Hello friends, I have gone to ground a little of late as I didnt want to 'moan' about this bloomin condition. Last time I posted I was on 35 mg of Pred and still having daily pain of GCA having tapered from 60 mg in just 2 months. So i didnt continue the taper programme laid out by my rummy but followed good advice on here and that of my GP to stay at 35. After seeing my rummy last week another Ultra sound revealed halo effect on my temporal artery left and right and under arm pits so after 3 months on pred I had a temporal biopsy yesterday..... yup.
The surgeon was wonderful and after digesting the risks of a stroke and facial palsy we began. As I walked into theatre on his ipod he had some almost country and western and being in need of soothing classical i asked if he had any Tchikovsky.. he didnt so I asked jokingly, well then if not that what about the Boss, some Bruce and his face lit up! So all through the procedure I was listening to my favourite Bruce album whilst he delved into my temple to remove a bit of my artery to which I was very attached. It did help a little when he got the hair clippers out and my lovely long blonde hair was shaved.... his nurse had apparently warned him that there is a younger lady in the ward with long hair and that he had to be as minimal as possible. He admitted that he missed the hairdressing lesson at med school and that he was more used to old men and ladies short grey hair than someone in their early fifties with a glamorous long style.... well now its a punk look, shaved and with stitches - I havent seen it yet as I am sporting the latest bandage around my head - I am sure it will catch on for autumn - bandages are the new scarf right? But thank goodness for Bruce..... Thunder Road will never be the same again but it got me through a painful hour!
I have also been put down for a PET full body scan....not sure what that is about. I have had an MRI scan 5 weeks ago and still no results as the hospital is behind and my rhummy is going mad about that. Last week One eye doctor questioned that I have GCA because my eyes are not affected and my blood markers are not significant and that it might simply be ear ache or jaw pain.......well I nearly poked him in the eye and told him its not always the case about blood markers to show inflammation. The eye doctor hadnt looked at the ultra sound results or listened to my symptons of GCA nor could he known the damn temple pain. I know its still active in me and the rhummy admitted that he thinks i should have stayed higher dose for longer..... bit late now... so do I go back up now?
Confused and fed up... yes... I told the eye doctor that I had a good GP who spotted this early and that some people were not as lucky and were misdiagnosed and doctors like him wasted time. I told him to look on the forum!
So today I am wondering what next? 30 mg of Pred and confused... and still in pain... and still needing to work.... and with a punk hair do!!! AS Bruce would sing; feel like I am just 'dancing in the dark'....
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Fieldofdreams
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I must say that I admire your bravery , humour and resilience. They do seem to be exploring your condition very thoroughly. This is the moaning room you know, it is one of the reasons we come here. Just wanted to check in with you to express my admiration and sympathy for what you are going through and how you appear to be handling it. Please let us know what happens next. Take care, get medical advice on dosage.
Thank you Jane. I must admit to a couple of weeks coping with work and headaches were I did get 'blue'... its frustrating not being yourself isnt it and having to take breaks when I am in a music session or directing a scene.... still, there are so many worse off than me.x
How kind of him to admit his reduction wasn't helping! Any of us could have told him THAT!
I find it a tad worrying that the halo is still there but you weren't told to up the pred now the TAB is done. The halo is now felt to be more reliable than the TAB and if it is postive there is no point doing a TAB.
Good on you for educating the eye chap - they are usually better at GCA than the rheumies but that sounds like one to miss.
The PET full body scan should show up any inflammation anywhere else in the body - arteries, joints etc. However - even 10mg of pred is enough to compromise the results and if you have the halo in the cranial arteries that is usually enough to say you need high dose pred - and which is then enough to manage any other inflammation in the large vessels.
Under the circumstances, I would speak to radiology about the PET while on relatively high dose pred - even if you probably need rather more. It is a very expensive test with waiting lists - why do it if it is pointless?
Thank you so much PMRpro for your sound advice as always. I did question the TAB but the doctor doing the ultra sound convinced my rheumy as I think he realized wrong taper. He was on the verge of doing a TAB the beginning after 10 days of Pred but didnt because my symptons were classic GCA except the blood markers. He said ultra sound was more reliable and after the first ultra sound he was convinced; I think the eye doctor doubted it and therefore they decided to do another ultra sound which actually showed left side as well as the right were I get most pain and then under armpits as well now. The ultra sound doctor kept saying she would do a TAB.
I have an appointment with rheumy next Wed to get results
Not sure after what you have said if I should up the Pred myself? As for the PET as you say what will it show?
Seem to be stuck in a weird place with all this dithering.
thank you again for being the sound down to earth advice.
The Boss is good in any setting! Agree with PMRpro if you have halos on ultrasound and continued symptoms you’re not on enough Pred no matter what your markers are! Hope you get relief soon!
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