So after almost 2 weeks of no appointment coming through for me to have the biosy all due to referrals not getting to the right department! The ophthalmologist has said its not worth doing the biosy as I have had 3 weeks of prednisolone at 60mg, he feels there will be no benefit in doing it. However, they are back again going on about my age & likelihood of me having GCA based on that. Im finding this annoying & frustrating as I dont feel that a diagnosis should be based on something like that. I have been seen by a rheumatologist registrar so far but the consultant has called me today & arranged to see me in a week. When I had my bloods done 2 weeks ago they indicated I wasn't responding as well as they would like to the 60mg. Now shes asking me to reduce the dosage to 50mg before I see her & no bloods since 16th Jan. Im worried about how this is going to affect my treatment! They also have no differential diagnosis as they eliminated most of these.... my symptoms of headaches, jaw pain are much better, but I remain tired, fatigue, muscle aches & even dizziness lately ..... im so worried about how this is going so far ..
Biosy: So after almost 2 weeks of no appointment... - PMRGCAuk
Biosy
Read this link and also have you read the latest diagnosis and treatment,
top right hanbd corner on this page, New GCA Guidelines 2020.
link.springer.com/epdf/10.1...
If you are at a loss when you read the, come back and ask the questions. Someone on here can always help.
Both can be printed off and if necessary you can ask the questions of your Rheumatology.
One thing they are correct about the biopsy, if not done within 4 days of starting pred it is useless, they must go on medical symptoms.
Hope this is of some use to you . Take someone with you to fight your corner.
My hat goes off to you; it is sooo difficult fighting your corner when you are getting the side effects you describe. It reminds me of my early weeks and having to fight my corner too and it wasn’t as nearly as tough as yours. You just have to arm yourself with up to date info such as jinsac’s and stand your ground with awkward questions.
Fatigue, muscle aches and dizziness go with the territory I’m afraid so absence of the pain symptoms is the best you can get on high doses. I worked out that my dizziness was due to motion confusion because my eyes were unable to change their focus to any moving about.
Thank you for this, it makes me realise that what Im experiencing is normal for what Im going through and it gives me comfort in a strange sort of way so thank you.
Im busy jotting things down I need to discuss on my appointment so Im a little more focused..
Oh yes, focus, that elusive beast.
If you aren't feeling confident to start a taper before your next Rheumatology appointment or without another check on your inflammatory markers then contact the GP and ask them to repeat your blood tests and talk through your concerns and extra questions with the Rheumatologist by requesting a phone back appointment via his Secretary.
You could organise the phone appointment after the repeat blood test results are back so you have something to work from too.
Write down all the questions you have , especially about any further investigations you want to know about.
Although the taper may be fine ( or they may be using your response to lower doses to help them establish what happens to your pain and to help them make their final GCA diagnosis , a horrible way to do it but some doctors do ) if you don't feel you know the facts before you start and are already feeling worried you may get more Pain returning anyway because if Stress. Get some Peace of mind first and get them to confirm what they want then try when you feel more sure of what decisions are being made .
Take Care
Thank you, your suggestions sound safer to me & I think I will speak to my GP tomorrow about doing bloods, I think its importantto know where the markers are since one was rising instead of dropping on the last results. I suspect their plan is to reduce meds & see what happens otherwise Im not sure how we can move on with the diagnosis. Its bad but I see why they would do it. They are not very efficient around communication & referrals thats why we are in this mess, i had to chase ophthalmology who came back saying they never received the referral, so now its too late to do it.
No point crying over spilt milk, I will take your great advice & move forward.... thank you
Even with timely referrals, my biopsy was after about 3 weeks on 60mg pred, and mine did come out positive for GCA. I've heard different lengths of time for the biopsy window of opportunity. It is such an invasive procedure, and it would be disappointing to get a false negative, though they sometimes happen even in the best of circumstances.
There is some relevant information in this link to the Bristol PMR/GCA Symposium: rcpe.ac.uk/sites/default/fi...
Table 4 indicates that jaw claudication (where the pain gets worse when chewing) is about 78% predictive of GCA.
I had the biopsy nearly 8 weeks after starting preds at 40mg and reducing to 30mg just before biopsy. The biopsy was positive. It was also a painless procedure. Good luck with everything.
Sorry to hear that you to are in this limbo of diagnosis and differentials. I am 52 female, and in the same mess after a year. Anyway what blood tests are not responding? How high are the numbers?
Its the PV blood test its rising instead of going down. The CRP has dropped. I haven't actually got the numbers, I will be asking all this at my appointment next Friday. I also will need to ask why they haven't done the ESR blood test instead. Im hoping that seeing a consultant will answer most questions & Im hoping for more than 'you're too young' nonsense they have been feeding me for 3 weeks now.
ESR is an old-fashioned and very non-specific test and it has been recommended for years it be phased out. It must also be done within a specified time of being taken whereas PV isn't so sensitive. Some labs have the facility to do plasma viscosity and that is perceived to be better than ESR for most purposes. However - they don't have as much experience in interpreting it and somewhere there has been a recommendation that for PMR (and possibly GCA) they should continue to use ESR as it appears to be fairly meaningful there. Sorry - haven't been able to refind the reference where I read it ...
Thank you. So much still to get my head round all this .
Don't worry about it - I worked in the medical field most of my life and I still sit asking myself questions ... Why should you know???
I know what you mean,
Im a health professional too, my speciality is psychiatry so not much clue on general medicine. Im slowly finding my way but so many terms & things to get my head round
I was diagnosed with GCA jan 19 and put on high dose pred. I have recently following my 2nd taper had a bad flare and GCA symptoms reappear. I was hospitalised and the doctor has ordered a biopsy. I have been advised by others with pmr to not have it as it will be a wasted, uncomfortable exercise due to tha high dose and it will be masked. Surely the fact the high dose has eased the symptoms is proof enough. I've refused to have it done. I was told at 57 I was a bit young. The fact your symptoms of jaw pain and headaches have eased makes me think its GCA and proof enough. Also it is still possible to feel fatigue and muscle aches, I take magnesium tablets and a salt bath 1 hour before bed which really helps. I would ask for blood forms ...and ask for your CRP and ESR results. I do this, it's your body and you have every right to know more about it. Best wishes
Thank you
"Over 50" is the age range for GCA - where do they get this idea that late 50s is too young??????????
I know, I've been very unfortunate with the rheumy I had for a year! ...hoping the next one is better
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