Covid an d Pmr

[Attic]

Hi everyone, I have PMR an d have been testing positive for eleven days for Covid. Am currently on twelve an d a half mg of Pred a day.I have Kyphoscoliosis which is a Spinal Deformity which causes my lung space to be a bit compromised so am worried because have got th e most awful cough which is making me feel as if I am drowning. I can't lie flat or even laugh because when I start coughing I can't stop.

I don't want to ring Doctor unnecessarily an d wondered if anyone else had experienced this. My oxygen levels are ok, but am not getting any sleep at all because of it,

Thank you Jenny

[piglette]

I think if your lungs are compromised you should check with your doctor. Do you have an e-consult system available? That seems to work quite well.

[Attic in reply to piglette]

Thank you piglette, I will have a look x

[DorsetLady PMRGCAuk volunteer]

With your issues you do need to contact GP -or if you get no response by close of play today then ring NHS111.

[SnazzyD]

Oh dear! I don’t know why you think your case is an unnecessary reason to call for medical opinion. It is absolutely a reason to call if not your GP but 111. My 4 reasons for saying this are - You have a condition that affects your lung capacity and you say so yourself that you feel like you are drowning. Also, you are on Pred above 10mg which will be immunosuppressive. Finally you are no better after 11 days which suggests you may have a secondary bacterial infection or are at greater risk of one. Sometimes oxygen sats can be ok because you are compensating adequately, not because it’s all fine in there. However, if you start to not compensate and your sats are dropping you are then in trouble and need emergency care. Do yourself a kindness and seek some help 💐

[Oh-my in reply to SnazzyD]

The NHS site says “Individuals treated with or likely to be treated with systemic steroids for more than a month at a dose equivalent to prednisolone at 20mg or more per day for adults.” Are those they categorise as immunosuppressed. No covid vaccine for me this time around.

But all good advice.

[SnazzyD in reply to Oh-my]

Doesn’t mean someone isn’t more prone to infection, which is what I noticed in myself and plus in others when I was a nurse. 10mg is definitely not as great a risk as 20mg but the cut off I expect is quite individual. There also seems to be nothing to say what the cumulative effects are in any one individual and how long it takes for good immune function to return.

[Oh-my in reply to SnazzyD]

Good point

Only quoting NHS site as good not to worry people

[SnazzyD in reply to Oh-my]

True

[Koalajane]

like others I think you need to contact the GP or 111

[PMRpro Ambassador]

I really don't think that seeking medical advice in that case is unnecessarily!!! But it is now Friday evening in the UK - it will have to be 111 won't it! And it counts as DIB - difficulty in breathing!

Snazzy has said the rest!!!!!

[SheffieldJane]

I think you are perfectly entitled to seek medical support with your current symptoms, in fact you owe it to yourself. X

[RedRum1968]

I’ve just had exactly the same problem. Coughing for 3 weeks, really deep and chesty. Unusually I’ve been testing negative for covid but my friend who I spent the day with 48 prior to mine and her symptoms came on is testing positive. I did see a Dr yesterday and have a confirmed chest/lung infection. I’d ring 111 as it’s now the weekend, but please don’t leave it.

[AliDeJ]

This is serious! Ring 111. I was given anti virals two years ago when I was taking 5.5 mg of pred. I was sent them again this week because I'm taking Actemra and on 12.5 mg of pred. I have no lung issues. You've had it for a long time. You need help to recover. I hope that help is forthcoming and I do wish you well.

[Margaret1951]

hi, I tested positive for Covid after going the hospital for a Dexa scan 🤬🤬 end of may. I had very bad pains in shoulder, all the way down my spine absolutely terrible !! I was on 4mg preds but never upped them, had this for 5 days , Doctors told me if I had tested within 2 days they could of given me something but unsure what it was. I had to sit up asleep as my spine is bending and they think I have a couple of hairline cracks in my vertebrae but still waiting for hospital appointments. Please ring your Doctor asap like I did or 111 and they will tell you what to do as they inform Doctor and then they ring you, please don’t leave it any longer 🙏🙏

[Plains]

Do they have Paxlovid where you live. With lung issues they should have given it to you as soon as you tested positive. Try taking hot showers to help clear your lungs… I heard it helps. Hope your doctor can give you something for your cough.

[Karenjaninaz]

I also have residual kyphoscoliosis despite corrective surgeries as a child and a revision at age 60. I am on oxygen 24/7 since a flu shot 2 years ago. That’s when I became hypoxic.

Long-term steroids, cause weakening of all muscles, including the pulmonary muscles. That coupled with deconditioning from staying home to avoid covid, the lack of energy and fatigue we all feel got me in this pickle.

Last year my husband brought home Covid from a 100th Birthday celebration. I immediately notified my primary doc; they prescribed Paxlovid for us both but my husband became infectious and I got it from him. I then received monoclonal antibodies but I really didn’t feel well for 2 weeks after. I think I maybe upped the pred for 4 days. Never had a lung issue. No phlegm but a an occasional cough.

I’m sending you a message as well on chat.

[Hunter134]

I had covid in April and didn't get any symptoms but the cough.It was really bad.Kept me up for at least 6 weeks.Finally a lot better but it worsened my mild ashma.Good luck!

[Attic]

Hi Ladies thank you all for your concern. I managed to contact th e Doctor who doesn't seem that concerned and told me to ring back in 2 weeks to be seen if the cough is no better, which it isn't yet. The wheezing is quite bad and I don't know how to describe it but when I lay down it sounds like someone is breathing in my chest if that makes sens e. Also, no sleep because of coughing. Will get there in the end hopefully, ha ha. Jenny x