Following my disastrous hospital appointment yesterday when my biopsy didn't go ahead, I telephoned the rheumatologist's secretary as suggested but she was on answer phone - again! - so I left a message. Then, later on I had a call from another rheumatologist - I think she was a junior member of the consultant's team. First of all she said that the biopsy should still go ahead but when I questioned her about the usefulness of it, she eventually admitted that it wouldn't change the treatment, it would just help them in future should the condition return. She also confirmed the more serious of the risks - bleeding from the tied artery and nerve damage to the eye - and said that some other patients have also prefered not to have the biopsy. Unfortunately, it appears that, unsatisfactory though this test is, it's the only test they can use!! The diagnostic scan is very new and our hospital has no facilities to do this anyway. So, I just continue with the 40mg dose - thank goodness the headaches have gone and my vision is now clear so I'm allowed to drive again - until I have another blood test two days before I see her again on 3 August. She'll then be able to see the level of inflammatory markers and will decide how to proceed with the steroid dosage.
To say the last 36 hours have been stressful is a very big understatement - and again I want to thank this forum, not only for the moral support yesterday evening but also for all the advice I've received from members which helped me to make a decision about my treatment. I still don't know for sure whether I've done the right thing but I really can't see the point in going through a procedure which won't change my treatment.
So there you are folks, this is the most recent episode in my saga - I'm sure there will be many more!!
Jan
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Janann25
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"it would just help them in future should the condition return" - only if it were positive. Negative is negative - you still don't know one way or the other.
I don't know - the TABUL study reported in 2015 - I don't call that "very new" but she is right, its availability is restricted.
Well it was thanks to your advice - and to the advice of others - that I was able have some understanding of this illness, which has helped so much with this. So, a very big THANK YOU.
Jan
I was hoping you had managed to think of a way through it all after the beating you took. I don't have a lot of pmr/gca knowledge but trying to check to see inflammation in pre-treated tissue sounds wrong. If the higher dose has been controlling symptoms especially so. I hope it felt good to take control of it a bit more. Well done for contacting them to try and sort it.
An other jan🤓
I have to be careful with these emojis....tried to thank my neighbour for a bit of kids birthday cake (naughty) and sent two thumbs up as yum and thanks.....then put my reading glasses on and found I had put the middle finger emoji...twice! I was mortified 😂😂
I decided not to have the biopsy due to the fact possibility of a false negative and the fact the treatment would of been the same. I am in the US and would of had to pay a significant portion towards my insurance for a test that is not 100 percent. Based on 3 different doctors clinical observations I felt it unnecessary. It would of been nice. When questioned from other docs I just mentioned the clinical diagnosis.
Thank you for your reply - how long ago did you have to make your decision and has anything happened since to make you feel you should have had the biopsy. It's good to hear the opinion of someone who's had to make the same decision.
Well done you for firstly thinking this through and seeking advice before jumping into something and also dealing with the aftermath. I personally really feel you made the right decision and avoided an unnecessary procedure because of the length of time you had already been on pred, which would have screwed results anyway. Best now to put, I believe, that behind you to deal with the symptoms and move forward. This is a journey and we learn as we go along - it's just so good to have the advice and support of others on this forum who have trod this road before us ! X
We do have information that 50% of GCA biopsies are considered 'false negatives'. This is often because the surgeon doesn't take enough tissue to get a decent sample. Ultrasound can give enough of an indication to show whether a follow up biopsy is necessary or not. The problem is that ultrasound technicians have to be trained to do the job, and there are not enough of them yet who have had the training. At PMRGCAuk we are very concerned at the number of people who are undergoing biopsies that are either unnecessary or ineffective. The procedure does give scientists sample tissue for research - but that's a small consolation, to be honest.
First of all, thank you so much for all the work which you and your co-founders did in setting up this forum - it truly is a life line to so many people. I was really interested in the percentage of "false negatives". In my own case there was a lot of pressure for me to,change my mind but, having learnt so much from here, I was able to make what I feel was the right decision. And, as an aside, when I really pushed the consultant for a good reason for the biopsy, she just said "if it's positive, it would help,us in the future". As you say, a small consolation when you consider the risks to,the procedure.
Well done for your decision and facing up to it. I think, if you let him, your husband will be there, in your heart, and he will help you. I am so sorry that you have to go through this awful illness so soon after loosing your husband.
I had the biospi and it was positive. It was all rushed through but like you, I felt is was for their benefit rather than mine. I was just so shocked at what was happening to me, I went along with every thing!
I am not a good patient and like many of us, we all seemed well active folk. I was on 70mg steriods for too long and now have shingles & Post something that will drag out the shingles symptons.
Kate - is there any documentation of that figure? It is one I quote frequently - but it would find a reference very useful. I know I read it about 8 years ago...
I'll have a look back and see if I can find it. It's one of those things that rheumatologists often talk about when amongst one another so I've heard it mentioned many times. Yet it must be published in one of those papers somewhere, maybe to do with the TABUL study.
I had a positive biopsy just over 2 years ago but my consultant is now using ultrasound. I didn't realise there might be a follow up biopsy after the ultrasound.
I recall that the surgeon who did the biopsy seemed pretty pleased with the sample. He said it was a 'lovely piece of artery'..... not a good chat up line 😄. Perhaps he could see the inflammation?
I didn't realise that the biopsy was optional and had been on 50/60mg pred for 8 days by then. I desperately wanted confirmation of GCA so that it wasn't a brain tumour which was my initial thoughts and fear.
Most NHS staff have some very funny ideas about what is "nice" or "lovely"! I could tell some stories but I won't for the benefit of those of you with more delicate sensibilities!
The appearance of a really inflamed artery is quite typical - and even when superficially it looks normal often the histology (looking at the cells under a microscope) will have typical signs even if the inflammation has faded with pred. A bit like the scar left after a cut has healed.
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