GCA found in Aorta

Hi. I am new to the group and was wondering if anyone has had a similar diagnosis of GCA. In Jan 2015 I went to GP with consistent burning head pain, left side and back of skull. She noted that I am RA+ (with no clinical symptoms) and immediately suspected GCA. Put me on 80mg Pred and referered me to Rhuemy. CRP was at 35. Pain went in about 3 days. Had Ultra Scan of temples and neck and Temporal Biopsy and that was clear negative. Rhuemy said I did not have GCA. Tapered on Pred and when I got down to 10mg the pain returned. Refered to Neurology and put on Pregabalin had MRI Scan and Neurology gave the all clear, also the Pregabalin did nothing for the pain. Back to Rhuemy (increase the Pred and the pain went) and they Ultra scanned my armpits and did a PET CT scan. GCA detected in my Aorta. Continuing on Pred... Tapering.. And hopefully can get off Pred and maintain on MTX. Has anyone else been diagnosed GCA in Aorta? It baffles me as the symptoms were head pain. Thanks

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  • Carol, it is possible to have GCA in spite of a negative biopsy due to the fact that the large cells they are looking for can escape the tiny portion of artery removed. However, that test should be carried out within a week or two of starting steroids as the treatment will have dealt with any large cells. The fact that your pain disappeared on the large steroid doses and returned when you reached the lower 10mg dose does more or less confirm GCA. I haven't come across anyone with GCA diagnosed in the aorta so I'm sorry but I'm unable to help you further. However, I think you need to consider tapering the Pred very slowly rather than aiming to "get off" it. It remains the most tried and tested treatment for GCA.

  • Thank you Celtic. Yes I had the biopsy done about a week after starting Pred. And yes agree the Pred works fabulously and possibly has saved my sight but like so many others I have awful side effects. I should have said my long term aim is to "get off" my Doctor has me on a slow taper now. Currently on 12.5mg for 3 weeks, then 10mg for 4 weeks and then a drop of 1mg a month. Hopefully slowly and surely will work for me. Thanks again for your reply.

  • Welcome to the site. Just to give you some idea of the speed at which I have reduced my pred. Started on 60mg 2 years ago and have got down to 8mgs plus MTX. That's TWO YEARS! Can't get any lower without recurrence of symptoms. Inflammation in your aorta is very serious. Unfortunately one of the complications of GCA is an aortic aneurysm - which you can do *ugger all about, to be brutally honest. I would be in no hurry to get off Pred and have untreated inflammation in my aorta. It is still early days for you. You sound as though you have had marvellous, expensive investigations. I am envious. At the National Vasculitis conference in April this year we saw some PET scans of people with routine GCA (i.e. symptoms in their temporal arteries primarily) and they all had large vessel inflammation (asymptomatic) elsewhere. It is a systemic disease.

    I wish you every success in dropping your Pred. You might be one of the lucky ones who gets off quickly.

  • Thanks Saxjody. Yes I was lucky to get the tests and investigations done. My doctor is Professor Dasgupta who I believe is an authority on GCA and is also involved in much research. i think he was very interested in my mismatch of clinical symptoms and test results and was determined to diagnose fully. I understand about the Pred. I hate it, but I do appreciate that it is probably keeping me alive!

  • Be very careful dropping by as much as 1mg a month from the 10mg point. Every drop you make at the lower doses is a larger percentage than the previous one and can become too much for the body to handle. Certainly, I managed 1mg a month reductions from 10mgs down to 5mg but then everything started going pear-shaped and by the time I reached 3mg I was heading back to my bedbound days prior to diagnosis. I had to return to 10mgs to control the body pain - luckily the pain in my head/temple area remained under control.

    We are all different and therefore can respond differently to both the illness and the treatment, but one thing many past/and present sufferers have experienced is that a very slow reduction process is key to success at the very low doses, especially below 5mg, for instance reducing from old dose to new dose on just one day of the first week, two of the second week, three of the third etc, taking about 7 weeks to taper between each dose. Providing the inflammation remains under control, it is very rare to experience much, if anything, in the way of side effects at the low doses below 5mg.

    Hope all goes well for you.

  • Thank you Celtic. Yes as I get lower I will take great care x

  • I have GCA in aorta and all big blood vessels. I am on Humira and Methotrexate, started in mars. I am going to take some blood tests next week and have a telephone meet with my gp two days after that. Cross my fingers my tests are good, if so I probably have to do another Pet Scan and check. Good luck!

  • Fingers crossed all goes well for you x

  • Hi evafel,

    Sounds like u lucked into some excellent physicians. Congrats!!

    Your GCA treatment plan interests me...

    Several questions for you:

    Are you also on pred?

    Is the combo of meth/humira controlling your GCA symptoms w/o pred??

    Are u on oral meth or SQ?

    How long?

    How are side effects?

    I would be very interested to hear what ur next pet scans show.

    Wishing you good luck!!!

    Zoe

  • Hi No I'm not on pred, I had too much side effects.

    So far the combo meth/humira is much better for me than pred. I feel a lot better on that. The only side effects I have so far is I sweats a lot at night and I have some trouble go to sleep and wake up after a couple of hours and have a hard time to fell asleep again.

    I take my meth SQ, tried oral but felt so sick to my stomach on that, works much better with SQ

    I have been on Meth sense mars this year and started Humira about1,5 month ago.

    I will let you know how my blood test are next week!

  • Crossing fingers and toes for you! Thank you so much for sharing all that info too. Zoe

  • Thank you, I wish you all the same :)

  • Int eh Guidelines published by the British Society of Rheumatologists (can be found on there website, the NHS website and also PMR GCA uk North East and PMR GCA UK

    You will find that all GCA patients after two year should have both the aorta and pulmonary arteria scanned. Giant Cell Aretitis can and does occur in other parts of the body, it s the most commonest form of Vasculitis. The most common way it presents in in the Temporal Lob area. All PMR patients should be told which signs to watch out for and all GCA patients should familiarise themselves with the Guidelines. Knowledge is Power.

    MTX is just a steroid sparing agent, it does not control Vasculitis as far as I have been told. So please discuss this with your Medics.

    MTX is brilliant for RA and once you get down to, I think 10mg of pred then MTX can be introduced. Again discusss with your medics.

    I had the scans on the Pulmonary and Aorta at 2 years absolutely clear.

  • Thanks for the info Sambucca.... I will have a look at the Guidelines now

  • How very interesting!! Those Guidelines were written by my doctor Prof Dasgupta!! It's a pity he doesn't practice what he preaches. Maybe he needs to spend more time talking to his patients than writing papers. 😡

  • Oh dear, Carol, it sounds as though you haven't had a good experience. In defence of the Prof, the PMR guidelines have, in fact, recently been updated and hopefully the latest edition will be in circulation before too long. Updating of the GCA guidelines is also in the pipeline.

  • Hi Caro12line,

    Would agree with both Saxjody and Celtic regarding reductions. Many people find that once you get to single figures, you really need to go slowly, I.E. reducing by 0.5mg at a time rather than 1mg. The ideal reduction is no more than 10% at a time. It is not a race to get to zero, it's a matter of keeping the inflammation under control - at all times, and if you are in any pain, wherever it might be, it is not controlled.

    Although your GCA may not be typical - but who's is - the fact that only Pred touches the pain confirms it is even though the biopsy was negative.

    I also started on 80mgs in April 2012 (having already lost the sight in one eye due to having undiagnosed GCA for some considerable time) and now am down to 4.5mg, so please don't expect it to be a quick fix.

  • Hi DorsetLady. Thank you. I am so sorry to hear about your sight. I was very very lucky, I went to GP with constant burning head pain and she picked up on it straight away. Put me on 60mg Pred and all the recommended preventative meds. I saw the Rhuemy within a couple of days. That was Jan of this year. I fully understand about the need to go slowly but feel the Pred is doing so much harm to my body I just want off. But I know I must taper gently. The good thing is I am under the care of the same GP and my Rhuemy ( Prof Dasgupta) Also my GP told me that whilst in medical school she was on Pred for Asthma and thought she knew best and tapered too fast. So I truely believe in her judgement, she knows first hand the effects. I promise I will listen to her and my body ... Thank you for your concern x it is great to have this forum to express my concerns to people who have been and are going through the same thing. At times I feel so isolated, angry and sad. Thank you x

  • Hi again,

    I agree the side effects of Pred are pretty horrendous at times, but they do get better, honest! Also agree about the feelings of isolation, unfortunately unless you've suffered from GCA and/or PMR you just don't understand how overwhelming it can be. Trouble is, the patient usually looks ok, so other people don't understand what's going on inside, and because so few know about the disease you have to keep explaining it. So much easier to have a broken arm - everybody can see it and sympathise! That's why this forum is so good, we've all been to the dark places at times, so understand and try to help others out of them. No point feeling angry - just keep telling yourself "I will get better". Take care.

  • But there is no "getting better" it's a life sentence! and apart from my husband I have to keep my illness a secret. I am worried that my frail 87 year old mum will find out and she would worry so much even though there is nothing she can do. So I live my life a lie, making feeble excuses of why I can't do the things I used to do and have to put up with the " you're putting on a bit of weight" comments. I feel ashamed of myself that I have this disease.

  • Hi Carol, there is light at the end of the tunnel, I was in remission for 7 71/2yrs, came back in 2012, I am now on 1mg every other day, will be off pred by 25th July under cons. supervision. I will pray for you God Bless

    Sue x

  • I had GCA and now well into my 4th year of remission and so is MrsO.

    So there is a "getting better".

    Why feel ashamed, would you be ashamed to have diabetes, cancer, TB,flu etc?

    We do not have total control over our humanity. Be kind to yourself please.

  • Hi Sambucca. Ashamed is probably the wrong word to use. I am keeping it hidden as best I can because I don't want my 87 year old mum to find out. There is nothing she can do to help and the knowledge and worry of my illness would be to much for her. So I make excuses all the time .. The truth is I am ashamed of myself for lying to friends and family. But what else can I do? Even without the "mum" factor I find it difficult. I don't know where to start to explain GCA or the effects Pred is having on me. Sometimes I think it would be so much easier to say "I have Cancer, but there is a good chance, with the treatment, I will be ok". People would know then exactly where I am at.

  • Caro

    I understand exactly what you mean about not wanting your Mother to worry. However, Mother's will worry that is what they do and sometimes they sense you are hiding something.

    However, there is a way of explaining to family and friends without you having to say one word, except for sit down and watch this DVD please and then we will have a cuppa.

    It is called 'You are Not Alone' and was made by patients with the help of some lovely medics and it is jargon free. The aim was to help people with PMR and/or GCA explain these two little known illnesses, for which even those who have it, did not understand it at all. The Awards for All section of the National Lottery helped to fund it. It is available for purchase on this website.

    pmr-gca-northeast.org.uk, click on Support Us and then click on Our Little Shop.

    You will also see that we have published a booklet called 'Living with PMR and GCA'. Again written by patients for patients.

    There is a thread on here and I have copied the first posting for you:

    greenlander

    Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago. I do hope PMR&GCA North East will be able to make it widely available. Worth whatever it costs.

  • Thank you so much Sambucca. I will get the DVD definitely.. For friends and also for my boss at work.. Heard today from a colleague that he thinks I have "sunbathing/Wimbledonitis" and is thinking of sacking me!

  • Caro12line

    send me a PM

  • Carol, it might not feel like it right now but oh yes you WILL get better! There are many around to prove it, including Sambucca who sometimes posts here and whose GCA has been in remission for 4 years, and myself for whom both PMR and GCA went into remission 3 years ago. It is most certainly not "a life sentence"! It is life-changing for a while, but certainly not life limiting. No need to feel so "isolated" now that you've found this forum - there is always someone around for a chat whenever you feel down or simply feel like letting off steam! Have you looked at the Charity's website to see if there is a support group in your area where you can meet up with others who understand exactly what you are going through? As DorsetLady has said, just keep telling yourself that you "will get better"...and you will!

  • I have my tests results and all my blood test was very good :D trying to tkae Humira once a month to see if the night sweats are getting any better.

  • Good news with the bloods. Hoping Humira will help you

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