Hi I have just found this site. I have been suffering with constant severe headaches for the past 9weeks, around right side of temple and

spreads to same side of head and sits there all day. I get really sore back neck and shoulder pain, ( i thought it was my pillows so went out and spent fortune on good ones lol ) pain in hips and down my leg ( all right side) night sweats, weight loss, ( which the steroids have sorted... DAMN!) my eye sight is ok I had these headaches a few years ago and was put down to cluster headaches, but not long after i did have a heartattack .. Pain was so bad i took myself off to A&E (2 weeks ago) they put me on 60mg of steroids and said they think it could be GCA , blood test came back 'acceptable'. The dose of steroids helped a bit but now down to 40mg. I feel they are dragging their heels on all this, as i am taking meds but not got a clue what for ! I go for biopsy on 8th April not seen a consultant yet either.. are these the usual symptoms for GCA? Has anyone had a biopsy as i am a teensy bit scared ! :(

19 Replies

  • Hello Jan and welcome!

    Night sweats and weight loss were among my symptoms when diagnosed with GCA and the fact that you say those have resolved with the 60mg steroid dose, does sound as though the GCA diagnosis is correct. The reason you have been given steroids at this high dose is to protect your eyesight which can be at risk from giant cells forming in the temporal artery leading to the optic nerve at the back of your eye. I didn't have a biopsy but I'm sure there will be many people replying following their experience with biopsy to reassure you that it is a straightforward procedure and nothing to be even a "teensy bit scared" about. It does need to be carried out within a few weeks of starting treatment s the steroids will be controlling the inflammation and therefore eradicating the large cells. It isn't a 100% foolproof test as the large cells can escape the tiny area biopsied. If your blood tests showed raised inflammatory markers at diagnosis then these should be repeated before any reduction, and you should be experiencing a great improvement in your head pain - I do hope so.

  • Hello Jan

    When I had my biopsy, they gave me a local anesthetic [ injection ] at the side of my head/face. That will sting a little, but once that kicks in you wont feel any pain.

    The procedure may have change since I had my done 14 years ago.

    Good luck

  • I had biopsy done Oct last year. Nothing to it, didn't even feel the local injection too bad. It was less painful than a visit to the dentist. I made my own way for mine as I only had 1 he notice, but managed to drive myself home afterwards. Really nothing to it. Cheers Runrig :-(

  • Hi... Thanks for the reply.. had a few replies that are saying the same... Hope everything worked out well for you :)

  • I agree with the others. The only thing I would say re the biopsy was that I found the noises made by the procedure very off-putting. I felt strong pressure while he was doing it too - not painful though

    . I think maybe if I had been prepared for the sounds I might have been less bothered by them, that is why I am telling you.

    Very best of luck. Hope you see a consultant soon, you should do.

  • Hi allotment-lover, Jan and all, am amazed that most had local anesthesia. The anesthesiologist asked me which I preferred and I said, "local". Fine, they put a needle in my vein in my arm and I was "out" in a few minutes. Four hours in ICU as I "came to". ? ?

    Agree with most, it wasn't too bad, even after the first few hours. I probably was getting over the anesthesia. Sorry allotment-lover about the noise and pressure. I obviously didn't feel anything. ? ? Possible situation with -- England does it this way, U.S. does it this way. ? ? I wanted the local and there was nothing "last minute" unusual, that would have indicated, "we better put her under". - - - -

    Was so concerned with the GCA afterwards, I didn't ask about the anesthesia change.

    we all survived the biopsy, which is good. best, Whittlesey

  • I don't remember any noises. I actually enjoyed my biopsy! I had a local injection and had a lovely surgeon who chatted away as he carved - and an equally nice male nurse to hold my hand! All on the NHS!

  • Jan 1961

    If you have been on a high dose of steroids for more than a week, the biopsy won't show anything. The pred will have broken down the cells. Quite often the biopsy is negative anyway and they need to work with the medical symptoms.

    Go to either the PMR GCA uk main website and read the BSR Guidelines on Diagnosis and Treatment of GCA, or alternatively follow this link. pmr-gca-northeast.org.uk/as... which will take you directly to those guidelines.

    You need to find out as much as you possibly can about GCA as it is part of the Vasculitis range of illnesses and as you have had a previous problem with your heart you need to see a Consultant asap. Go talk to your GP and see if he can arrange an earlier visit, or are you still under a Heart Consultant and can get to see him/her earlier.

  • The dose of pred you have been on and waiting until the 8th of April means there is very little likelihood of the biopsy being positive even if it is GCA - that will be after a month of high dose pred. Only about half of patients who do have GCA get a positive biopsy anyway and the chances are said to fall by 10% for every week on pred prior to the biopsy.

    They certainly are typical symptoms of PMR and possibly GCA - but the real question is how you responded to the pred. Did the symptoms improve dramatically (by 70%) within a week or less?

  • Hi Within a week the headaches got better.. they were still there but not as fierce.. so i was dropped to 40mg a day.. but within 2 -3 days back the headaches came and more aches and pains followed.. I went to docs again today and they have put me back up to 60mgs.. I am so confused by it all as i have not seen a specialist yet ( that is next week) to even tell me what he thinks it is !! Just feel so let down and left to get on with it on my own and taking all these meds for something i dont know i even have yet !

  • This is a paper aimed at GPs and non-specialists regarding the diagnosis and treatment of GCA:


    It is fairly easy to read - but for you the most useful bit now will be the reduction suggestions.

    If you were reduced from 60 to 40 after a week I'm not surprised the symptoms came back. I think Kirwan's reductions are a bit steep using 10mg at a time, going down 5mg at a time, another 5mg after 2 weeks if you are OK is better and the same speed in the end.

    I imagine they asked a rheumatologist at A&E but it is such a shame that you weren't able to be fast-tracked as Kirwan offers from his department in Bristol, Southend have also done it and for them it has been successful as big departments who probably see quite a few cases in a year.

    Hope this helps - but above all, hold on to the fact that if pred improved the symptoms originally it increases the suspicion it may be GCA and being treated as you were will have avoided the risk of going blind. Once it's gone - it's gone. No going back.

  • Thank you for this.. I am going to take it to my surgery and let them have a read! I have to say I have more support from here than anywhere else.. Thanks everyone :)

  • Like this paper very much. Believe it will be a big help in getting GCA and PMR recognized and diagnosed early. With GCA. this will lead to much less vision loss and blindness. Thank you for posting this. I will copy it, give a copy to my doctor and may mail one anonymously to Mt. Sinai Hospital in midtown New York, so that another GCA person, does not have to wait 4 long months, suffering with this disease, and not knowing, because "there aren't enough markers". Thanks for posting this very well done paper.

  • My dr did it as out patient surgery . He put me out and when I woke up it was all done . Nothing to really be scared about and needed to confirm diagnosis and make sure treatment is working .

  • Hi... I don't really know where to start.. I feel totally let down by health and just left to it..This all started with me early March.. i just had biopsy on 8th April .. but have been on 60mg's of pred for weeks and i will be lucky if it shows up.. they are all saying the symptoms i have is pointing to GCA but i am sick of hearing you're to young to have it!?? S what do i have then and why am I on 60mg's which is making me unable to cope during the day or sleep at night !??? I am also on 800 UI of vit D 5 times a day too.. which by now i thought i would be feeling like superwoman! The tiredness is overwhelming .. I saw the rhuematologist too on the 8th April.. oh you dont have PMR you're too young its wear and tear???? How come all my joint pain has gone since i have taken 60mg's of pred.. well unnless i pick up the hoover the hip and leg pain kicks in unless i rest and the pain in legs at night arrgghh.. This diagnosis of wear and tear was without any tests, but when i read up on it all i have all the classic symptoms but keep being fobbed off as i not of age to have GCA/PMR ....I really don't know where to turn next and finding it almost impossible to cope and get someone to treat me for my symptoms and not my age :(

  • Jan

    "I saw the rhuematologist too on the 8th April.. oh you dont have PMR you're too young its wear and tear????"

    In that case, has he not suggested an alternative diagnosis for your pain, or at the very least further investigation, such as a scan perhaps? If not, then it isn't surprising that you feel "let down". It's unlikely after so many weeks on high dose steroids that the biopsy will return a positive result.

    You mentioned in your initial post that your head pain improved on the 60mg starting dose which many medics accept as confirmation of their diagnosis - unfortunately the big reduction to 40mg was a step too far so obviously lost control of the inflammation again. Continually Increasing up and down through these high doses leads to a yo-yo situation which can often cause difficulties with future reductions.

    I think if I were you, Jan, I would be seeking a second opinion with another rheumatologist - my first rheumatologist failed to diagnose me throughout many appointments and as many months.

  • he hasnt suggested anything apart from painkillers.... i cant function on these tablets at this level i dont know why i am taking them as its all guess work at the moment.. just so fed up with it all.. i know the pred causes many problems and they are starting to kick in... Am i too young to have this?? i just keep thinking if they treated Jade Goody on her symptoms and not her age .. maybe just maybe she may still be around... sorry to be very negative but i am very anxious and scared i guess...

  • Hi Jan1961, I was diagosed with GCA in May 2012. Had horrific headaches (worse than migraines I had been suffering with for about 9 years), some vision problems, just felt bad, like the worst flu. At first they wouldn't do a biopsy for GCA. I had a high c reactive protein, but they said I was too young and had "only one marker", well if you include the headache and vision problems, that's 3. My mother had it and passed away 4 years after the diagnosis of a heart attack (74 years).

    My neuro surgeon recommended a biopsy, they did one and there "giant macrophages" with the cell walls broken, I had GCA.

    The biopsy itself, operation was ok. They used anesthesia and I woke with some little pain on the left side of my head. They gave me percocet. I stayed two days in the hospital. Would ask for that, in the beginning. I didn't really feel like jumping and taking the paratransit home. I felt sick. They gave me 80 mgs prednisone by injection, but I had some vision problems. Two days later, I signed the discharge papers and waited for paratransit. Very little head pain from the biopsy.

    Had the visiting nurses for 4 weeks, which included an occupational therapist who helped with the small vision loss in my left eye. He was very good and I still do the exercises. Have some depth perception problems, because of differing vision in each eye. He was very good. The nurse came and tended to the wound, really well and it healed well, with no pain and your really can't see the scar.

    The biopsy isn't really a problem.

    It is important to find out if you have GCA. They can treat it if you have it.

    Good luck with the biopsy and wish you health, as you recover. all my best, Whittlesey

  • I do sympathise. I have had headaches ever since I have had a head but this time I started with a stiff neck and then the headaches. My husband doctor thought it was referred pain from my neck so I saw his partner who confirmed the same and prescribed 2mgs Valium and massage. Like you sorted out my pillows, tried to sleep differently . I went to physio who said my neck was fixed and I massage and exercise. She said I was improving but I was getting worse and mainly in bed, the pain in my arms was so bad I couldn't lift myself up the bed. When my legs started to get stiff I had had enough and had my blood done with very high ESR and CRP. I was put on Prednisolone 40 mgs and was symptom free that evening. I saw the rheumatologist 4 days later and she diagnosed GCA, my levels have dropped which is encouraging.

    I have an appointment to see the ophthalmologist on Friday so have not had the biopsy. Like you I find it scary, watched it on U Tube and need to be convinced it's necessary as I have read it's inconclusive particularly after treatment had started.

    I was hugely relieved to find the forum, it's so helpful to have others as I have found it all a frightening experience. I also recognise it's a very complicated disease which even confuses the professionals as it seems there can be differences for all of us. The main thing is to get the right treatment for you.

    Hope this helps, best wishes.

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