So I saw the new consultant who is a specialist in vasculitis today
It went well & he listened and was compassionate. He had gone throw all my notes and blood & MRI scan results.
We discussed my symptoms that led me to A&E.
CRP has gone down, PV is still high but he said it takes a little longer for it to come down
He believes that there is inflammation somewhere and his decision is to continue to reduce steroids and see if symptoms come back. We are reducing 5mg a week which Im a little worried its a bit quick He has warned me about a flare up & i have been given a number to his secretary if anything happens. He has also referred me for a Pet Scan which he says should flash out where the inflammation is. He has not changed diagnosis at this time but he is not 100% its GCA. He is also baffled about my reaction to Pred, I have fatigue, tired, sleeping 9-10hrs a night when it's meant to cause insomnia ?? My headache is back but mot as severe but Im keeping an eye on this
I started on vit D today as this is showing as deficient, its not too low but 2 points from normal which may well be the Pred affecting the metabolism of it.
I feel a little supported and hopeful that we will get to the bottom of this.
Thank you again for you support, Its kept me going during the last 6 weeks & Im very grateful to you all 💕
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Poppy1647
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By no means everyone goes manic! Pred absolutely knocks out some people - I upped my pred from 15 to 20 the other night and slept like a baby after a week or so of lying awake half the night! Going to do the same tonight ...
How far does he want you to get down before the PET scan?
Interested to know if anything shows - research suggested even 10mg is enough to suppress the results. Given how I am at 15mg at present and I have to travel by train and bus to the hospital about 70 km away ...
Wow! Thats a long way to travel, do you still have symptoms now?
Hes thinking pet scan will be in about 4 weeks or so will be down by 20mg then. Im at 45mg from today. I would have reduced it by 35mg that is if there's no flare up. He said to go back up if symptoms come back.
It is only because it is a specialist test in a region with just over half a million people and you have to go to the big central hospital. Lots of people travel almost as far for just a rheumy in the UK - and I won't even think about the USA.
Where my daughter was a paramedic in the UK she needed 45 mins on blue lights to the nearest hospital whichever direction. That was a main road. Far longer for the moors residents. When we moved here one criterion was a nearby hospital - and strokes etc are transferred by helicopter. Too many mountains in the way! I COULD walk to the hospital, about 40 mins, but there is a direct train, the hospital has its own station.
I slept soundly from 20 to 10 now down at 1 1/2 I’m not sleeping so good...plus I’m a bit off so thinking of going up to 3 or even 5 for a few days...over did it this week..(snow removal!)
Hi I was advised that I needed to be on10 mg for pet scan, it was a really rapid drop and felt horrendous but the scan was strongly positive whereas the biopsy was
negative. The hospital for the scan was not local and they rang first about the appointment and were very happy to answer my questions, hope this helps
Just got down the day before, but then had problems because the scan was postponed until the afternoon so I went from 10 mg the morning before until 4 pm the day of the scan, had to go back up to 30 mg before I got any relief
That worries me a bit - as well as how mobile will I be at 10mg. I'm struggling walking at 15mg, the fatigue is awful after a few hundred yards. I might have to use the train and buses to get to the hospital - and even the walk to the department within the hospital is daunting never mind the connections on the way!
I must say looking back it was horrendous, but at that point I hadn’t had a great deal of benefit from the steroids but without them the original symptoms came back what felt like 10 fold , I think that was because how exhausted I was having had 2 family bereavements in the month and having to travel to funerals and then the scan, definitely find travel exhausting, could you break up the journey or travel a day or two before?
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