Still confused with GCA

Hi all looking for some advice and clarification please.....I saw my consultant today who says my CRP is still 10 where it has been for about 10 months apart from a few months ago when I had visual problems and had to increase my pred to 30mg for a few weeks. I've escaped the decision for now to go on meth or az as he told me to stay on 10mg for 3 months till next appointment, he also said as I had gca for 3 years it is likely I will have it 'for life' is this really so?? Also my white blood count is raised and has been for a while also my esr, so my gp is sending me to haematologist really confused on this as consultant said pred can cause raised levels. How high can the white cell count go without causing problems? feel really low in mood as this morning ;(

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  • Hi suszannah,

    Sorry you've come away from Consultant more confused, but don't think you're alone in that!

    CRP does seem a bit high, but as he doesn't seemed perturbed about that, fair enough - mine was only tested in the first year or so, then no-one bothered - so neither did I.

    Your ESR can be raised by other factors than the GCA, so it's probably good idea by your GP to get it checked out - although it's just another appointment to go to! Can't answer your question about what level you should be concerned, sorry, but sure someone will.

    As for whether you'll have it for life or not, don't think anyone can say that for certain. It does seem that GCA goes into remission, or burns out more successfully than PMR, but maybe that's a myth, because less people suffer from it , or maybe because it's the high doses of Pred. All I can say is - I think mine has for the last six months at least - and although I am still trying to get off the Pred slowly I haven't had anything that would indicate that the GCA is still present. I hoping so anyway.

    There are others on here who have successfully come through GCA and I'm sure they respond, but I guess it must be in the back of your mind for a long time - has it really gone?

    Do hope your next few months at 10mg stabilise things.

  • Thank you for the input ....just feeling totally fed up of seemingly getting nowhere with this journey and nit getting answers from the consultant.....all in all not a good day lol

  • NO!!! There are several people on this forum who were on pred for GCA for 4 or 5 years and still got down to zero and have remained there for a few years. Celtic and Sambuca spring to mind for a start.

    Of course your white cell count is raised - pred does it almost always. If your CRP and ESR are both slightly raised then it would suggest that there is unmanaged inflammation lurking somewhere and a slightly higher dose of pred might deal with THAT! Especially as it did when you went up to 30mg. Three years is not that far into GCA, particularly since you were led into a flare by reducing the dose too far which was not then fully cleared out and you have been led into a nearly-flare again by being told to reduce too far and too fast.

    Why can't they join up the dots?????

  • Thank you for the reply, I'm just feeling so low as I don't seem to be getting anywhere as soon as I attempt to get below 10mg I get visual problems...it took a lot to convince me I had gca in the first place, I sometimes get slight tenderness on my scalp area but it usually passes and luckily I don't get headaches I do suffer with dry gritty eyes but put that down to reading a lot and on phone and ipad. I do have constant sinus problems and may need an operation on that and also an ankle problem, I had hip replacement 5 years ago so don't know if anything there would contribute to my esr readings. ..to be honest I don't like the rheumatologist and I think the feeling is probably mutual as I gave him a hard time at the beginning of this journey, but there is no other consultant I could go to. I feel tired and iritable a lot so not sure if that is gca/pmr or pred and he didn't really give me much of an answer on those points

  • In that case you need to look for an alternative - and a good rheumy is worth a journey, believe me. Where are you? Maybe we can suggest an alternative.

    My other thought is that it ISN'T just GCA. The sore gritty eyes is very likely Sjogren's or sicca (Sjogrens without antibodies) and would benefit from artificial tears. If you have constant sinus problems there are forms of vasculitis that involve the sinuses. In fact, both could be part of the overall picture but it takes a very good rheumy to put 2 and 2 together it seems! But dry eyes are common with vasculitis of all sorts.

    You have an autoimmune disorder - of course you feel tired (fatigued), that is part of autoimmune disorders and so is irritability - and both can also be laid at the feet of pred.

    And to be frank - being on 10mg pred after 3 years of GCA is something a lot of people would take and run. I'm on 10mg - "only" PMR which I've had for 12 years and I've been on pred for 7 of them. I've been down to 4mg but had a flare in the early spring so back to 15mg and reducing again. I don't care as long as I feel well enough to enjoy life. That is my prime aim - and, luckily, my doctors take the same view.

  • Thank you :) I live near Pontypridd South Wales, Cardiff is about 15 miles away. The ct scan I had showed I have a large air sac on one side and it has pushed the septum inside at the top over due to so many infections over the years.

  • Fair enough - if you've had a CT that makes it fairly certain!

    Where are you seen? At the Heath or in Pontypridd? Someone said recently their very good rheumy was leaving and I'm sure they said he was going to Cardiff - she was hoping to follow him. Certainly I know there is a dearth of decent doctors (of all sorts) in that area - I have a friend who really struggled to find someone with their brain in gear!

  • I see him in the hospital in Pontypridd he also works at the Royal Glamorgan in Llantrisant....just gave no faith in him...and I think he is the only.

  • I wonder if that is the same one my friend saw - he was hopeless and got several things VERY wrong. Luckily she saw a neurologist who straightened out a few "facts"!

    You can ask to be sent anywhere - it's just up to you for travelling but getting to Cardiff isn't too bad.

  • I also get constant sinus problems but the doctor says they are not infections, just swollen blocked sinus but I think they are GCA Related. They then cause painful stiff neck and headaches making it difficult to know if it's a flare

  • ,Suszannah I am in the US. Just to reiterate some of what you have already heard I too have had high white count I have GCA and started on 40 mg of prednisone in July 2015. I am down to 12.5 mg and I too have had dry eyes Mine started 25 years ago. I go to the West clinic in the US called Bascom Palmer Eye Institute. I have developed an eye disease and the doctor is just waiting for me to get down below 10 to do surgery. They have developed Serum drops here where they take the serum from your blood and make eyedrops out of them. It is helping me as I wait for this surgery. It seems that the oil in the glands have gotten sick and do not function well on their own. My surgery is unrelated to that. My white count was normal for the first time in 13 months. I'm sure that is going to vary. I also had PMR and was on prednisone for three years and was fine for a year before I developed GCA. I was completely off steroids for one year. I would bet this is forever disease but I think remission as possible and I look forward to that while trying to live my life with GCA and it's accompaniments like diabetes and herpes, muscle atrophy and of course the dry eyes got very dry with prednisone. On the brighter side with the thin skin black and blue and purple marks I still wake up every day and find a reason to laugh despite my doctors. I have fired five rheumatologist. The problem is they don't live in our bodies and I think there is more GCA in Europe than in the US. Here their idea is to just get us off the prednisone and that way of thinking is wrong and harmful. So if you have to stay on low-dose prednisone so be it. Sometimes the adrenals don't wake up anyway and we have to stay on low-dose. Good luck to you and if pro should happen to read this, thank you pro I don't post a lot but do read most everything.

  • Thank you for reply, I will look for alternative rheumatologist but I think they are thin on the ground in this area, I would just like to have a few days when I feel good enough to want to go somewhere, everything is just a chore at he moment I use to be such an active person I just can't get used to being do down

  • It gets better I promise

  • Thank you all for your input, I know there are others a lot worse off than me but I would just like to feel normal once in a while lol

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