Hello

[Fahmida_zz]

Hi everyone

I’m new to this but I have a rare for of vasculitis called Takayasu Arteritis which lead to a heart valve replacement twice, and an aneurysm, late last year I had endocarditis. I’m on a bunch of meds such as prednisolone, methotrexate, bisoprolol, mycophenolate, aspirin etc.

I’m in my mid 20’s so it’s been extremely difficult especially since I was fine before my diagnosis 4 years ago. Luckily, I still managed to complete my degree whilst all this was happening, so I’m happy about that.

I’d like to hear from anyone who may have had a similar experience. It would just be nice to know I’m not alone.

[Nadine99]

Welcome to the club. My husband has a different form of Vasculitis but be sure to visit the Vasculitis UK website or join us on FB

[Fahmida_zz in reply to Nadine99]

Hi Nadine99

Well I’ve been in the club for 4 years now Doesn’t seem that long. I’m sorry to hear about your husband. I’ll definitely check the website out thank you.

[MrsChips in reply to Nadine99]

Hi Nadine, I too have Takayasu A. I had a stroke last March and a heart attack with a stent in August. I am 66yrs now so quite a bit older. It’s an awful shock when we’re ticking along nicely and considering ourselves to be fit and happy. Since October, I’ve been on everything you mention along with the biologic epipen Tocilizumab. I qualify for this as I also have thrombophilia which causes my blood to clot very easily.

I am now beginning to notice some improvement in my arms, which ache badly when I put them under any stress. Having a shower and then getting dressed was a mammoth task but is now slightly better.

The Tocilizumab brought my inflammation levels down to zero, almost immediately and they’ve stayed down ever since. Hence I don’t need any scans at the moment. I keep my fingers crossed every time I have a blood test. So far so good.

If you’d like to talk further, you can always PM me.

Jane

[Nadine99 in reply to MrsChips]

Jane, this reply is really to Fahmida_zz but I'm sure they'll read that.

[philtw]

Hi

I had PAN (Vasculitis) when I was 21 years and went into complete remission after 5 years. In 2013 I was diagnosed with GPA, 30 years later. I relapsed again in 2016 and struggled to get it back under control. 7 months later I am now back under control, but I think it may have attacked my lungs again. I go for annual lung (CAT) scan and bone density checks. I also had a liver ultrasound later in 2017.

I'm currently on 10mg Prednisolone, 20mg Methotrexat with no issues....., also Crestor, Folic Acid, Vit D and Calcium.

I've had rituximab x4 which helped to reduce my steroids. Symptoms for both PAN and GPA were similar, but the only difference is that PAN affected my kidneys and GPA my lungs.

Are you on any other medication and what dosage of steroids.

As you can see I been on steroids twice and I’ve had no real issues.

Let me know if you require any other information

[Fahmida_zz in reply to philtw]

Hi philtw

I am sorry to hear about your condition, I have been on steroids on and off. When I was first diagnosed with TA, I was put on 60mg and methotrexate, and folic acid because I had severe inflammation effecting my carotid, subclavian and renal arteries with severe aortic regurgitation. I then underwent surgery to replace my aortic valve and have aortic reconstruction in 2017 then felt better came home.

I fell ill again in November and was rushed back to hospital only to find out I have an aneurysm and endocarditis I went back into emergency surgery to get to have everything replaced and nearly lost my life during that episode.

Now I’m on 10mg of prednisalone, 12.5mg of methotrexate and 2g of mycophenolate. I have found it really difficult to get my inflammation under control.

I have an added issue where my body seems to react very badly to new medications, I vomit continuously until I get used to it. It’s like a never ending cycle with me.

Did you get the water retention with the steroids or did you notice any other changes?

[philtw in reply to Fahmida_zz]

Dont worry.......I was also on 60mgs of steroids.....which is not good as it can make you get angry and lose your temper easliy, but since I had already been taking steroids 30 years ago i am very much aware of this....

.....The steroids will control your condition whilst the methotreaxte maintians your condition whilst you drop down off the steorids....... I cannot get below 10mgs without relaspe, but GPA has a 75% chance of relapse...but it doenst really bother me as i feel fine and healthy.

One thing you must know as you are taking methotreaxte and steroids and with Corovanvirus you must be shielded.......as you are high risk.

leedsth.nhs.uk/assets/f6d9e...

[philtw in reply to philtw]

I bloated and its called 'moon face' when i was on 60mgs.......

[Fahmida_zz in reply to philtw]

Yes it’s called ‘moonface’, I have to give my family credit I must have driven them up the wall whilst I was on the high dosage, I was very stroppy . I remember kicking off about a chair that wasn’t in the right place. Looking back now I laugh at myself 😆. They were so patient with me bless them and I am shielding at the moment

[Chezh]

Hi Fahmida_zz,

I have Takayasu Arteritis.

I was diagnosed after having my aortic valve and aortic root replaced in 2014. It was all such a shock at the time as I didn't know that I had heart problems.

I'm still on a cocktail of drugs but manage ok most of the time.

Cheryl.