Just been diagnosed with Takayasu Arteritis and feeling very anxious

[DawnMezza]

Hi

I have just been diagnosed with TAK. I started last year with severe headaches, constant dry cough and aching joints. I then got covid in December and thought it was all down to that. I ended up having long covid. I had the 1st vaccine and my headaches became even worst with my vision becoming blurred. At some points I could hardly walk with my knees and ankles and my wrists and elbows were causing so much pain.

Eventually they started to treat me for Temporal Arteritis and I had a biopsy which was clear. I have a CT scan and an MRI scan on my head which were both clear. I was started on Prednisone and each time they lowered my dose my headaches would become angry. They decided to send me for a Pet CTscan which then gave the diagnosis of Takayasu Arteritis. My Aorta is inflamed and they have now given me Methotrexate to start, which I will be starting on Saturday.

My own GP didn’t even know what TAK was and the consultant at the hospital said she didn’t know too much about it as it is so rare in the UK,

It would be good to talk to someone who has this or has had it and can give me some idea of what to expect etc. Or even just a friendly chat.

Thanks

[DorsetLady]

Have sent second reply on other forum….

[juli-pa]

Hi I am so sorry to hear what you are going through. I am unable to give you any advice on your condition as i got diagnosed last year with GPA. I was the same in so much pain & took doctors six months before they referred me. I had a kidney biopsy which confirmed my condition& had some damage to the kidneys which may have not been the case had I been referred earlier. It is very scary when you get diagnosed but I am now in clinical remission. I hope all goes well for you & hopefully Someone with TAK can help you with some answers. X

[DawnMezza in reply to juli-pa]

Thank you Julia x

[EGPAGuy]

Hi Dawn and sorry to hear about your recent diagnosis. I don't have TAK but vasculitis is rare and you will find no one in general practice or local hospitals knows much above it. I share some of the same experiences...as soon as I reduce pred (for me below 30/day) symptoms all return and it becomes a race to find a steroid sparing maintenance drug because you can't stay on pred at high doses forever. If it helps I know someone albeit for gpa who has had great results with MTX. I think the general response you will find here and one I recommend is find and get referred to a specialist clinic or at the very least a rheumatologist. I suck up a 5 hour round trip regularly to Cambridge just for this reason as you need a multidisciplinary team. Addenbrookes hospital is the place to be and your gp can refer you-I xan provide some contact details if you need as can others here. Depending on where you live this forum may be able to recommend somewhere closer. Hope that helps..

[DawnMezza in reply to EGPAGuy]

Hi thank you for your support. I live in Salisbury. Know Cambridge and Addenbrookes but too far away from them.I used to live in Norfolk which would have been ideal several years ago.

I do need to look.

I am under a Rheumatologist but she didn’t know a great deal about it unfortunately

[EGPAGuy in reply to DawnMezza]

Is Bournemouth close enough. THE Royal Bournemouth Hospital I believe has an immunology depart and within that some expertise of vasculitis

[DawnMezza in reply to EGPAGuy]

Bournemouth is only 50 minutes from me

[EGPAGuy in reply to DawnMezza]

Also try Swindon Hosp..thats where my friend is being treated for GPA..must be close ish to you. She is doing great on Methotrexate (mtx) and thats been for the past 6 years. Sorry to have to welcome you to this crappy club but its not all gloom and doom. Vasculitis UK can provide you hopefully with doctors names that your GP can refer you to. In my case I just went ahead and contacted the hospital directly.. ultimately you will need a GP or consultant referral but helped me to do something proactive. We all have to learn to stand up and ask for help regularly and not be worried about being perceived as being pushy. I would count my wife now as being as knowledgeable if not more than most doctors with my condition EGPA. Best of luck

[DawnMezza in reply to EGPAGuy]

Thank you I will look into it all and see what I need to do regarding consultants etc

[AmyS1]

Call the vasculitis UK telephone ☎️ helpline.

[AmyS1]

The vasculitis helpline is great. You do need to be seen at a specialist centre.

[DawnMezza in reply to AmyS1]

Thank you Amy

[Mooka]

Hi DawnI’m so sorry you find yourself here. As others have said give the helpline a call and ask them for your nearest specialist centre. Vasculitis is rare and you have a rare form of it. There was a book written some years ago by Sheri Lyn Schwar who had TAK. It’s called sick and tired of being sick and tired and charts her journey. Do bear in mind she is in the USA and treatment has moved on since she wrote the book. Please let us know how you get on and let us know any useful tips you pick up on your journey. Good luck. 🤗

[DawnMezza in reply to Mooka]

Thank you Mooka I will indeed

[Chezh]

Hi Dawn, I have Takayasu and was diagnosed after heart surgery to replace a valve. I'm also on Methotrexate. I have joint Rhuematology care, I see a Rhuematologist at a local hospital and also Prof Justin Mason who is at Hammersmith Hospital in London.. He is a specialist in Takayasu as has written the information on the Vasculitis website and many papers on the subject. It's a lot to understand to start with and I still struggle at times myself 7 years after diagnosis so please feel free to contact me if you need to chat further.

Cheryl

[AmyS1]

Nb I live in Kent and go to Addenbrookes. It saves time in the long run to go to a centre of excellence and will preserve your health.

[DawnMezza]

Hi Amy

How did you manage to get appointments at Addenbrooks?

Thanks Dawn

[John_Mills Volunteer in reply to DawnMezza]

You have to ask your GP for a referral.

Prof Justin Mason at the Hammersmith is probably the U.K. top expert regarding Takayasu Arteritis. You can ask your GP for a referral. Prof Mason will work with your own consultant if they are willing to do so, this will save travelling so much.

[DawnMezza]

Thank you John