Does anyone out there suffer from Takayasu Arteritis?

[Queenie-Stardust]

Hi,

I was diagnosed with Takayasu Arteritis in 2017 which is a disease that attacks the large vessels in your body.

It was a shock as I have always been so healthy and never had to take any medication. I now find myself having to take a whole load daily including Prednisone and a weekly dose of Methotrexate, which I was very nervous about taking initially! It's a horrid drug but it does definitely help my symptoms.

I have come to terms now with my condition and how it has affected my life in so many ways. Onwards and Upwards is my motto!

Anyone one here suffer with TA?

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Is there anyone that has been diagnosed with Takayasu Arteritis?

Queenie-Stardust in NRAS23 days ago

Hi Everyone it would be great to hear of anyone that is suffering from Takayasu Arteritis. (Inflammation of the large vessels) I was diagnos...

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JoinedDecember 6, 2018

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[Chezh]

Hi there,

I was diagnosed after having an aortic valve replaced in 2014. Yes it's hard & personally I still struggle to get my head around it all!

If I can help further let me know.

Cheryl

[Queenie-Stardust in reply to Chezh]

Hi there only just seen your message!

How you doing? It's a shock isn't it when you find out and takes time to come to terms with it. Especially if you have always been well and healthy. I try to just get on with things and now take it in my stride. Except when I get bad side effects from the Methotrexate which I take weekly. I'm on 20mg some weeks are not as bad as others. I feel much better just taking 15mg. Seeing Consultant in a couple weeks and will discuss this. How are you doing? Are you in the UK?

It helps so much to be in contact with people that really understand TA.

Thank you for getting in touch.

Christina.

[Christophene47]

Hi Queenie Stardust,

Sorry about your diagnosis. I don't know of anyone who has it, but there is an excellent book written by a young woman with it, and her experiences and coping skills.

"Sick and Tired of Being Sick and Tired "by Sheri Schwar. It is available as an ebook on kindle or Google. Very informative from the viewpoint of a patient.

Are you in the US or UK? Somewhere else?, You need an excellent treatment team; she lives in Pennsylvania and got her best guidance and treatment at Johns Hopkins in Baltimore, Maryland.

It's a good read too; very personal and I believe she gave a way to contact her. Good luck.

[Moonflower76 in reply to Christophene47]

There is also a book called Unstoppable God by Tracey Goodwin available for download on kindle.

[Queenie-Stardust in reply to Christophene47]

Hello thanks so much. I will look into getting copy. I am in the UK. I have regular check ups both with a Rheumatology Consultant and a Vascular Consultant. Also see the Specialist Rheumatoligy Nurse in between. Hope your well.

Thanks again.

[Queenie-Stardust in reply to Christophene47]

Hello thanks so much. I will look into getting copy. I am in the UK. I have regular check ups both with a Rheumatology Consultant and a Vascular Consultant. Also see the Specialist Rheumatoligy Nurse in between. Hope your well.

Thanks again.

[bernette]

Hi there, I was diagnosed TA December 2018, I'm now 52. For over 10 years I had raised ESR and CRP but despite many scans and investigations nothing was found - I also had no symptoms for most of that time and considered myself fit and healthy. December 2015 I was diagnosed with an over active thyroid - went to GP with unexplained pain in calves and they noticed high resting heart rate. Anyway, long story short - treated with carbimazole for 12 months. 12 months no meds and felt well. Feb 2018 felt symptoms returning, so back on the carb again. Symptoms worsened, couldn't carry heavy things or climb stairs or hills without getting breathless. Autumn 2018 felt very unwell, no energy and brain fog. Sent back to rheumatology as my ESR still very high. Finally referred for a PET scan, which had been mooted years earlier but as I was symptom free at that time was not considered a priority.

It was a massive shock to hear the scan showed inflammation around my major blood vessels, I cried when she told me I was immediately put on 60mg pred plus the other meds to counter act side effects. I am now tapering the pred and am on 15mg methotrexate which I seem to be tolerating no problem. Still no symptoms that can be attributed to TA. My ESR and CRP now at normal levels.

Had a radio active treatment for my thyroid back in April this year. Feeling well now and only niggles are either pred or thyroid related (I think); thinning hair, skin thin and easily bruised or grazed; minor lack of sensation on skin/scalp; return of menopause symptoms not felt in 2 years.

It is hard to get my head around the fact I have this rare condition - without blood tests for other reasons I would not have my diagnosis but I consider it is a good thing I know about it. Just how rare is it though...and how will it affect me as I get older? Has permanent damage been done, these are my thoughts sometimes.

Down to 7mg pred and the stone in weight I gained has almost vanished - still have chubby cheeks though

Hope you are keeping well too

[bernette]

PS I am in the UK

[DawnMezza]

Hi Queenie-Stardust

I have just in August been diagnosed with TAK. Coming to terms with everything is so hard. When and if the medication will work. I was on methotrexate but it was damaging my liver after only 2 lots. I have just this week started biologics treatment. I am on Pred 60mg which in itself causes blurred vision for me.

I find it hard to work out what are TAK symptoms and what are medication side effects. I have also put a stone on in weight in the last month since Pred was increased from 20mg-60mg.

I also find it hard, if I am struggling with the pain and what is effecting it, how do I explain it to my family.

The tiredness is hard when you’re used to being very active.

So much to come to terms with.

I keep hearing people ask if I have cancer and when I say no, they say oh so it’s not that bad then!!!

This group is amazing to learn about different things and what you may expect and what can help.

I love your motto