2 questions : I haven't recd a notice fr the Health... - PMRGCAuk

PMRGCAuk

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2 questions

bonmaine profile image
9 Replies

I haven't recd a notice fr the Health Unhlocked PMR forum in months. I see I am still registered tho and my preferences recorded. Any idea why? Has something changed?

Opps Guess its 3 questions. LOL In the dept. of stressors that can lead to flares, I learned last summer that death of a loved one is a biggy. Now can any one tell me if 5 consecutive days of high intensity stereotactic radiation treatments for lung cancer can cause flare-like symptoms with extreme sporadic malaise and fever up to 100 degrees F ? Missed you guys. Hope everyone is hanging in. So nice to have you here. :) Bonnie

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bonmaine
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

hi,

First question - have a look at this - work your way through the stages and hopefully should sort things, if not then please contact HU.

healthunlocked.com/pmrgcauk...

Hope the treatments went well, and yes they may well have caused a flare, but depending what Pred dose you are on, they may well have put your adrenals under duress. As you were at low doses when you last posted , guess that’s the likely cause.

Suggest you discuss with your doctor and request a morning cortisol test to check.

bonmaine profile image
bonmaine in reply toDorsetLady

Thank you will do. And yes, I have been stuck at 2 mgs for at least 8 mos , if I remember correctly. Been one stressor after the other. TY Ill keep on truckin' .

PMRpro profile image
PMRproAmbassador

Whether it is a flare of PMR or not - 5 days of radiation therapy of any variety is likely to cause fatigue and UCLA do admit that "slight fatigue" is the most common side effect of SBRT.

The Mayo on the other hand seem far more realistic:

"Extreme tiredness can occur for the first few days after SBRT."

mayoclinic.org/tests-proced....

Cleveland also admit extreme fatigue is possible.

I assume you have reported the fever to the medical team? Radiation pneumonitis to some degree is a possible adverse effect in some cases and that may cause a fever.

Having cancer is stressful. Having any form of treatment is stressful. You don't say what dose of pred you are on nor when the LC was diagnosed - but 6 months ago you were still at a low dose so I assume not much change and the diagnosis is recent? Either way - any feeling ropey probably has a lot to do with adrenal insufficiency. And the risk of an adrenal crisis does strike me as something that should be borne in mind.

bonmaine profile image
bonmaine in reply toPMRpro

TY LC was diag in Febr 2024. Guess Ill contact rheumy. So hesitant to increase the Pred.., again.

PMRpro profile image
PMRproAmbassador in reply tobonmaine

Still all very early days - and ALL of it together is underlying that fatigue I suspect. So you may not need to go up the pred but in the great scheme of things, a bit of QOL figures pretty high on the menu I think.

Lacelady profile image
Lacelady

Bonny related to your comment about not receiving HU mail I have the same problem. However I found them in the junk mail ever since I changed my Wi Fi provider. I have to rescue them every day as I cannot find out how to stop them going to junk.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toLacelady

See this - and para b.. in particular -

healthunlocked.com/pmrgcauk...

For info - it’s a pinned post - and has been for some time… 😊

bonmaine profile image
bonmaine in reply toLacelady

TY Ill check it out.

bonmaine profile image
bonmaine in reply toLacelady

TY I'm checking but haven't found any yet. Of course its been so long ago that I may have deleted the spam folder without having paid much attn. But I will now if it doesn't improve . Appreciate yr input.

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