies ...
in reply to PMRpro
It resurges in China, in whuan didn't it. Several reports of people recovered left hospital and then retested positive of the virus 2 or 3 weeks later...if thats resurgence.
Hello-This ia my first posting to the site and I am SO glad to have found you. Have lots of questions, but for now share an observation. I understand that GCA and other to immune disorders can be associated with a genetic predisposition that is triggered by an infection. Mine appears to have been triggered by bronchitis in January. Because the labs were done right away, the doctors started looking for which disease it might be, and and also started me on 40 mg predisone.Because the rheumatologist (whom I see for osteroporisis of many tears) felt so convinced that it was GCA that he said he did not need to do a temporal artery biopsy. He also said the biopsy wouldnt make any difference to his treatment. (He's been in practice for 45 years and coordinates with my internal medicine doctor.) Those first days on 40 mg were such a relief! No headaches, no exhaustion, and I felt I got my brain back.
After 6 weeks on 40 , mg he took me down to 30 -- and the prednisone honey moon is over. Headaches-not as bad, but still coming back, fatigue is back, and I feel like I am in menopause- at 77. o fever- just sweating with no exertion - and I didn't usually even perspire when I was young and physically very active. Only my face would get red. This sweating thing is a whole new experience. I need to learn more from you all about how this comes and goes.
If any of you watch the Chris Cuomo show on CNN, you'll know how he shared his experience with Covid-19 and what happened= and how sick he got - when he thought he was better. Now we are learning that many people, after getting better at the end of 2 weeks seem to have a relapse or something that is worse than the original disease.
Because doctors are describing some of the organs and blood vessel s involved, including big and some of the emotional effects, I wondered if the covid was triggering GCA - or arteries of other arteries,
My rheumatologist hopes to taper me off predisone, and switch to a biologic infusion of Actemra. A list of medications was recently published naming some unexpected drugs that help covid symptoms. The last one on the list is...Actemra.
I know we may be morse suscptible to infections and harder to treat for Covid. I'm wondering if thoseof you on this site who have experienced both covid and GCA have heard any doctors mention the autoimmune connection and treated you for it with prednisone or Actemra while experiencing covid-19?
Your rheumy should not be looking to wean you off pred and then start Actemra. It is used by starting while the patient is on enough pred to manage the symptoms and is given while reducing the dose of pred - it is effectively a steroid sparer with about half of patients managing to discontinue pred altogether. The rest require a low dose. There are 3 different mechanisms that cause the inflammation and Actemra only tackles one of them (IL-6) - if you are someone with the others as well, you still need pred. It says that very clearly in the original study documentation. Actemra ALONE is neither approved nor adequate to ensure management of GCA inflammation until relatively late it in the eidsode.
I don't quite understand what you are getting at but I don't think it is really an autoimmune connection - in Covid-19 it is something called a cytokine storm:
Not what you're looking for?
You may also like...
Uncertainty.
the left of my head, also in my left ear and slight tingling going up from this. My eyes have...
Uncertainty over A&E advice
recently & six days in, I started with unrelenting head pain & temporary vision loss, so I...
Still very breathless.
everyone
Feeling very worried as the breathlessness I was experiencing walking upstairs seems to be...
Pmr and heart problems
lucky to have been in the right place at the right time.
Still struggling with the lower doses of...
Advice before doctors appointment - Monday
February)
She is also breathless when she walks anywhere. Both conditions have been noticeable for...
Can GCA lead to PMR and what are the symptoms?
Increasing pred after a flare
Now I know why I am feeling so Ill.
Sooooo tired...sleeplessness...adrenals?...add-ons...
