Takayasu's Arteritis support

Hi. I was diagnosed with Takayasu's in 2005 at the age of 29 after having had a stroke in 2004 and a series of TIAs later in that year. As soon as my consultant diagnosed me, he started me on steroids. Prednisolone.

I didn't really know a lot about steroids but I trusted my consultant and took them. My pharmacist told me I might gain a little weight. I wasn't too concerned. I used to run 3 miles everyday, walk everywhere, and swim at the weekends with my 3 year old son. Plus I weighed 50kgs. A little weight gain wouldn't hurt.

How wrong was I?

5 years later my life is a mess. Everytime I drop below 15mgs of preds all my symptoms return and I have a TIA. I can weigh as much as 67kgs at times. Not a good look when I'm only 5'1\"!

I can't run because of the breathlessness and the dizziness, my arms are too weak to swim or even lift a 5kg weight. I can't do anything above waist height so even washing my hair or unclipping a bra is a production. Try getting dressed and undressed when you need to constantly stop and start because your arms hurt. I can't sleep so I get angry at my son. I can't work because I get dizzy and fall downstairs and break bones or I fall asleep (comatose) for 5 minutes because my body needs a rest.

Imagine your high school teacher if she did that! Kids are not the nicest of people when you suddenly look different to last term because my steroids have been increased. I have weird hair growing across my forehead and on my shoulders. Schools need teachers that can be relied upon in a crisis. I have had to give up so I sit at home getting depressed.

However, I don't want to be on prozac.

When I was diagnosed with type 1 diabetes in 1995, I felt empowered and in control. I knew what it was, I knew what to do and my life improved. 1 in 6 people has it. I could count on paramedics knowing what to do IF I became ill.

Takayasu's has been the complete reverse. Even doctors, let alone paramedics and nurses, look at me blankly when I tell them what I have. Not a lot of people (and it's mainly women, so who cares anyway?) have it so there's not a lot of research.

In February I looked normal. Now, I have a moon face weigh 60 kgs and my 11 year old cousin asks why my face is swollen and I'm fat!

I have just started chemotherapy...

[quote:becee85331=\"Laila\"],,, I have just started chemotherapy...[/quote:becee85331]

What kind of chemotherapy (name, drugs, etc) is that?

Cyclophosphamide.

Sorry. I thought I'd get an email if someone commented on my post.

[quote:521ddd1327=\"Laila\"]Cyclophosphamide.

Sorry. I thought I'd get an email if someone commented on my post.[/quote:521ddd1327]

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EMIS Moderator (1)

I understand you. I was diagnosed with Takaysus type III at age 6 and was treated with Prednisolone. I Lost my left kidney because there were no confident surgons in CHINA back in 1997. Then I was treated with cytoxin when I came to the united states. And then Remicade and Humira. This disease is a life time struggle. You have to manage your own diseases and be very educated about it. Make sure you eat healthy diet. The reason your doctor put you on that drug is to find a way to suppress the diseae and gain control of it. Immune system in a person is really hard to manage, not everyone's body will respond the same way. It is not good for you to be on those drugs for long term, because of side effects. Read into personal diet. Even though my blood result shows high ESR and CRP I had no symptons and advance of disease for a while. But you generally want to control it, because in case of surgery you will need to make sure your inflammation level is low.