Advice on duration of treatment for Takayasu's Arteritis- prednisolone and methotrexate

[Littledot3]

Hi,

After being unwell for 2 years (and experiencing a PE in that time), I was final diagnosed with Takayasu’s Arteritis at Addenbrooke’s on Monday. I have been prescribed daily Prednisolone and weekly methotrexate with a view to reviewing my progress in 3 months time. I know everyone is different but was just wondering what were people’s experiences with TA and the duration of their treatment? I am soon to be 36 and would like to start trying for a family but obviously while unwell and on this medication, I am not able to do this. Also, a biologic infusion was mentioned as a possibility if I didn’t respond to this treatment although I was told that due to the cost, there would have to be a case for funding it. Has anyone had these infusions? Thanks

[BronteM]

So sorry to hear that you have joined our very exclusive society - but you are now being treated in the right place, and they have lots of experience. I'm being treated there too, and have been so impressed.

It took about two and a half years before all my random symptoms came together and I ended up in hospital, though with hindsight I'd had problems long before that. The hospital told me that two and a half was pretty normal, as so few GPs have met this before. So, your two years is not so surprising.

My diagnosis was in January 2012, and I was started on exactly the same drugs as you, and with a similar review period. But I was able to ring up and cry 'help' in between whiles. Stella, at Addenbrookes, will be your great resource over the next few weeks, and she always managed to find a spare appointment if she thought that I needed it.

After 18 months....I am functioning much better, and managing to do most things that i really want to, but have to recognise that a good day, when I do too much, is usually followed by a quiet day. Also, the pain in my arms is still with me whenever I try to do something practical, like changing the sheets, or getting dressed! But I can cope with that as I feel much better in myself. Also, the methotrexate was replaced by cyclophosphamide, which was replaced by rituximab (the biologic one). We are all different, and most of us have to find the drugs that help us best. I do hope you will respond much better than I've done and will stabilise more quickly. I am back doing some educational consultancy though, and finished writing a book recently....all things that I was doing before I was ill.

Can't help about starting a family I'm afraid....we're on the end of the telephone waiting for news of a grandchild that is due in Hong Kong next week!

Good luck with all this....it is very frightening when you start this journey, but this site is wonderful and will help you a lot and give you advice whenever you need it.

[Cass8585 in reply to BronteM]

BronteM

Your story has been a relief to read. I am writing because my niece has just been diagnosed and for many reasons I am really worried about her.

She has just started Chemo therepy. Is this something you went through?

Is there any advice you can give me and my family... ?

When you say functioning better after 18 months... at the moment my niece is in bed alot of the time. Her real hope is to go back to work in child care.

Are you in the Uk? or america receiving what sounds like a great level of care? Addenbrookes where is this based?

Cass

[Littledot3]

Hi BronteM,

Thanks for your reply and telling me about your story. I'm glad I'm finally getting somewhere at Addenbrookes and think I just have to see how it goes as everyone does respond differently. Just a bit frustrating when I've had to put some plans on hold already while I've been ill and now possibly for quite a bit longer too while I get better when I'm running out of time a bit! Hopefully it will all work out in the end.

I suffer with shortness of breath so I struggle to do exercise and generally get very tired and have lots of other odd symptoms too like chest pains, aches, weakness, numbness in arms and cold hands but for the most part I try to carry on as normal although it just makes everything much more hard work. I still work full time and am starting a new job in a month or two's time so I'm hoping my symptoms might improve soon. I definitely have that thing where if I push myself too hard now, I pay for it a day or two later.

Hope you continue to get better and lovely news about your soon to be new Grandchild!

[BronteM in reply to Littledot3]

One of my more frightening symptoms was the chest pain.....it was easy to convince myself that my heart was playing up. In fact the scans showed inflammation and narrowing in my aorta, and the pain has reduced a lot since treatment. I was also told that exercise was important, so take our elderly Labrador for a daily 'ladies loiter'. Am also trying to swim regularly again, but that involves the numb shoulders and arms...! I'm really impressed that you are working full time, and I hope the new job is a great success.

[Voutton]

Hi Sorry that you have such a troublesome time ,but Bronte seems to have given a lot of reassurance For myself I have SLE and took TA last Sept when they put me on Pred but took a bad flare and couldn't get my pred reduced so they put me on Meth as well All I can say after 8 weeks on the meth I am feeling fantastic in comparison . I was ready to stop the metho but the hospital altered the dose over two days instead of one and that reduced the awful side effects .I am so glad that I have stuck with it Now hopefully I will be able to reduce my steroids. I am 63 now Nd although they reckon I've had Lupus all my life I wasn't diagnosed till I was 41. It may sound silly but getting a diagnosis after years of uncertainty meant that I was now in control Please don't worry learn all you can Change what you can and find what works for you Remain positive and I'm sure all will be well for you On a final note don't Stress I'm sure all will be well for you Take care x

[RosieK]

Hi, I just found your posts, and thought I could share my experience with you. I was diagnosed with T.A when I was 17 years old. That was in the 1960s. Not a lot was known about it back then . I was put on prednisolone and have been on it ever since. A very small dose now . If I can be of any help , or answer any questions, please get in touch. Good Luck. X