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Giant Cell Arteritis/Never ending

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I was diagnosed in October 2003 with Temporal Arteritis (Giant Cell Arteritis). I had a biopsy which was very suspicious but not conclusive however, I was immediately put on intravenous 80mg steroids, in hospital for 2 weeks. To this day I am still suffering badly with Temporal Arteritis. I have been on steroids now for 5 years and have been on a roller coaster ride with them all the time. I have been seeing my eye specialist every two months. My ESR is fine but my CRP is always elevated as soon as she tries to bring down the steroids.

Been through all the tests you can have MRI's the lot, also feel like a guinea pig at times.

As some of you know the side effects are terrible, I have put on 4 stone and my face is all puffy and round. It has totally changed my life and I get very depressed. I used to be a special needs teacher and had to retire due to ill health.

This disease is not to be taken lightly anyone with this disease make sure they are checking you thoroughly and don't stand for any messing about., I always insist on seeing the top specialist, it doesn't help that I only have one good eye and that's the one mostly affected.

I have now been prescribed by the Rheumatologist Azithoprine (cant have Methotrexate as my liver is damaged) which I should get next week. I am hoping this is going to work for me and I will be able to come down to a reasonable dosage of steroid, after five years I am still on 15-20mg cant go any lower as the pain is to intense.

The thing that gets to me the most is I was only 46 when diagnosed and all they have been saying to me over the years is \"your to young to have this\", well obviously not as I have suffered pain like you wouldn't believe, hospitalised three times and even Morphine doesn't touch it when it gets going.

Best wishes to all of you who are suffering from this chronic disease, I know exactly how you feel.

7 likes, 54 replies

54 Replies

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  • angela1988
    angela1988

    Posted

    Dad mentioned his "side effects" from the mtx to his consultant who said they were not common to that drug but just from looking around forums we can see they are plus like you said he could just have coincidental aches and pains of age and general degeneration, he is still pretty lively lol.

    The docs do keep a good check on him and the main side effects of his pred is the skin tissuing, esp as i said he is lively and gathers lots of scrapes and massive bruising.

    He takes his mtx on thurs nights so sundays tends to be his worse day after that.

    He takes akendronic acid on sundays for bone saving.

    He gets lots of probs with oral-eosoph thrush but its pretty sporadic tho a nuisance.

    Like i said i think he was managing better on steroids alone but alas im not the patient and im not always there at his appts to 'chip' in.

    Thanks eileen :-)

  • Mary_J
    Mary_J

    Posted

    Hiya everyone. Well I saw my Rheumy today and had great news on my crp blood markers. They are normal so he said there is no inflamation in my my arteries. I have reduced from 60mg Preds to 40mg since October and have been pretty good. Still get the "wobbly legs" and breathlessness but no bad symptoms so my body seems to be coping so far. Dr was very pleased so he told me to reduce to 30mg at the end of January and then to 25mg at the end of Feb. He said his aim is to get me to a 20mg dose and stay there for about 12months. If however I keep well he would consider reducing a little more. So I'm happy with all that and just wanted to share with you. Hope some of you guys have news to be happy over too.

    Xx

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello Mary J

    Great to hear that you're feeling good on the 40mg dose.

    Your Dr is obviously taking things to the extreme with his future advice to stay at the 20mg dose for as long as 12 months though! Very rare for us to say that as we're usually complaining that patients are being advised to reduce too FAST. I note that he has suggested considering reducing a little more if you keep well, so all good wishes that you do just that.

    MrsO

  • Mary_J
    Mary_J

    Posted

    Hello MrsO. Yes I thought the same about the 12 months on 20mg but I do believe that as long as I keep well, he will reduce further. He is very approachable and easy to talk to so I'm hoping it will be up for discussion. I have my next appointment on the 25th March. Thank you very much for your reply. I appreciate it very much. We are so fortunate to be able to have accesd to you.

    kind regards

    Mary J

    xx

  • EileenH
    EileenH

    Posted

    "They are normal so he said there is no inflamation in my my arteries."

    Not wanting to be a party pooper but there is a new bit of research done by several people in the London area which suggests that the fact the ESR and CRP are normal doesn't always mean there is NO inflammation and they have identified a possible new test to monitor things. It'll be while though!

    But I like your doctor's approach - and the idea of 20mg for a year fits nicely with the paper I just mentioned.

    Eileen

  • Mary_J
    Mary_J

    Posted

    Hiya Eileen. It's so good to know that there is research being done into GCA and they are coming up with new tests to make life a bit easier. Thank you for your reply. Much appreciated.

    Kind regards

    Mary

    X

  • jean05221
    jean05221 Guest

    Posted

    I hope that one year down the line that things have improved for you. I've had a si milar experience - 17 years ago I was admitted to hospital with susupected GCA only to be told I was too young to have it.. 50 was given as the earliest age to have the disease. ( I was 49!!).

    13 years later after increasingly troublesome reoccurances of the same symptoms, I was considered old enough and have enough of the symptoms to have GCA, I asked to be referred to a rheumatologist and was started on Prednisolone.

    Another 4 and a half years down the line - present day - I suffer from regular attacks and flare ups. ESR rising & falling without any obvious trigger and therefore dosage of Pred usually at the 40-60 mg daily mark - rendering me useless, shaky, blurry eyesight, overweight, moon faced, unable to drive, forgetful etc etc. I was told I would feel like a new woman on the steroids _ nearly 5 years later I'm still waiting!!

    Trying to come off the steroids and replace with methotrexate has so far been unsuccessful - only prompting further flare ups.

    • EileenH
      EileenH jean05221

      Posted

      While doing some research this afternoon for a post elsewhere I noted a report that someone has gone into remission with GCA on toxcilizumab alone. It is acknowledged by the real experts that methotrexate has no role to play in GCA so that is a blind alley really. There is however, a current study using toxcilizumab alongside pred in GCA, the GiACTA study.

      If you follow this link:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      and then follow the final link in that post you will come to a page on the PMRGCA Scotland site. The bottom of that links to information about the GiACTA study both for medics and a version in simple English for patients.

      Even if you cannot be included in the trial (I assume you don't have a positive temporal artery biopsy) your rheumatologist might be prepared to try it or at least contact a centre for further advice on its use. I do know of patients in the USA being offered toxcilizumab to reduce their pred.

      I was also under the impression that variation in the ESR should NOT be a governing rationale for raising the pred dose - it is such a non-specific test it is almost meaningless.

      Just a couple of days ago I was having a paddy about this concept that at 50 you are old enough to have GCA but not at 49. I think one consultant in the UK who has doggedly held this line is beginning to rethink as he told someone recently they probably DID have GCA when they were first ill 2 years ago. At 47. And nearly 2 years ago in South Wales, a 37 year old male was found at autopsy to have had undiagnosed GCA that probably caused the stroke that killed him. Pathologists know it all, but it is too late.

      Hope something here may be of use. Where are you Jean? I assume in the UK as you say you are on prednisolone? Maybe we can direct you to someone helpful?

    • jean05221
      jean05221 EileenH

      Posted

      . I found your links very helpful. Thanks  for your reply Eileen. I live in Gloucestershire and see a Rheumatologist in Bristol. l.My surgery is brilliant but the GPs are baffled by the "atypical" behaviour of my GCA and rely on the Rheummy telling them what to do with me!

      Rheummy did consult a colleague about me last year - that's when the MTX plan was suggested. MTX is no good for me - within 2 weeks of starting it, my GFR crashed to 38 and it was stopped last week (after trying it for 12 weeks) because of kidney pain, badly swollen legs and feet, breathlessness amd palpitations.

      My GCA was diagnosed as "steroid resistant" just before Christmas 2014 - hence the search for something else - so I'm very interested in Toxciilzumab.

      I can't help thinking that "steroid resistant" is a cop out. They all seem to be expecting a "cure" and express surprise at recurrences and failure to come off steroids when required!

      My experience gathered from posts like yours & reading everything I can on GCA is that my GCA is VERY typical and it requires a more creative approach to control and manage it whilst reducing the Pred.

      I'm over the annoyance of yet another 3 months wasted and will be seeing Rheummy next Monday - armed with suggestions for his consideration and I think a 2nd opinion on all of this.

      If you have any suggestions re support groupetc I'd be very grateful. Talking about it like this has been somehow freeing!

    • EileenH
      EileenH jean05221

      Posted

      I am absolutely convinced that most patients who are condemned as "steroid resistant" have actually simply been asked to reduce their pred either too fast or too far.  Further down that link I gave you, in posts 4 and 5, is a description of the slow reduction I use. It and a very similar one have been used by a lot of patients on the forums with considerable success. The other one is in use by a rheumy in the north - and he finds it works. Mine is being studied by a research group. 

      The Bristol group was very good and two former members wrote the Quick and Kirwan paper in those links. I have always felt it was also a bit precipitate - some patients simply can't manage 2.5mg drops and from 10mg down doing 1mg at a time is also far too much to do overnight. 

      If you can manage to travel to Surrey on occasions we can recommend not only an excellent support group (people have arrived regularly from S Wales) which meets every 2 months and an outstanding rheumatologist to boot.

    • jean05221
      jean05221 EileenH

      Posted

      I'm willing to go to the ends of the earth to find a way out of the place in which I find myself!! 

      If you (or Mrs O) can send me details of the Surrey group and the Bristol Group, I'd be very grateful.

      You've given me hope again - I was just considering cancelling my annual month "back home" (Scotland) in June as I felt I wouldn't be able to walk much or enjoy the wildlife on Arran!

      I'm doing my homework for Monday's appt with Rheumy and feel more positive about things;

      Thanks so much for taking time to reply to me

      Jean

    • EileenH
      EileenH jean05221

      Posted

      By "Bristol group" I meant the rheumatology department there - they have done a fair bit of work on PMR and former members seemed quite sensible! Not sure what they are like now but they should have been trained quite well! As I say - we can recommend a very "creative" rheumy in Chertsey!

      I'm sure MrsO will send you details of her support group in Chertsey. She has replied to Lindylulu:

      "as I run the support group in Surrey, I'm answering your post.  We meet at a venue in Chertsey every two months during the daytime.  If you would like to send me a personal message with your email address I will be happy to send you further details.  If you aren't familiar with sending PMs, all you have to do is click on the little envelope under our names on the left hand side of our posts."

      As for your holiday - it all depends on your expectations. It is quite soon for you to be expecting to be be able to walk a lot  probably but I work on the assumption that I can see and watch without walking long distances. I can't speak for how well you will be this June though.

    • jean05221
      jean05221 EileenH

      Posted

      Thanks Eileen for your reply & comments for my holiday. I will simply enjoy being on Arran and hope for better things next year. I'll post how I get on at my rheumy appointment on Monday.

       

  • Lindylulu
    Lindylulu Guest

    Posted

    Hi Eileen,

    Can you please tell me more about the support group in Surrey,

    Lou

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Lindylulu

      Posted

      Hello Lou

      Eileen is probably in the land of nod now, so as I run the support group in Surrey, I'm answering your post.  We meet at a venue in Chertsey every two months during the daytime.  If you would like to send me a personal message with your email address I will be happy to send you further details.  If you aren't familiar with sending PMs, all you have to do is click on the little envelope under our names on the left hand side of our posts.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Thank you to you too, Eileen.  I seem to get missed out with email notification of posts on occasion, so good job you're there!smile  Lou and I are now in touch via email.  
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