Sorry it's me again . . The newbie. .
Been reading a few articles, thank you all so much, it does help, however I'm worried that most of you had the biopsy within days of suspected diagnosis . . My biopsy is booked for the 12th Dec . . 3 wks away. . Surely pointless after being on 8 Pred a day
I know I'm just scared and looking for a way out of the op . . Lol
By 8 pred a day I assume you mean 40mg/day of pred (8x5mg tablets)? Yes, to some extent I do see your point about the pred having made the biopsy rather pointless by the middle of December. Call your rheumy if you can, your GP if not and ask to discuss this in more detail. But all I said in the other replies still stands: a few months of high dose pred is preferable to risking going blind.
My biopsy was after 3 weeks due to mix up was worth going through with because the consultant I saw is the go to men in Shropshire came away feeling informed Olive
Lisa, don't apologise for posting - that's what this site is for! I didn't have a biopsy as once diagnosed the symptoms were so 'by-the-book' and the diagnosis was confirmed by the almost instant resolution of my head pain and vomiting. I have read that up to four weeks from starting steroids the biopsy can still produce results. However, the result isn't 100% reliable as the large cells they are looking for can escape the tiny portion biopsied. You have no need to be scared from what I've heard from many others undergoing this procedure, and I'm sure some of them will be along to reassure you shortly. The important thing is that you have been prescribed steroids to protect your eyesight rather than risk it by waiting for the biopsy.
Thank you I guess I have no choice but to be brave, it's just sad I have to go through it when I'm convinced I don't have it. .
And yes I kicked up at first 3 wks ago when they wanted me to start steroids . . I'm a Homeopath we don't do STERIODS the principle of what they do to our life force is completely wrong. . BUT like you and GP said or rather she shouted at me . . I have to to protect my sight. . So here I am on the NHS treadmill and I'm far from happy about it, but if I don't go along with them they will wash their hands of me. . . I have no choice. . We have no choice . . When I become stronger about all this I want to help others to overcome this kind of fear . . Thank god I found you guys, if I said this to family and friends they would think I've gone mad or over reacting. . . Thank you everyone, x
The thing you must keep in mind is NOT that "they'll wash their hands of me" but that they are truly concerned you might go blind. You obviously DO have something very inflammatory going on and pred is dealing with it. The headache you complain of is an indication that whether it is GCA or any other form of vasculitis it is affecting your head - affecting your brain's blood supply. Brains don't do well with a compromised blood supply.
You were obviously convinced enough of the need for the "NHS treadmill" to go to the GP in the first place. Like a lot of other people you too must have known at the back of your mind that there are places where homeopathy isn't the answer. I use homeopathic remedies on occasion - but it has never crossed my mind that I would use it here. I do remember reading an article where a homeopathic doctor said that homeopathy doesn't have a role to play in GCA - I should have kept the reference.
Watch this space Homeopathy will in time return me to health. . .
Homeopathy doesn't treat diseases it's treats your symptoms, and yes the STERIODS are a quick fix that I need right now but once the bloods are balanced. . I can then treat what symptoms I have left . . And return my immune system back in balance. .
I don't expect anyone to understand my training, just like I don't understand this GCA right now . . But I'm accepting your believes and advice whole heartily . .
Some of the patients I have "cured" cannot of "been all in the mind"
I didn't say it was in your mind - I too use homeopathy. Homeopathy will almost certainly help you fight the inflammation in the long term - but it won't do it quickly enough to ban the risk of loss of sight. That was what I said and meant.
Lisa, apart from the risk to your eyesight, the other important thing you have to keep in mind is that even if this turns out not be GCA, the steroids are at least working to control and reduce that very high inflammation, as shown by your ESR result before treatment. Such inflammation left untreated and lurking in your body can lead to many other 'nasties'. Knowing that might just help you to feel more accepting of the situation, although I do understand how difficult it is to accept, especially when such treatment goes against your training.
Lisa
I suggest you read the BSR Guidelines on the diagnosis and treatment of GCA.
I also suggest you read the Newsletters, available on line at PMR GCAUK, PMR GCA UK North East Support and PMR GCA Scotland and people stories on their websites.
You could also attend a support group meeting (if there is one in your area) where you can talk to people who have lost sight either partially or totally.
I came very close to losing my sight and the NHS moved so fast I was dizzy, without that speed, I would not be writing this today.
GCA is not to be messed with - your sight it is precious and NOTHING except prednisolone is standing between loss and keeping it.
Don't worry I'm taking Pred 8 a day as instructed by Rhemy I have no desire to lose my sight I have 4 digs and a husband to look after . . X x
Lisa: Even if they don't find giant cells (on account of the Pred) your temporal arteries will remain inflamed consistent with AN arteritis (so long as these particular arteries are affected). Combined with your symptoms the doctors will then diagnose which arteritis. In my opinion as bad as it is, GCA is one of the least bad of the arterial diseases. All protocols dictate giving Pred to protect your sight before the biopsy. The doctors reading the tissue may describe the inflammation and then state that you don't have GCA because you don't have giant cells. But your rheumy will correct that diagnosis on account of the condition of the arterie(s). A lot of US research indicates that 2 weeks of Pred doesn't alter the diagnosis of finding giant cells. (I know that you will have had 3.) (Apologies to all of you who never manifested inflamed temporal arteries. I know that it can affect large arteries (such as those around the heart and spine) which are not being biopsied, and that you are very, very sick.)
Dear Lisa630. None of us want to scare you. But your eyes are a serious matter. GCA blindness is quick. There are posters on here who have lost the vision in one eye. Dorsetlady is among them. Usually you are prescribed at least 60 mg Pred if the Rheumy is worried about your eyes. If you start going blind it's not unheard of to receive 1,000 mg Pred. Just because you are taking Pred, you are not home free. What is the "blurry vision?" Is it like a curtain that has dropped over your vision (from any angle)? In the US we are told to go to a hospital emergency room immediately if we have any eye symptoms. After 3 days the Pred actually kicks in to interfere with certain antibodies which are attacking your arteries (with GCA). My eye symptoms GO AWAY
(sorry) after 3 days. Consider that EVEN WITH THE PRED you still have eye symptoms. This is not good.
Also is it in one eye or two? Usually GCA starts in one eye and then after about 5 days starts in the other (making you completely blind if you don't take care of it). The damage is irreversible. If you wait the doctors can't fix it.
The only reason I've not rushed to hospital, is I remember a slight blur when I was prescribed Pred 3 wks ago. . I did a 10 day course everything went back to normal. . Bloods normal no symptoms Rheumy said come off Pred and see what's happens she thought it was prob a virus I had as I had no real GCA symp. . 4 days later my bloods were back up to 86 . . So I'm now on day 2 of Pred and I remember last time I had slight odd feeling in eyes. . Like I need new glasses on my right eye. . I'm going to ring GP before they go home. . . Doing it now x x
Lisa, if your headache resolved on the first day of taking 40mg Pred and has now returned on the third day together with blurry vision, then you may need a higher dose, in which case you need it now. A&E would be the wisest place to go if your GP is unavailable. My head pain resolved within hours of taking my first 40mg dose, and my consultant rheumy told me that if it returned at any time to contact him immediately.
I think that is too long to wait after starting prednisone. I was told two weeks was the cut off. As I said on another post...I was told by a very good doctor that when prednisone works really fat....almost immediately....it is always GCA. You treat the symptoms not always what the test shows. My labs were perfect but I hd a flare.....go figure .
I think that is too long to wait after starting prednisone. I was told two weeks was the cut off. As I said on another post...I was told by a very good doctor that when prednisone works really fat....almost immediately....it is always GCA. You treat the symptoms not always what the test shows. My labs were perfect but I hd a flare.....go figure .
I think that is too long to wait after starting prednisone. I was told two weeks was the cut off. As I said on another post...I was told by a very good doctor that when prednisone works really fat....almost immediately....it is always GCA. You treat the symptoms not always what the test shows. My labs were perfect but I hd a flare.....go figure .
I think that is too long to wait after starting prednisone. I was told two weeks was the cut off. As I said on another post...I was told by a very good doctor that when prednisone works really fat....almost immediately....it is always GCA. You treat the symptoms not always what the test shows. My labs were perfect but I hd a flare.....go figure .
Update on Temporal Artery Biopsy
Biopsy Negative for GCA
GCA biopsy while on prednisone
Bone marrow biopsy
