Hi, Very new to all this and totally befuddled by it all. Four weeks ago I was sent urgently to hospital. I was seen by a rheumatologist who immediately put me on 60 mgs of prednisolone a day. I was kept in as they wanted to do a biopsy. I still have a pain in my head ( not headache ) and it has affected the sight in my right eye. I have an appointment to see Opthalmologist next Tuesday and on the 16th June to see rheumatologist to get results of biopsy. My question is in plain English can someone please explain :
A; what is going on with ?
B: how long is this going to last ?
Sorry I know I sound very stupid, but as I was diagnosed at the same time with Fibromyalgia I'm finding my brain is mush lol !!
Any and all replies gratefully received.
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Lin-63
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I am sure someone with more knowledge than I have will reply soon like PMRpro but in the meantime I want to reassure you that you're going to be ok. It sounds like they have taken a biopsy to determine if you have GCA and the fact that you are on a high dose of Prednisone now means that you're having the correct treatment. I'm not sure why they haven't explained it to you so that you are informed and understand what's going on. The fact that they have put you on 60mg of Prednisone means they suspect you have GCA and the biopsy should confirm this. Good luck and remember that no question or post sounds stupid. You are not alone and everyone here will listen and support you.
Temporal arteritis is one version, if you like, of something called giant cell arteritis (GCA). Something causes your immune system to go wrong and not recognise your body as "self" so it starts to attack various cells in the body. This causes inflammation of various sorts - in this case very large cells form in the walls of the blood vessels. This causes various symptoms - low fever, feeling as if you have flu, fatigue and so on.
If there are a lot of the giant cells in one area it can make the wall of the artery swell and can narrow the diameter of the blood vessel so that blood can't get through as well, reducing the supply of blood and oxygen to tissues on the other side of the partial blockage and this can cause pain if it is bad enough. If it is very severe and the artery is relatively small the flow of blood can be slowed so much or even stopped and there is no blood supply to the tissues on the other side. This may be just for a very short time causing short-lived symptoms or it can be permanent - in some ways a bit like a mini-stroke or a real stroke. This is what has happened when you get visual symptoms: the blood flow to the arteries supplying the optic nerve is reduced and the optic nerve is affected, causing an interruption in the transmission of signals from the eye to the brain and you get either temporary visual signs or, if the artery is totally and permanently blocked your sight goes altogether, usually in one eye first and then, if it isn't treated very quickly, later in the other.
You had the symptoms and went to hospital - and were given a high dose of pred to reduce the inflammation as quickly as possible in the hope of saving your eyesight. It was successful since you say it has "affected your sight" not you have "lost your sight" in that eye. Even with very high doses of pred sometimes too much damage has been done to the optic nerve and the result is blindness which cannot be reversed.
The biopsy was to see if there were any giant cells present in the piece of artery they can look at easily - that bit isn't essential, there are other blood vessels that form a sort of bypass to take blood to the areas further downstream. If they find the giant cells it is 100% certain that what you have is GCA but sometimes there are no such cells to be seen - for all sorts of reasons. They aren't evenly spread along the blood vessels so the bit they look at might not have included any. It needs a good and experienced surgeon to do the biopsy and an experienced pathologist to identify them in the slides they look at. Only about half of biopsies are positive - but then you have a sure diagnosis. Sometimes it is negative but the symptoms were so obvious that the doctor is sure it is GCA and treats it as if it is. Sometimes it is negative and the symptoms were very wishy-washy so they don't continue to treat it as GCA and stop the pred. It sounds very hit and miss and they hope they'll get a positive biopsy because then it does justify exposing the patient to the high doses of pred that are essential to try to avoid the risk of blindness.
Prednisolone is a very powerful drug and it also has a lot of side effects - 82 are listed and there are probably a few more. Some of the side effects are quite mild, others more unpleasant. Some are far worse at higher doses like you are on at the moment and everyone is different in how they react to pred. Some people get only a few side effects and those very mildly, others suffer quite badly. But what I have always said is that I haven't come across any that are worse than the alternative of going blind - because once the sight has gone in one eye it is very common for the sight to go in the other soon afterwards whatever the doctors do. You were lucky that you went straight to a doctor who realised what was going on as every year many people go blind because of GCA that wasn't recognised and treated quickly and aggressively enough.
At the moment you are on a dose that should prevent it getting any worse. Once the doctors are happy the risk is past they will start to reduce your dose of pred. 60mg is needed to start with but it is a very high dose and not a good dose to stay at for longer than necessary so slowly it will be reduced, probably 10mg at a time, maybe 5mg at a time at first, staying at the new dose for a few weeks to make sure the inflammation isn't going to recur. The speed of reduction varies from doctor to doctor so I can't say this is how YOUR doctor will do it but mostly it is something like a month each at 60, 50, 40, 30, 20mg as long as there is no return of symptoms - and that can happen. Mostly because the reduction is too fast. Once you get to 20mg the reduction will slow down, reducing in smaller steps (often 2.5mg) down to 10mg and then even smaller steps (1mg) until eventually you will stop taking pred.
How long that will take is impossible to predict. There are people on the forums with GCA who have got off pred in a couple of years and are back at very strenuous jobs, there are others who took 5 years, having flares and then difficulty reducing the pred. There are one or two who have had far harder journeys but they are a minority. What is certain is that - if the doctor decides he is taking the approach this definitely was GCA - you will be on pred for some time to come. But you have not lost your sight - always remember this was always a possibility and it didn't happen to you.
Pred tends to make people put on weight. For some it just piles on even though they aren't eating any more although pred does make some people ravenously hungry. Several people have found that cutting carbohydrates drastically helps that a lot - it helps prevent the cravings and avoids the weight gain being quite so bad. Pred changes the way our bodies process sugars - cut them out and the effect is less.
It can make you feel hyper - don't rush around doing the spring cleaning! Although the symptoms are much less with the pred you are still ill. There isn't much to see but the illness is still there. Rest as much as you can - even though you may not sleep well because of the pred, plan rest periods where it is possible and give your body a chance to heal. If you are working, GCA comes under disability legislation which helps a lot in terms of your rights and what your employer should or can't do.
Right - that's an awful lot to take in at once! Read it a few times and then come back and ask questions about anything I've missed out or doesn't make sense. Later, if you want them, I will give you some links with other sources of information you may find helpful.
The national charity has a helpline and there are several support groups across the country where you can get in touch with people who have travelled this path before. Whereabouts do you live? Not your address but nearest town will do and someone may be near enough to you for a chat on the phone if there isn't a support group.
And no - you don't sound stupid. There are a lot of healthcare professionals who haven't a clue about GCA and its diagnosis and treatment even though they work in the field - so why should you?
Thank you so very much PMRpro, that was brilliant and I will do as you say and read it through a few more times. I am in Sussex, Crawley is the nearest town, and, yes, if possible it would be great to speak to someone. I am retired so apart from caring for my elderly m.i.l and going to various hospital appointments my time is my own.
and if you look at the left side there is a blue area and third from the bottom is groups - there is a phone no. for the Sussex and South coast group there.
Just read this response and found it helpful, I have felt very like Lin-63 and this has really clarified things. My brain seems to get mushier and mushier daily. I am not coping very well with GCA and PMR, diagnosed dec 2014 also chronic arthritis of the knees and copd from asbestos
The copd I have really recovered well from. lung function test went from 29% to 85% in 2 years, I took up cycling, helped the arthritis as well. But I am lost with these conditions, I seem to be getting nearly all the side effects from the preds and have no idea whether the pain is from the condition or the steroids and have put on 2 and a half stone
I don't even look like me any more let alone feel,like me.
I am hanging on for a hospital apt on the 3rd June Hoping something positive is going to come from it but am loosing hope rapidly.
I am based in Cambridge and would love to talk to someone who is going through this. Is there a support group in this area.
I am not very computer lit, can't find my way round this site very well
Click on the bit in blue in my response to Lin-63 - that is a link that will open the website in another tab. It will look like an ordinary page in a book. At the left hand side you'll see the blue box starting with Homepage at the top. Third from the bottom is Groups, click on that and a list of groups will appear - the second is the contact details for the Cambridge group with a phone no for Dale Hodgson who runs it. I'm sure she can put you in touch with someone for a chat.
I promise you you aren't getting ALL the pred side -effects - there are way over 80! But I know what you mean, it feels like it! Don't build your hopes up too much about the hospital appointment though - because disappointment is such a downer.
You have to hold on to the positives - if you have GCA you haven't lost your sight. If you "just" have PMR the pain should be much less with pred. It is hard but you are not alone by any means and there are a lot of people who've been where you are who will chime in later. It's quiet at the moment because of the Bank Holiday.
My daft upside to taking pred is that my fingernails are much harder and are growing like never before, so my swollen fingers look longer and more slender.
Strange how it affects us all differently. My nails were splitting and cracking and crumbling until I found a product containing some kind of protein and looks like a clear nail varnish. They're fine now, but no thanks to the pred! The upside for me was that an itchy patch I'd had on my back for years disappeared immediately and never came back - touch wood.
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GCA temporal arteritis 
Experience of temporal biopsy
Temporal Arteritis
