Came here today after a sisters friend was diagnosed with Takayasu during the weekend...and most of the things you are explaining here were her symptoms. Thank you so much for the information
I struggled with issues for four and a half until they diagnosed me with takaysu. I had a heart doctor look at me and say I had a leaky heart valve at age 23, I also saw a rheumatoid arthritis that said I was fine. I struggled with depression anxiety because no one was believing my pain I was having. three blocked arteries on my left side and had to have heart surgery November 2017 to fix the leaky heart valve that was rubber at that point the heart surgeon said.
Oh my god why can't my rheumatologist and other Drs explain like this!!! Thank you I have Takayasu's arthritis and no pluse from the waist down. And the upper half veins are narrowing now xxx
Perhaps it's because you can look it up on RU-vid and the general Internet where you can take your time and take it in. Teaching is very time-consuming.
OMG, I going through this right now. I had all those symptoms, especially the sight lose, but then the bi-lateral biopsy showed nothing. Luckily my neuro is keeping me on prednisone as a precaution and I'm seeing a 2nd opinion rheumatologist mid-January. THANK YOU for this newer information.
I was diagnosed with TA a year back I has all the symptoms went through multiple mini stroke September last year I had Stroke and bed paralyzed from left side since then
I was out on prednisone but gained 30 kgs in 6 months which now I’m switched to metheraxate once a week I still get seizures and feel unconscious time to time this disease is very hard to live with
Thank you, I get my diagnosis tomorrow and now I'll have enough information to discuss the my doctor what treatment options are best for me. I have had a severe case of Polymyagia for about 20 months and am already on Prednisone. Though the doctor that did the biopsy and the doctor that did the ultrasound said nothing, there was a very definite, Ah Ha vibe about them. So we'll see.
Great video! There's also menaquinone (vitamin K2 MK7) to prevent osteoporosis and restore blood vessel health. Menaquinone is the bacterial equivalent of ubiquinone thus it is being studied in the Netherlands to mitigate fatigue in Parkinson's patients.
There are exceptions. I have PMR/GCA. I have been on prednisone for 10 years. Diagnosed at Mayo for the GCA in 2017, but biopsy was 5 years prior to that. Biopsy report written with ambiguous language, so I was under-treated. Mayo diagnosed after viewing actual biopsy, not just the report. Also took Actemra, but that did not work for me. I have probably had PMR for about 15 years. Was misdiagnosed for a long time. As I write this am on 7 mg, just finished a short burst of 20mg. SED of 85. developing serious stomach bleeding, so may talk to rheumatologist about a monthly injection, deep muscle prednisone instead. This can be a difficult illness. 18 months is "cookbook" and is the #1 complaint of patients on support group sites is doctors tapering too soon. Tapering too fast triggers flares. There was a study where patients had one temporal artery biopsy at onset, then another two years after steroid treatment. While many showed improvement of symptoms at two years, the 2nd biopsy showed a different outcome. The patient still had GCA. This illness is difficult to treat.
I was diagnosed as takayasu with amlyoid.and our doctor suggest Tocilizumb injection for every month( 200 mg) . But I want to know steroid is possible for this disease.thanks in advance
Please be advised if vision lost within 24 hours start treatment the patient still preserved light and it's getting strong however he cant see Is there any chance he get much less of his vision
