Still in hospital following Wedding Trip/Hospital... - PMRGCAuk

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Still in hospital following Wedding Trip/Hospital now 12 days …Questions

KerryIreland profile image
8 Replies

The good news is they haven’t found anything wrong after MRI, CT Scan and constant monitoring and I gradually felt better. I’m still in hospital but on Friday afternoon the cardio Drs said although the CT report looked good he they were waiting for the final report from the rhreumathologist …and there was no one in that dept until Monday! My question is regarding pred. I went from “almost 1mg” to 3mg two weeks before my USA trip and was still on 3 when I arrived in hospital 4.5 weeks later. They immediately put me up to 10mg. If I ago home tomorrow I’ll have been on 10mg for 13 days. Is that too long to drop to 5mg? (They might tell me but I’d like the advice of people with experience!).

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KerryIreland profile image
KerryIreland
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SnazzyD profile image
SnazzyD

Perhaps try it if it’s suggested by your medics? If it knocks you sideways, you know you need to increase and bit a slowly go down. Your adrenal may or may not be affected by going up to 10mg but we’re all different. You’ll soon know. Just out of interest. Did they check for clots? A similar thing with BP, happened to my sister after a flight to the US. All clear on observation but she never felt quite right afterwards. Nothing major just a bit not the same. For her it developed into fatigue and feeling vaguely but not obviously, a bit puffed out. Cut a long story short it was found she had a number of tiny clots in the arteries in her lungs, thought to be from the flight over a year previously. A bigger clot would have given the classic acute symptoms but these were many and very small. They thought it to be autoimmune by nature and triggered by the flight because after that she developed other autoimmune issues.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

Sounds a bit like the microclotting seen with Covid maybe?

tctmd.com/news/microclots-s...

KerryIreland profile image
KerryIreland in reply to SnazzyD

Thanks for these thoughts. I think the MRI was on my head (I’d told them my head felt “muzzy” not a headache ). The CT Scan was on my heart, they slowed it down and used a dye). Would clots have showed up? I feel more or less normal now. The first Dr. I saw said it could be lots of things…and he included a virus)

SnazzyD profile image
SnazzyD in reply to KerryIreland

It certainly could be lots of things. No those things would not show up clots but the fact you are feeling ok is good.

PMRpro profile image
PMRproAmbassador

Only one way to find out! When I was started on pred it was for a 6 week course, 15/10/5 for 2 weeks each so 10mg to 5mg is a perfectly reasonable drop to try.

KerryIreland profile image
KerryIreland in reply to PMRpro

Thanks….that’s what I’d like to try.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Should be okay -but if you feel tentative you could go to. 7.5mg for a few days first, then to 5mg.

KerryIreland profile image
KerryIreland in reply to DorsetLady

Thanks.

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