Page last modified 01/30/06
The only thing harder than trying to figure out where to start one of these "My Life" things, is knowing when to stop.  I would like to share my own experiences, with those wanting to learn more about the disease, and for those with the same or similar conditions.  I know from experience, how lonely and scarey "one to two out of every million" can really be, so please bare with me as I introduce you to my personal dragon.
What is Takayasu's Arteritis?
http://www.takayasus.org/aboutta/htm
Ok, so what is it?

If what's listed above is a little too, um, medical, don't worry, it was for me at first.  Basically what happens is that the immune system gets cunfused and starts attacking healthy cells in the body.  As this happens, the walls major arteries (like the big ones coming out of your heart, or down your arm), begin to inflame and close passage through that blood way.  Johns Hopkins Vasculitis Centre has a very comprehensive description of the condition here.  It includes pictures of actual damaged arteries so you can better see what is really happening inside the body.
How did I come to have TA?

Bit of a story there, actually.  Now comes that time I mentioned earlier, about knowing when to stop.  I'll tell you a bit of my story and hope I don't go on too long or bore you.  There is no official cause of TA, but there are a lots of theories.  One of which states that the condition is partially genetic and lies dormant in the body until a stressful event triggers it to become active within the system.  If this is the case, the I guess my story starts around the time I was 19 and trying to "do it all." 

It first presented with an inability to retain information, extreme fatige,  some fainting spells.  At first the doctor thought is was just enemia and depression and treated me accordingly, iron supplements and anti-depressants.  Though it gave me more energy, I was still having problems in university and had dropped out of my program by the end of the semester.  I thought my physical problems were the result of some "higher" message that I was in the wrong field and switched to a Social Work major at a local college.  That went all right for about 2 years.  I was still tired and passing out from time to time, but with the new program came new found energy.  I really enjoyed the courses and work I was doing.  My schedule soon started to fill up again with full-time classes, part-time practicum at a local hospital in the social work department, night shifts at the crisi unit (when else could I work?) and of course, singing in the choir. 

Then my parents came to visit.  Okay, that's not what triggered anything, but if it hadn't been for them, I would have never gone to the hospital that night.  Usually when I have a pain, or feel sick, I go to bed and it goes away by morning.  Apparently parents won't let things go at that.  So, I ended up in Emergency with my father and from what the doctor told me, a fairly nasty kidney infenction.  Please note: don't EVER think a bladder infection will go away on its own.  It will only move further up your body and reappear with a nasty vengence when you have company.  But I digress, I usually do.  The point was the ER nurse couldn't find a pulse on my left side.  We didn't think much of it, but she told me to get it looked at next time I see my GP (general physician).  Within a month I had seen a vascular surgeon, had an angiogram, x-rays, EKG's, and a number of other tests I don't entirely remember anymore, to finally be referred to a Rheumatologist with the diagnosis of Takayasu's Artertits.  It was 2001 when I first hear that name, but the doctors believe it had been active in my system since the first presentation of depression as it is one of the early indicators.  And thus began my journey. 
Takayasu's Arteritis is a rare, chronic, inflammatory disease primarily of the aorta and its branches.  The subclavian, renal, carotid, and the ascending aorta arteries can also be involved.  Takayasu's Arteritis affects more females that males and usually begins in the 2nd or 3rd decade of life.  TA is occasionally called "pulseless disease" because there is difficulty in detecting peripheral pulses that occurs as a result of the vascular narrowing.  It is also common for a patient to exhibit vascular bruits, and symptoms of their arterial involvement.  The cause of TA is not known.
Now what?

At this point, one would usually continue the story, but I first met with my specialist in 2001.  Since then a lot has happened, and I'm sure you don't want to know all of it.  This is where I try to enforce the "knowing when to stop" rule.  What I would like to do, though, is highlight areas that may be of interest to those also struggling with this dragon, or perhaps his cousins.  If there are those of you who have actually stayed with me this long, and would like to know more, feel free to contact me.  I'm always willing to share my experiences if it will make another's journey less daunting.
Mayo Clinic

The first order of business I'd like to address is my visit to the Mayo Clinic in Rochester Minnesota.  I hadn't been responding to the regular gambit of treatments and had developed a nastly little reaction to the most common treatment, my parents, doctors and myself decided a referral was in order.  I have nothing but wonderful things to say about my time there, the staff, and even the city itself.  Rochester seemed to exist for the comfort of those being treated at the hospital and their families.  Not only were we made to feel welcome at the facility, the hotels, restaurants and shops, but every effort was made to ensure we completely understood everything that was happening.  The doctor even had most of my test requisitions faxed to my specialist at home so that lab fees and diagnostic costs were kept down.  Being from Canada, I was not covered for non-emergent health expenses South of the border. 

In addition, as a former patient, I know receive the Mayo Clinic's weekly health newsletter.  Though it doesn't always pertain to my condition specifically, it has neat recipies, women's health issues, stress relief ideas that my husband makes use of at work and different themes of noted tools, articles and ideas each week. 

Medications

PREDNISONE - This is the first and most common treatment for TA.  I was on this for close to 2 years with decent results within the first 6 months.  Unfortunately, after that period, I developed severe side effects and was taken off of it.  Side effects I personally experienced were: moon face, weight gain, mood swings, insomnia, slight short term memory loss, increase water intake, brusing, slow healing, swelling of the feet, and occational breathing difficulties.

METHOTREXATE - A chemotherapy drug, used in smaller doses, for Rheumatological indications.  I have been on both pill and injectable froms of this drug.  Though it alone has not shown to improve the condition, I am currently taking it orally once a week it often compliments other treatments.  The only side effect I experience on this drug is nausea and dizziness within a day of taking it, but folic acid helps to off set this reaction, and I take mine prior to bed time so that I am asleep for the majority of it.

CYCLOSPORINE - Another immunosupressant.  Currently on this medication, I have yet to find any side effects from it.  One point of note though, the capsules come individually bubble packed and when you break the seal, it smells like skunk.  This is one med I don't have to worry about my kitties getting into!!

REMICADE - A newer treatment for rheumatoid arthritis and other autoimmune conditions, this medication is given through IV injection by a nurse over a period of 2-3 hours.  I was on this until New Year's 2005 and it was great.  I received the treatment every 6 weeks and was pain free for 5 weeks after!  It really was "the wonder drug" everyone says it is.  Then I developed a severe allergic reaction to it, swelling and hives, and was taken off of it immediately.  Only a small percentage of people are allergic to remicade though, and it can usually be controlled through the use of Benadryl.

ENBREL - This is my next step after stopping the remicade.  It is a self-injectable drug that I do twice a week.  I've been on it for almost a year now.  Though we haven't seen much of a change in my condition as of yet, I also haven't seen any major adverse side effects.  The worst so far has been a increase of acne.  I can live with that. 

NAPROXEN - Also available OTC as Aleve, this is my prescripted daily pain killer.  It helps to keep my joints from locking up and hurting like the dickens.  It doesn't get rid of all of the pain by any stretch, but it does help to ensure I can continue daily activities (like updating my web-page!!).  The biggest problem I've encountered with naproxen is an noted increase in my blood pressure.  I was never one to have problems with it, despite family history and all that, but once I was put on both this and the cyclosporine, it shot up like a rocket.  So now I am careful and take my BP frequently.  I combine this with Acetaminophen products to manage the majority of my pain.

EFFEXOR - An anti-depressant.  I've been on this one so long I don't really remember the side effects I had while adjusting to taking it, but I do find that it keeps me up at night if I take it too late in the day.  When I miss a dose, I most certainly know it.  The effect is similar to having your head floating about 6 inches above your neck like a balloon on a string.

LORAZEPAM - This was the medication I used to control my insomnia.  Since I have now found a GP (a rarity where I live), He helps me manage my insomnia and depression.  As he was not comfortable with me taking this medication as a sleeping aid, we slowly weaned me off of it.

AMITRYPTALINE - A more appropraite pill to take as a sleeping aid.  It does allow me to fall asleep at night, but we are still trying to find a dosage that will keep me asleep for more than 2-3 hours.

ASA Daily Dose - And of course, with any condition that involves the narrowing of the arteries, one must take some type of blood thinner.  As of yet, I have found no adverse side effects.

Along with the following Vitamins and Supplements: Calcium, Vitamin D, Magnesium, Iron, Folic Acid.

Additional Information

Takayasu's Arteritis Foundation International - This is the first place I started looking for information.  It isn't updated as often as I would like, but you will find quite a few personal testimonies to give you an idea of how others are dealing with their dragons.

Takayasu's Arteritis Research Association - Good people doing good work.  If you do suffer with TA, please get yourself on their mailing list.  For reseach and data to be as accurate as possible, they need numbers!!

Johns Hopkins Vasculitis Centre - A very comprehensive department on the different types of vasculitis.  They also have a quaterly newsletter you can view online that has very current information in this field.

WebMD - Dependable and easy to use.  Though it IS American, much of the information is the same as you would find in Canada. 

Health Canada Online - An excellent place to look at drug information, current health advisories, and forms for things such as permenant disability.