So here it is , yesterday morning saw my rheumatologist,but was not expecting to receive the results of my tab so soon , well I have them he said . Negative. I can only say ,yes I was shocked ,confusingly shocked , I’d had border line raised markers ,4 doctors on route diagnosed the same o an of course all supporting symptoms .i left relieved but still a little confused ,However last week when my eyes went out of focuse I’d made an appointment with my ophthalmologist for yesterday afternoon, so of I went. Normal testing on arrival , then in , I began by giving her the negative paper results from last hospital, then she went through her tests ,ok I won’t be a moment I’ll just check the other test we did on your arrival ,I waited but on her return she bought in a consultant,she too examined me adding skipped legions smiling gently she explained not all g c a tab arepossitve ,we will work together to save the sight as once it’s gone it’s gone , wow ,did she really say that? She did then went on to to wed expect to see this in an older person in their 80s but your young , she explained the pred dose to stay at 40for 5days dropping to 35on day 5 but day 7,return for more blood work an day 8 I’m. To return with or without appointment being received ,yes my eyes have been worse than usual but I thought it was due to preds ,I can’t tell you how I’m feeling this morning,numb is a good word. I’m soo sorry to start the day with you all like this ,I’m trying to be positive an hope . Have any of you had anything ike this ? How can this happen ? I just thank god I had the presence of mind to make that appointment, o an rheumatologist wants to see me in 6 months !! As if , he said he’d revisit the diagnosis should there be any development 😂😂😂lol hope your all ok an that I haven’t ruined your day by sharing this with you , love 💕 to you all x
Diagnosis,has left me soo confused : So here it is... - PMRGCAuk
Diagnosis,has left me soo confused
What an unbelievable shock, I hope u had someone with you. As u say the only good thing is u were persistent and they’re going to follow u up closely. A salutary lesson to us all not to take what the doctors say as gospel and ignore our gut instincts. Good luck to you 🤗
Morning wraysbury 🌹that’s for caring , yes I was by myself as hadn’t expected that . I’m ok still in shock am mulling it all over , ya know , guess I’ll know more next week .but for this week I’ll spend it counting the many blessings IDO HAVE !! Ses I 😁 keep a focus excuse the pun lol well else can I do . You keep being good to you x
and you. Take really good care of yourself. Xx
Thank goodness it was caught in time. It never ceases to amaze me how little some rheumys understand their subject. Do take care of yourself and well done for persisting.
I know , it beggars believ .they say there’s none so blind , as those who do not see, wonder what they say to , there’s none so deaf !!!! I won’t turn the air blue x
So you're the monkey with a hand over it's mouth!
Yup that’s me 👠in heels of course !!
Blimey and to think some people trained for years to be that stupid
Hi anguejnz, I know , mad or what ,
👏🏻👏🏻👏🏻👏🏻🙀🙀🙀🙀😜😜😜😜
I am sorry for your profound disappointment. I have however, picked up on here enough to know that this was a more than likely outcome. Symptoms rule with GCA. Thank God for your good sense and your ophthalmologist. Biopsies can only really discount GCA in the section of the artery that they perform the biopsy on. I wish that ultrasound was made more available to us, as I understand it the results are more reliable. I can’t help thinking that the surgeon/Rheumatologist was irresponsible to give you the all clear.
Hi Sheffield Jane ,I echo irresponsible an add CoLD, plus many other colourful words 🤚🏽There I stopped myself lol but thank you for your kind words x
Unfortunately, as you found out, the TAB is not the gold standard test that many doctors think it is. There are many on here whose test has come back as negative, but like you actually have GCA. I really don’t understand why so much credence is placed on it. Okay, if it comes back positive then you know for sure you have GCA, but if it comes back negative it doesn’t mean you don’t have GCA - just means the sample didn’t show any sign of it - not the same thing at all!
My GCA was also diagnosed by an Ophthalmologist, but unfortunately I’d already lost the sight in one eye. Previously undiagnosed for 18 months by GP.
Just be thankful it’s been caught in time, but do monitor things and don’t reduce if you don’t feel happy to.
Morning Dorset lady thank you for your that ,it is a big pill to swallow though! But now the fear has become a reality I can’t help but wonder will I still loose it as I’ve been on preds for a month now an yet it still detereated, do you have any thought on that for me ?? Wishing you well x
Normally a higher dose is given if there is a possibility of sight problems - so I think you need to touch base with the Rheumatologist, even though you probably have no wish to speak to him at the moment, just to check if you should go higher.
Please let us know the outcome.
Thankyou
Thank goodness for your ophthalmologist.
Unlike DL I would insist on seeing another Rheumatologist - talk to your GP.
He should know the Diagnosis & Treatment Guidelines for GCA and PMR issued by the BSR direct to every Rheumatologist in the UK inside out. The Biopsy is a 'hit and miss' procedure. Negative result, he goes on medical symptoms.
That particular Rheumatologist could cause someone in the future to lose partial or total sight and when it goes it is gone. Methinks you should be making a complaint. Patient Liaison is the starting point.
My biopsy was scheduled too late and it was cancelled I had been on 60mg for 5 days.
Rheumy said "medical symptoms over ride a biopsy what ever the result".
Hi jinsac yes your right an I will , but first I must win this fight !! But first I have to get up an stop feeling sorry for myself , I’m just nursing my wounds if you get what I mean 😁but thank you
Jinasc is right you need another Rheumy, but your current one needs to be made aware of the danger he’s put you under!
I read the first sentence and was all ready to say "Negative TAB does NOT mean it isn't GCA, it means nothing more than they didn't find what they were looking for. That can be due to all sorts of things, inlcuding the skip lesions your eye specialist mentioned, but also poor surgical technique, a not very good histopathologist, it isn't affecting your temporal artery but IS affecting other arteries in the head, etc etc."
Thank goodness for a sensible opthalmologist - who presumably saw something she didn't like? It will be fine - but it might not have been had you just seen the rheumy. Eye people do tend to take it all rather more seriously I think - because they are so much more aware of the potential catastrophe of sight loss. Whatever the side effects of pred - the ultimate side effect of GCA is worse. And then it is too late to revisit the diagnosis...
Promo I’ve been waiting to here from you 😁an you never disappoint,thank you . I understand but there’s still a niggle in my head saying ,can I still loose it fully ?even on preds ? I was just on a face time call to my son an I couldn’t even see him he was a blur. So excused my self saying I needed the bathroom, then cried . O in time I’m sure I’ll get my head round all this , but right now ?..... as always I hope your ok x
If you have even niggling GCA symptoms please question whether you should start to reduce your pred dose on schedule. Forty really is the bottom level for GCA treatment and it would be better to stay there longer and be sure than risk a flare by tapering too soon. There are others on the forum who have barely got their GCA under control, tapered according to instructions, and then ended up having to increase to a higher dose. As with PMR, slow and sure wins the race, in GCA it seems particularly in the beginning. Best wishes!
Thank you heronns x
If you are having visual problems don't hesitate to call the eye specialist and tell them clearly and firmly that you are worried. 40mg is the bottom of the range for GCA - visual symptoms often need 60mg or even more. Don't be afraid to question them - as HeronNS has said.
Thank you I already did thank goodness it’s been used to 60 , promo ,again heart felt thanks x
What a palava! Not acceptable with your Rheumie make sure he/she knows the actual outcome then you can change to another if you choose. Don't wait 6 months. Give the Opthalmologist a pat on the back from us! I had visual disturbance and lost the sight in one eye, which thankfully came back, and am ever grateful to my lovely 'knowledgable about GCA' GP who fast tracked me to Rheumatology. I was diagnosed via Ultra Sound and on 50mg pred within 24 hours. Had a negative TAB 3 days later, but as already on steroids it was no surprise - plus they have to get enough of the inflamed 'bit' and that is tricky - they had me pressing along the temporal artery to see which bit hurt the most then dove in! That was 4 years ago and my Rheumie now prefers US. Best wishes to you and keep us updated. 
Hi telian, thanks for that , it’s been a mad couple of days/that’s putting it mildly!! But now I’m back an fighting 🧠begun the day by fighting head rheumatologist an waiting for a call back. Arm with the knowledge I’ve learned from everyone on the forum I made my case ,shocked myself Lol I sounded like a health professional -....nope better , then went to gp to bring them up to date he added calcium carbonate an but d , so all in all a very pro active day 😀so deserv 💤💤💤all the best
Well done you, we all have differing experiences but with eyes there is no room/time for complacency and if we're wrong then we'll put our hands up but I don't think so.... Best wishes and try to keep calm whilst remaining firm or you'll come crashing down because of the high dose pred when the pressures off, just a tip.
Come down haha chuckle choke 😂😂a very quick up date ,the rheumatologist called back ......I don’t have gca !! Halo red flag to bull an quoted the gca guild lines . To my shock he told me he’d wrote them🤓was I talking to a man who actually did ?? Mr shrerangon ???? But I didn’t back down , an he point blank refused to treat me as no sign of Vasculitis. I’m ok just putting my gloves on lol I’ve got my preds ,dtr an ophthalmologist.round 2
OMG - so he's just left it at that the man who wrote the GCA guidelines! Second opinion from Rheumatology if it were me, be interesting to hear what the Opthalmologist (and PMRpro) has to say..... Will wait for the next round...
Didn't write them on his own so he needn't make that out. Plus the new lot are still under consideration and consultation. The old ones are from 2010 - out of date...
And one of the top GCA people in the UK, without whom there wouldn't be PMRGCAuk so we do owe him a lot, told someone they didn't have GCA as the TAB was negative. She stood her ground as she felt so ill and he reluctantly sent her for a PET scan which showed her large arteries all lit up like an xmas tree! He didn't even tell her to her face - sent a minion with the 60mg pred script and "see you in 6 months". She asked about cardiovascular monitoring and he said there was no need, no risk. So when she had a heart attack (almost certainly due to the GCA) she got referred to a specialist vasculitis person in London. Who wasn't too impressed...
Promo !!! Save me 😀this is unbelievable , but he had a run for he’s money, until I replied ,it’s ok I have the reports back to a/e so if any thing ANYTHING happens to me , you’ll be held responsible. I think that’s when had became a tad upset 😡 I also told him not every one has raised markers , and just because I didn’t fit into HIS text book that he should open his mind , do you think I ruffled his feathers lol hope so .any how I’ve come up with glaucoma ,trying to find another cause , will find out for def Monday but please any ideas or help would be so appreciated xx
O u witch !!!! Promo appeared , I love you all 💕but de he write it I ask my self ? X
Never been called that! Is it a compliment?.....ha ha.. I'm more of a psychic, do you want to know your future?.......
Ooo dare I .....yes but I think I know it “assault on rheumatologist by frustrated parents lol
You can blame it on the pred!
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