Very confused Chessington Newby

Hi everyone

Went to have a meeting (I thought) about plans for a GCA biopsy today. The neurologist I saw was rushed off his feet and briefly said something like 'second thoughts, it could be migraine...we are going to half your steroid this week, half again next week and then stop.' So I'm down from 60mg Pred to 30mg from tomorrow.

I was very shocked as I thought it was still being looked at as potential GCA. He then said it may be worth doing an ultrasound soon. Confused.com!

Has anyone experienced a quick turn around in thought under a week?

22 Replies

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  • No, never and No medic should treat you like that, however busy s/he is. That is a downright cavalier attitude and your sight is precious and it is yours to lose, not theirs.

    Follow this link and read, and you can download it, pmr-gca-northeast.org.uk/us...

    BSR & BHPR Guidelines for the Management of Giant Cell Arteritis (GCA

    These guidelines were prepared by a working group consisting of members of the rheumatology and general practice communities, together with patient representatives. They are now officially accepted as BSR guidelines.

    Now when you have read them and you have ticked off your symptoms and you match some of them. Just go back to your GP, tell him what has happened and do not reduce until you get a satisfactory answer and you are confident with that answer. I would take a husband, wife, partner or friend with me to that appointment. Sometimes it is difficult to remember all you want to say and the responses. They will also fight your corner if necessary.

    The next thing I want to answer, but cannot, until you give us the information is how long have you been on 60mg?

    This answer is crucial as if you have been on it for a while, a 50% drop is too big. Your adrenals glands have been knocked within days on a high dose.

    My friends daughter was put on 60mg of pred for another reason and then they just stopped it abruptly and she was quite ill. That is just hearsay as far as you are concerned

    It worries me that you have been told to half the dose to 30mg and then seven days later drop to 15mg and I assume stop after seven days..............

    Now I could be wrong and with a bit of luck, DL or PMRpro will be along and reply.

    I am not a medic at all, just someone who had GCA for 5 years and is now coming up to the start of 7th year of remission.

  • I was diagnosed by an ophthalmologist at St.George's Tooting last Thursday night and she had me put on 60mg Pred immediately, after discussing my symptoms.

    Thank you for downloading the guidelines.. my husband has just said we must insist on seeing my GP tomorrow to discuss fully the implications etc of today, mainly the large drop in dose. x

  • Thank you for your reply.

    Opthamologists are experts at spotting the symptoms of GCA they are trained in it very well as it concerns sight.

    A small aside, after I had been diagnosed I went to the opticians to get my current glasses changed to re-actolite rapide. Within 5 minutes she stopped and said, I must ring the hospital and you must go straight away. I had not told her I had been diagnosed with GCA. She knew and I had not told her anything.

    I would make sure that you tell your GP that is was an opthamologist who diagnosed it.

    Take the guidelines with you, your Gp has probably never seen them, they are not issued to GP's. They are issued to Rheumatologists by the BSR (think like the BSR is a Trade Union). GPs get their stuff from NICE and it takes a long time for NICE to approve issue. Just the way the system works.

    I(t is now 7 seven days today. As I am not an expert at all, you really need to get some good advice as to how to come down. It is quite possible that because it is only 7 days, you would be able to drop 10% at a time (do the math).

    Please let us know how you get on, as we are all learning from new situations and good luck. I really hope it is 'a migraine' but..................

  • This is not good enough MelodySue. He certainly wasn't focussing on you that day, for whatever reason. He may have given you the jist of what he wanted to say but you deserve better.

    A rapid decrease in steroids like he describes would make you feel absolutely awful. At the very least you would need to taper after 30 mgs. Do you have a good GP? If so maybe they could pick up the pieces and get proper medical advice for you.

    What alarms me is that no one can tell you that you definitely have not got GCA, even after a biopsy. I am not clear what an ultrasound would show him either.

    I have possibly missed your previous posts but why aren't you with a Rheumatologist?

  • Just a quickie, Neurologists deal with most of the Vasculitis family and sometimes people get referred to them.

    Rheumatologists historically dealt with 'rheumatics' and when GCA was named(?) they just carried on...............that was the explanation I was given.

  • Not sure why not a rheumatologist yet...I was seen by the general medical triage doctor (as a follow up from the diagnosis through CPU to the ophthalmologist) this morning.

    I'd been told to go and find out about the GSA Biopsy and then she was called away and a young neurologist turned up and said it may be migraine instead ...and the cutting down.. then stopping of the Pred.

    Thank you for your replies tonight Jina and Jane. Feeling quite scared xx

  • I just wondered if a referral to a Rheumatologist might be a way round this and to obtain a considered opinion of your health condition.

    I hope you will be in good hands now. I am sorry this has frightened you.

  • I think you have received some very good advice to go back to your GP with the guidelines and ask to be referred to a Consultant Rheumy immediately for clarification. The neurologist who said " on second thoughts could just be a migraine " I believe like others was just behaving with a very cavalier attitude. Don't be afraid, you are on a good dose to keep you safe, just go back to your GP with support ( sounds like you've got that with your husband) and insist that you want to sort this out with a Consultant Rheumy before you do anything. If necessary go privately- that's what I had to do for initial diagnosis. You might want to post what area you are in and folk may be able to recommend a Consultant for you to see. Keep us informed. X

  • Hi,

    Others have given good advice, so I won’t say anymore other than, if you were diagnosed with GCA in good faith, and an ophthalmologist is the person will the experience and knowledge to do that, then until it has been proved conclusively you don’t have it, a reduction as suggested is foolhardy.

    Impress upon your GP, if he’s not already aware, that such action could jeopardise your sight, and you are not prepared to follow neurologist’s direction until a second opinion is received.

    Good luck, and please keep us informed

  • Oh dear, Sue, I'm not surprised that you are both confused and frightened. Very conflicting advice if on one hand he suggests it may be a migraine and on the other suggests "it might be worth doing an ultrasound soon". What a contradiction in terms. I see you are in Chessington. There is a wonderful rheumatologist not far from you in Chertsey: Dr Rod Hughes, St Peter's Hospital. Others who contribute to this forum are patients of his with some travelling many miles to see him. I went into remission from both PMR and GCA under his eventual care after another rheumatologist failed me abysmally. I do hope you can get confirmation one way or the other and soon - if it is PMR/GCA, we have a support group that meets every couple of months in Chertsey. Lots of good luck wishes.

  • Thank you so much for Dr.Hughes info. We have decided to go private and hope to get to see him soon x

  • Sue, I can assure you that it will be money well spent, if my experience and that of many other PMR/GCA patients is anything to go by. Dr Hughes is involved in research into our conditions and is, in fact, mentor to the support group I mentioned previously. Good luck with getting an early appointment but, if, in the meantime, you have any worsening head pain or sudden problems with your vision, don't hesitate to go straight to A&E.

  • Sue, I was referred by my GP to Dr Hughes on the NHS and have an appointment on 25th October. Family and friends have been persuading me to see him privately, so 20 minutes ago I phoned the private secretary at Runnymede BMI Hospital in Chertsey, Surrey and have an appointment for Monday! I'll be self funding, so the cost is £220, which I think is worth it to be guaranteed a 30 minute appointment with the man himself.

    Good luck!

    Direct line: 01932 877 831

    Email: jody.evans@BMIhealthcare.co.uk

  • As I mentioned to Sue, I'm all set to see Dr Hughes on Monday! I was going to attend the Chertsey support group on 3rd October, but couldn't make it in the end, but I'm hoping to make it to the next one on 5th December. Would love to meet some of the group!

  • Hi Claire, you will, of course, be most welcome at Chertsey whenever you can make it - a really lovely, friendly bunch! I don't know whether you are already aware from the website, but the meeting on 5th December is annual Christmas party time for the group and, because a buffet lunch is being provided, orders and payments were collected at our latest meeting last week. If you find that you are able to join us, please let me know (pmrgca.surrey@btinternet.com) so that I can add you to the food order list. Meanwhile, good luck with your appointment with Dr Hughes on Monday - I'm sure he'll more than come up to expectations!

  • Nothing much to add except to say that if it were me I would be informing my GP I wished to be referred to Dr Rod Hughes at Chertsey as an emergency (not urgent, EMERGENCY). That means a phone call by your GP at the very least.

    If you can afford private that would be perfect but you would then usually be added to the NHS list.

    But that response by the neurologist was disgusting - and why a neurologist anyway? GCA is managed by eye specialists, neurologists and rheumatologists in various countries - neurologists are the least common and, frankly, in my experiences on the forums it is just as well.

  • Bless all of you for your replies and encouragement. I spoke to Dr.Hughes secretary this afternoon and I have an appt on Tues afternoon. X

  • Hi MelodySue

    How did you get on? I saw him on Monday afternoon (I wondered if I might have seen you there...), but I have been left feeling very confused and bewildered... He was lovely, but after one year of being under the "care" of the rheumy in my local hospital and being told by her that I have PMR, as initially diagnosed by my GP, he thought I possibly didn't actually have PMR.

    He thinks I might have a degree of PMR, but I'm more likely to have rheumatoid arthritis and/or Lupus (SLE). I went away on Monday clutching a prescription for Hydroxychloroquine, a drug used for Lupus. I've now got to check the potential side effects.

    This is a whole different kettle of fish...!

    At least I'm all lined up for a DEXA scan and further blood tests to look at the possibility of Lupus in more detail, but I have to say that I'm a bit shocked by it all! For one thing, I'll miss the PMR/GCA community who have kept me going through all this.

    I hope you left the hospital feeling satisfied and with a decent plan to take things forward for you.

    Best wishes

    Claire

  • You don't have to go away, we're very broadminded and if the problem is one we have we can also offer tips - but the LupusUK forum on HU is a lovely group too. I lurk there too when I have time.

  • Dr Hughes scrutinised the results I'd brought him, and he pointed out to me that the Anti-dsDNA Antibody was 11.0 (normal range 0.0-9.9 IU/ml) and the ANA Panel was positive, which are apparently indications of Lupus, although not conclusive. The other antibody tests appear to be within normal limits. This had never been mentioned to me by my previous, somewhat lacking rheumy. I've Googled both tests, and am now a little bit more enlightened. He's going to repeat the tests at my NHS appointment.

    I'd love to continue "lurking" and even contributing on this site, as I've found it so helpful, especially your input, along with DorsetLady's, and of course so many other excellent, kind people who are so keen to offer their support, knowledge and encouragement.

    In the meantime, I might have a little snoop on the Lupus UK forum and hopefully learn a little more... Sadly, my recent nursing background is neuro, continence/urology and colorectal/stoma with minimal rheumatology.

    Dr Hughes was really kind and gentle, and I would recommend him to anyone who is able to travel to Chertsey and who can persuade their GPs to make a referral.

    I'll keep in touch, as he thought that PMR might still be contributing to the overall picture. I just wish these autoimmune conditions were more straightforward to diagnose!

  • Hi Claire

    Oh wow what a turn up, I can imagine a little bit if what you feel with the different diagnosis and all that this implies.

    Yes I saw Dr Hughes on Tues afternoon. By the time I saw him, I had had the ultrasound which had ‘ruled out’ signs of GCA but he does think I have signs of PMG and occipital migraine.

    He was very reassuring and advised me how to taper off the very high doses of Pred that the hospital has me on. He also has advised me to increase the propranonol (for anxiety post the subarachnoid haemorrhage last year) as I decrease the steroid to help cope with the migraines Im getting..which originally were thought by the Opthamologist to be GCA.

    Im feeling happier now I have seen Dr Hughes and feel I have a plan. Do hope your scan goes ok Claire, this is all so new for you but hopefully with the docs’ support and everyone here, things will feel more in control. Huge hug X

  • Hi MelodySue

    I'm glad you found Dr Hughes reassuring. I liked the way he wrote it all down for me in nice handwriting (unusual for a doctor!), and then gave me the papers for me to take home and study. I hope you also took away written information, as it really helps when you're thinking about things when you get home. Sometimes you don't take it all in at the time, so it's lovely to have something to refer to, especially if it's a complicated plan.

    Will you be able to continue seeing him on his NHS list?

    I've been feeling a little shocked by it all, but I want to stay in touch on this forum as I feel I'm made "virtual friends" who I look forward to following and supporting. Even if it is just a friendly virtual hug or a supportive word to keep someone going through the pain and stiffness.

    Take care MelodySue (are you Melody or Sue?) and thanks for your support. I'll be thinking of you. Keep posting on here, as we'll all be wanting to know how you get on.

    Claire xx

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