Discussions By Condition: Medical Stories

Takayasu's arteritis

Posted In: Medical Stories 3 Replies
  • Posted By: Anonymous
  • February 9, 2009
  • 03:56 PM

I was diagnosed with Takaysu's arteritis in may 2005, i have had bypass to aorta and been revasculised, i am a lot better than i was, but still have other probs disease has coursed. I would like to hear from other people that have this disease, as it s very rare dicease . p s i am a female age 45

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  • I was diagnosed with Takaysu's arteritis in may 2005, i have had bypass to aorta and been revasculised, i am a lot better than i was, but still have other probs disease has coursed. I would like to hear from other people that have this disease, as it s very rare dicease . p s i am a female age 45[/hello enash,my 11yr old daughter was diagnosed with Takayasu in oct 2007.she has suffered for many years and even with the meds she hasnt improved much,spends most of her time in wheelchair,especially during colder weather.we live in New Zealand and its extremely rare here,I only know of 2 others here with it.she is in constant agony and i now have to home school her due to the pain she experiences daily.they have dropped the steriod,but she is still only methatrixate,gabapentin and very powerful pain relief(morphin,clonidine)it has affected her arms,back,legs and stomach.how are you getting on?i know first hand(well second since shes my daughter)how terrible this disease can be.I hope you are keeping well.have you heard of Tara?its a T.A site and is great,i have joined or go to many med sites to learn all i can and to communicate with others with T.A.
    Anonymous 42789 Replies
    • October 2, 2009
    • 01:32 PM
    • 0
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  • I was diagnosed with Takaysu's arteritis in may 2005, i have had bypass to aorta and been revasculised, i am a lot better than i was, but still have other probs disease has coursed. I would like to hear from other people that have this disease, as it s very rare dicease . p s i am a female age 45Hello you all, I want to thank you for writing about this terrible desease. My husband is suffering from this, he is 28 and has been diagnosed when he was 20 years old. He has problems with his renal vessels and has made some surgery. Now he is taking steroids. He took methotrexate for two weeks but stoped it imediately because of a hard reaction. He is taking steroids 5 mg a day. We are from Albania a small country in Europe, here nobody has heard about this desease, even the doctors, and we have to go abroad to take medications and see the doctors. Now we are having qiute a normal life but it is still difficult to accept and live with it. Regards to All of you and hope the best, and also that the doctors could find some medicine for this desease
    Anonymous 42789 Replies Flag this Response
  • Hello you all, I want to thank you for writing about this terrible desease. My husband is suffering from this, he is 28 and has been diagnosed when he was 20 years old. He has problems with his renal vessels and has made some surgery. Now he is taking steroids. He took methotrexate for two weeks but stoped it imediately because of a hard reaction. He is taking steroids 5 mg a day. We are from Albania a small country in Europe, here nobody has heard about this desease, even the doctors, and we have to go abroad to take medications and see the doctors. Now we are having qiute a normal life but it is still difficult to accept and live with it. Regards to All of you and hope the best, and also that the doctors could find some medicine for this deseaseHi everyone, I have only just been diagnosed With Takayasu's arteritis this week, after investigations for nearly 6 months. My symptoms have mainly been vision disturbances in my left eye and occassional dizziness. I had A TIA 6 weeks ago which affected my speech for about 10 minutes but nothing like that has happened since. After a CT scan I have now found out that my left carotid artery is completely blocked and my right carotid artery and left subclavian artery is extremely inflamed. I have been so lucky not to have many other symptoms but just by insisting to my GP that something wasn't right I finally have a diagnosis. I am now taking 50mg prednisolone daily and due to start methatrexate as soon as they have made sure my body is up to it. However after 6 days of prednisolone I have already started to feel a little better, the vision problems have greatly improved and this has made me feel even more comfident that I will get through this. I have a great medical team and I think as patients we need an element of optimism and stubborness to get through something like this. My mother developed Systemic Lupus Erythematosus ( another auto-immune disorder) when I was only a toddler so have seen how strong wills can get you through most things and she has shown me not to let it get me down. Hopefully I wont have to struggle too much with side effects and I am determined not to put too much 'steroid' weight on by trying to keep as active as possible. Good luck to all fellow sufferers and i really hope we all manage remission as soon as possible.
    Anonymous 42789 Replies Flag this Response
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