About to have a hot chocolate and hit the couch (again).
Been getting mucked around, Dr talked to hospital to organise the 2nd temporal artery bypass on the left this time. dunno why first was positive. Hospital knows nothing about it, he talked to them this morning. As of 2pm left in hands of a receptionist. Now 10-30pm no news. so waiting in pain, 3 hourly endone. Choices - present at ER, get morphine for pain. I have just spent 7 months weaning off pain meds, got to 4mg of jurnista a day ( was on 24mg ) and 2-4 endone a week (from 10mgs 3-4 times a day ) and Panadol as needed. So I go to Er get morphine, then more withdrawals. Choices cope with the pain ( BTW this was all put in to motion , the biopsy over 4 days ago ) or spin it out, nearly cry while I eat, talk, smile and the constant temp artery pain but no more pain meds and I am at home. Going now, Hot chocolate cuddle dog and couch. Thanks me.
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Rowboat
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I don't understand why you need a second biopsy as the first was positive and you were on prednisone for quite a while since. What do the doctors think this will accomplish?
And hot chocolate sounds nice but here the temperature today is going to mid 20s, feeling like mid 30s because of humidity. 😅😥😎🍻
Hope you get some good answers and good help soon. ❤
Sorry for your suffering Rowboat they (docs) really don't seem to be supporting you appropriately. Have they taken you off Pred to do another biopsy? Pred is the only drug that will ease the GCA pain and a huge dose will be required. I don't understand the decisions they are or are not making around you!!!
Well done for getting your heavy duty painkiller dose down. I bet you did that alone too.
Your self care with hot chocolate, dog and couch sounds very sensible.
Booked in for biopsy tomorrow. Got a long weekend here great. If they try and stuff me around and say I don't have it, I have found the only Specialist in Australia with a Major interest in GCA/TA and he is a 6 hour drive away in Melbourne. I am not having a lot of unnecessary tests to find what is causing this pain when I already have a positive biopsy and just the way the pain is. So the docs here muck me around and I am off. Thanks again you people are a wonderful support
Apart from any other consideration - you have been on high dose pred, that will interfere with a TAB anyway. They don't appear to have a clue!
Where are you? A lady with a strange and resistant form of PMR on the patient.info forum is from Canberra and sees a doctor in Sydney who has put her on Actemra and it has been really successful.
and put up a post. Her user name is FlipDover Aust and she posted the fifth post (currently at least) on that page so you could post there initially.
I know where Wagga Wagga is - the next OMERACT conference is on Aus and at the last one they promised it WOULDN'T be in Wagga Wagga so I looked it up! It will be just north of Sydney, Terrigal.
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