Just diagnosed with GCA Aorta and more- struggling with plan of sction

[Lizfm2002]

Struggling with diagnosis, way forward and whether to go through immunosuppressant course now after finishing horrendous Iv infusion of steroids . Side effects doing my head in literally of steroids. Anyone with same diagnosis ? Your experience or thoughts please ? Thank you .

[Nadine99]

Hello there, I think you'll find most people have steroids that are tapering and the immune suppressant drug like Methotrexate, Azathrioprine or Mycophenalate and if these don't work, they move on to Rituximab. It'll be the steroids that you are tapered down on and yes, there are side effects but better than not having the steroids. Anyway, other people much more knowledgeable than me will write some replies, so hopefully you will find some help here. Good wishes to you

[PMRpro]

If you have a GCA diagnosis you will find a lot of other people with GCA and on steroids over on the PMR and GCA forum: healthunlocked.com/pmrgcauk

There are also 2 other forums in the UK specifically for GCA/PMR with members from all over the world.

One is attached to this charity: pmr-gca-northeast.org.uk

with the forum at pmrandgca.forumup.co.uk/ind...

and the other is on the patient.info site: patient.info/forums/discuss...

There aren't many with a diagnosis of GCA of the aorta - purely due to the lack of the sort of imaging that shows it being done routinely - but quite a few with the GCA label who will share their experiences. There is one other lady on HU who was reluctantly offered a GCA aorta diagnosis by the rheumy - I'm sure she'll like to compare notes as she has had very poor care thus far.

I think it is fair to say the i.v. dose of corticosteroids is the worst - oral can be unpleasant at first but it does improve as the dose reduces. As far as I know rituximab isn't used in GCA as it shows little effect although it has worked for other forms of vasculitis. A trial has recently been completed with tocilizumab in GCA - results still to be published though.

[Lizfm2002 in reply to PMRpro]

Thank you for your reply and sorry for delayed thank you. Have been very unwell.the Iv infusions were killing and whilst I understand the need to damp down the acuteness of the inflammation the steroid infusion is so strong it feels poisonous and I'd hard for the body to tolerate . The effects of this with the aziathioprine were astonishingly bad and so days have passed by before I could resume a life that could be considered life let alone normal.

Now I am trying to understand the possible treatment and to manage the intense pain and complete exhaustion and understand if the diagnosis is definitive. At the same time as this I'm trying to understand the use of the next level of drugs which they want to use to get this acute phase managed . I feel pretty bad with the Pain in chest frightening but I don't want to have additional side effects of cyclophosphamide fir example which seem s to be pretty toxic . How have others fared on it? I'd it an Iv infusion or a tablet and with side effects how long before they passed? There are other drugs being used at this stage too-cyclosporine, dapsone, tocilizumab , rituximab and abatacept. Has anyone been given any of these and if so how are they working for you? I should say that whilst it is clear that I have GCA aorta and subclavian arch I may also have Takayasu arteritis and this is still under debate which makes treatment thoughts harder to manage at this point.

It would be great to hear anyone's story about their diagnosis and how they feel in their everyday life - how they manage with the chest pain and breathlessness not to mention the steroid effect.

And also has anyone seen Prof DCruz and how did they find him?

Thank you in advance of all help and information .

[PMRpro in reply to Lizfm2002]

I really don't know of anyone who has been put on cyclophosphamide - it is used in other forms of vasculitis but not to my knowledge in GCA. As I say, tocilizumab has been used in a clinical study which has just closed, just the results to wait for. The rumours are promising. There are a few patients in the USA who are on tocilizumab - it costs $17,000 per year if you don't have a diagnosis if RA where it will be funded by the insurance companies but they have found funding via the company I believe.It isn't simple and doesn't apply in the UK of course.

You haven't mentioned how old you are - I know one lady who was told she had Takayashu's until her 50th birthday, when she discovered the diagnosis had been changed to GCA! I'm told they are histologically identical and the differentiation is made on the age factor - though I understand Takayashu's usually affects more systems but I don't know much about it. There is currently a consultation going on about the use of tocilizumab where they are suggesting recommendation for Takayashu's, where there are only a couple of new patients per year in the UK, but not generally for GCA, where there are far more.

Most people with GCA (or PMR) who have been put on other drugs in the UK have been tried on methotrexate or azathioprine, with varying levels of success. I know of odd patients who have been given leflunomide, also with little long term effect and quite unpleasant side effects. But you can also say that about pred.

Sorry to not be of more help - but you are a very unusual presentation of GCA! Which you have no doubt been told and I know it doesn't really help.

[picturemaker]

Yes I have the same diagnosis. I had PMR 7 years ago and took steroids then methotrexate was added in. I had real problems with steroids at any level so the methotrexate helped to lower the steroid dose. I stopped methotrexate after a very gradual reduction 2 years ago. At the end of April this year I was diagnosed with PMR and GCA of the aorta. Initial dose of steroids was 40mg and I thought I might lose my mind! No sleep, hallucinations and no sense at all of what was real. I started taking methotrexate on Monday and am feeling grateful that it is available and the end of the nightmare might be in sight.

[Lizfm2002 in reply to picturemaker]

Hello

Thank you for reply. Really helpful. Apologies for delayed thank you. Been feeling pretty poorly . See my other reply. You'll see that we still have to get a complete diagnosis and in the meantime I'm trying to understand about the next level of drugs particularly cyclophosphamide ? What symptoms for you to have with your aorta diagnosis and how do you feel on a daily basis ? Are you more bothered by the symptoms of the disease or by the steroids? Did you have to take the cyclophosphamide? What was that like if yes? And how has the methotrexate been working for you? Has it eased the chest pain?

Have you been able to continue with normal life?

How do you deal with the overwhelming tiredness and poor/ no sleep ?

Look forward to hearing if you'd be prepared to share and how they reached your diagnosis too .

Thank you so much. Sorry for poor typing and typos .

[picturemaker in reply to Lizfm2002]

I am able to do quite a lot now that the steroid dose I'd down to 25mg, although I do need to rest/sleep during the day. My initial symptoms were roaring tinnitus, dizziness and faintness, overwhelming fatigue and weakness in my arms. I also,had very low blood pressure in my left arm, and tingling in my left hand. These symptoms were in addition to the PMR symptoms. I had had these symptoms for 6 months and was very lucky to get my rheumatology referral before any real harm was done. I am learning to pace myself, it is frustrating but If it helps me to recover I can bear it. Within a week of starting methotrexate I did feel my spirit lifting.

[picturemaker in reply to picturemaker]

The diagnosis was made following a doplar scan of my arteries.

[Lizfm2002 in reply to picturemaker]

Thank you picture maker foryour replies . I have been in hospital for some time now. The pain in my chest and other symptoms lead them to believe I was having s heart attack . Thankfully not. But it has all been hairy and draining and frantically worrying. Which is where your helpful discussion around your symptoms helped me as I now have a rheumatologist team assessing every orifucr/organ/artery , or so it seems, and I'm trying to make sense of it all and just knowing what someone else has felt gives a little structure to the thinking. Really grateful to you. It's all going to be a bit if a process but what I've learned is that accepting the first pronounced view and treatment isn't always right as the effects of the treatment so far on me without complete diagnosis has been devastating.

I'm learning quickly and people like you need to be thanked for helping me along the way.

[picturemaker in reply to Lizfm2002]

Good luck and I hope you will soon have a treatment that works without horrible side effects!

[1gregoryd]

If you have a facebook account you can search GCA and there is a support group you can join. Also if you search Yahoo Groups Giant cell arteritis there is a good support group. Good luck.

[Lizfm2002]

Thank you for help