GCA patient with Pneumonia : .Any thoughts or ex... - PMRGCAuk

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GCA patient with Pneumonia : .Any thoughts or experience dealing with this ?

Blurry62 profile image
21 Replies

I was diagnosed 10 days ago. Cough is much better but I am ridiculously weak and afraid of flaring since the immune system is so ramped up.

Negative covid test.

It's always something.

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Blurry62 profile image
Blurry62
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21 Replies
SheffieldJane profile image
SheffieldJane

Oh poor you Blurry62. Are you in the “ sick day rules” group, I can’t remember? Have a look at FAQs. You may need some extra help.

Blurry62 profile image
Blurry62 in reply to SheffieldJane

I'm not familiar with that group. I'll go look at faqs

Luciejc profile image
Luciejc

Are you on Actemra? If so you might want to check with your Dr. about stopping it. Hope you feel better soon!

Blurry62 profile image
Blurry62 in reply to Luciejc

No, not on actemra. 7 mg of prednisone only.

Thelmarina profile image
Thelmarina in reply to Blurry62

I’ve recently recovered from pneumonia - doubled Pred for five days then dropped back to normal dose. You can take an extra couple of days at double dose if you want, then couple days at 12mg, couple at 10mg then back to 7mg. Hope you feel better soon 💐

Blurry62 profile image
Blurry62 in reply to Thelmarina

So I guess you are saying this worked well for you. You recovered nicely?

Thelmarina profile image
Thelmarina in reply to Blurry62

Yes- great recovery - follow up chest x-ray clear. 😀

Blurry62 profile image
Blurry62 in reply to Thelmarina

My doctor doesn't want me to double my dose. He feels that the extra mg qnd antibiotic will have done their job. I hate fighting with doctors.

Thelmarina profile image
Thelmarina in reply to Blurry62

I was in hospital with my pneumonia and the Consultant immediately put me on double dose for five days, reducing back to my normal dose after that. This was because Pred controls the amount of cortisol we receive and you need extra in a stress situation, normally supplied by our adrenals. I don’t know why your Dr is going against received wisdom! However, give him a time limit on trying his way and be honest - adult to adult. If it works say so , if it doesn’t say that you would like to up the dosage for a short space of time. It won’t kill him or you but might make you feel better 😅.

Thelmarina profile image
Thelmarina in reply to Blurry62

Don’t do it then. You don’t need the stress and you’ll be fine. Deep breaths and r-e-l-a-x 🤗

SnazzyD profile image
SnazzyD

Indeed it is. I have got myself into a tizz a few times thinking a trauma or illness was going to light the fuse of the autoimmune bomb. I decided to try to trust it to do the right thing as I had nothing to lose and I had to learn to trust it at some point. So, every time I had/have a challenge I set out on the premise it’ll do things properly. Learning to trust a body that has gone very wrong is very hard, but I tell myself mine prob went wrong (autoimmune-wise) because I didn’t listen to it but now things are different. As I said, nothing to lose and if it doesn’t work, I’ll know soon enough and terror won’t help. So easy 😵‍💫

Hope you get a speedy recovery!

Blurry62 profile image
Blurry62 in reply to SnazzyD

You give sensible advice. I don't know that I can take it right now, but am trying. (I'm being a 👶 big baby)

SnazzyD profile image
SnazzyD in reply to Blurry62

It is hard I really appreciate that. I just want to make it clear that I don’t mean not bothering with sick day rules increases.

Blurry62 profile image
Blurry62 in reply to SnazzyD

I understand

PMRpro profile image
PMRproAmbassador

Pneumonia is a serious illness - no wonder you feel weak. You probably should discuss your pred dose - under Sick Day Rules you would take rather more pred to make up for poor adrenal function so do discuss it with your doctors.

healthunlocked.com/pmrgcauk.....

Blurry62 profile image
Blurry62 in reply to PMRpro

Ok

Skysey profile image
Skysey in reply to Blurry62

Sorry you are so unwell. Pneumonia is serious so you are naturally feeling terrible. Hope you get better soon.

Blurry62 profile image
Blurry62 in reply to Skysey

Thanks so much

Poshdog profile image
Poshdog

Feel for you. X

Blurry62 profile image
Blurry62 in reply to Poshdog

Thank you.

Blurry62 profile image
Blurry62

My doctor does not want to double my dose. He increased it by 1 mg only. Aargh

He said please do i t his way and let's touch bases next week to see how I'm getting on. So how am I getting on now???

Less coughing, no fever, slight headache and exhausted. Improving.

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