http://www.mdjunction.com/forums/takayasus-arteritis-discussions/feed http://www.mdjunction.com/forums/takayasus-arteritis-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Wed, 22 May 2013 06:15:31 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/10628030-hello-i-am-39-and-from-wisconsin#10628030 I have had Takayasu Vasculitis for 12 years. I live alone and the illness is taking up all my finances. I have chronic pain in my chest. alot of the time it is so bad i have a hard time breathing and i am doubled over in pain. I cannot afford all the meds to treat the illness. i have stopped going to my Rheumatic doctor because I am not happy with him. he charges me for everything. If i want to talk to him on the phone he charges $35 for the first 10 to 15 minutes. i told him i want to know ever... Thu, 18 Apr 2013 13:01:06 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/10574023-wondering-about-others-experience-with-methotrexate#10627300 Hi Tina, I'm sorry that you have had this experience with your doctor :/ It's enough having to deal with everything that comes with this disease without having to add an incompetent doctor to add to your stress. Capecodgirl is exactly right. A teaching hospital would help tremendously. I hope you find the help you need at UC Davis. :) Prepare yourself and research the disease as much as you can. Ask a lot of questions of whatever doctor you come in contact with. Ask them if they have any expe... Thu, 18 Apr 2013 07:40:58 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/medicine-treatments/10539090-actemra-as-an-option#10627274 mom2cutie - Good luck with that cocktail! How are you tolerating the Methotrexate? My hair has thinned so much. The vain part of me is really starting to take offense to it. ;)... Thu, 18 Apr 2013 07:33:19 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/10423830-takayasu-arteritis#10541921 I finally won my insurance appeal and they are now covering the Remicade infusions. My doctor is giving me a great prognosis. He said that he has patients that lead normal lives. I am doing pretty well.... Mon, 11 Mar 2013 16:32:39 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/10248522-sick-and-not-diagnosed#10541359 I have been through the same testing for a few years before the diagnosis too. Now i have a stint a pacemaker a morphone pump - and im still down sick alot do you also have the extreme pain and nasuasa all the time? They say i may have something else too besides the TA. ANy help will be appreciated. thanks... Mon, 11 Mar 2013 12:34:04 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/3759828-newbie-and-really-confused#10539733 Hi there! Like what other people have been saying, although prednisone SUCKS you have to just remain patient throughout it. Balancing medications and going to a billion doctors appointments is also extremely frustrating, but you will eventually find what works best for you. Like everyone else, some really great advice is to stay active! Even if all you can do is walk 50 metres up the street each day, then do it. It helped me both physically and mentally to start doing little walks every day. ... Sun, 10 Mar 2013 19:15:19 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/10092910-newly-diagnosed#10539715 Hello Suzy! I am 20 years old and was diagnosed about a year and a half ago. The best thing for dealing with the mood-effects of prednisone for me was to separate it over the day - so when I was on the highest amount of prednisone I was taking 25mg in the morning and 25mg at night (I have a very small body-frame so 50mg per day is a lot for me). Talk to your doctor about doing this if you aren't already. I have had TERRIBLE problems with sleeping. Not sleeping was one of the worst things ... Sun, 10 Mar 2013 19:06:37 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/3579948-hello-my-daughter-has-just-been-diagnosed#10539659 Hi Hazel, I hope you and your daughter get to read this, as you posted this a few months ago! I just posted a thread about my own experiences with Takayasu's Arteritis here: http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/10539632-sharing-my-experience-with-takayasus-arteritis I was diagnosed when I was 19, and I know that feeling of not being a normal teenager/young adult all too well. A lot of my 'friends' kind of disappeared from my life as I was no lo... Sun, 10 Mar 2013 18:41:23 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/10539632-sharing-my-experience-with-takayasus-arteritis#10539632 I really wanted to write this post in order to share my experience with Takayasu's Arteritis. When I was first diagnosed with TA, I would have loved to have come across a post like this, and I hope that anyone who has been recently diagnosed with TA and comes across this post will feel more optimistic about their diagnosis. (Googling takayasu's arteritis is kind of a terrifying thing to do, right?!) I am a female living in Australia, who was diagnosed with TA when I was 19 after almost a year... Sun, 10 Mar 2013 18:18:48 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/introductions-personal-stories/3087438-new-members/limitstart/10#10379835 Hi thought i would share my experience as to how i was diagnosed with TA. It all started with a pain in the right arm, i consulted the local general physician who advised me to do some physiotherapy sessions and after around 7 sessions i felt better.The pain again occurred after 7 months but this time around i decided to take it seriously as it was repeating itself. My blood test showed a ESR of around 110 and even my CRP was negative.I had also lost weight during the last few months and h... Mon, 07 Jan 2013 05:13:16 -0800 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/3318197-hi-new-member#10379833 Thanks for the message.... Mon, 07 Jan 2013 05:12:05 -0800 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/10226796-depressionmood-swingsfatigue#10227202 Oh this is very normal but yet you should seek help from your doctor or counseling. It is very hard to live with an auto immune disease and take all these meds. I also live in constant pain but I am seeing a physical therapist to keep moving. I also started counseling for my chronic illness. The medicines can also make you feel like this. Talk to your doctor. Good luck!! A positive attitude can make a big difference too.... Fri, 02 Nov 2012 15:01:50 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/3800792-does-this-ever-go-away#10202536 Brittney - you can have a life!!! It may be a bit different from most people's, and you may have to pay more attention to yourself than others, but life is doable. Before having my daughter, I was a singer and dancer for Walt Disney World and Universal Studios for 10 years, as well as performing numerous outside events. I have traveled. I still sing. I am actually headed back to school. Things are ABSOLUTELY possible. It may be difficult at times, but it makes the good times that much sweeter. P... Wed, 24 Oct 2012 13:51:00 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/3524004-need-friends#10202104 Also on Remicade - 2 hour infusion... Wed, 24 Oct 2012 11:16:02 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/medicine-treatments/3998709-lowdose-chemo-cytoxancyclophosphamide#10015045 Dear Hamda If you want to know the answer, ask your doctor how many cases do TA he treats or has treated. If its only a couple or so, personally I would adventure to the larger research center. They know better the most effective doses and combination of meds. They also know when and what surgical procedures are most effective or even counterproductive. I was very surprised how different the approach was from my doctor back home who I considered very knowledgeable and confident compared t... Fri, 17 Aug 2012 09:02:28 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/3984300-prednisone#10009844 Hey Britt Hang in there. I've been on prenisone since Dec 2011. I think my hair loss is from the methotrexate as well. I'm down to 10mg daily of the pred. I need surgery, but the vascular doc won't do surgery until I'm off completely. :( Phyllis... Wed, 15 Aug 2012 13:59:40 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/introductions-personal-stories/17993-hello-takayasus-arteritis-support-group-im-roy#3966220 Hi Debrah1, I don't know details about Monica state, but for my experience, I have been traveling few times using plane, for 30hours. It was long, and very tiring but I never had issues with TA. Cheers,... Tue, 31 Jul 2012 00:18:57 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/3797800-eye-exam#3849071 I went to an eye M.D. and he looked at both eyes. He found white deposits behind my retineas in both eyes. He believes that it is from having an Auto-Immune disease. It is mild right now. They can not do anything for it. I have to have my eyes monitored once a year right now. He also looked in my eyes to see if there was vasculitis in there. My eyes are clear of it. He gave me a grid to test my eyes at home. If I see any blank spots or wavey areas then I have to see him right away.... Thu, 21 Jun 2012 10:41:45 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/medicine-treatments/3797821-helminthic-therapy#3797821 Has anyone heard of treating Takayasu's Artheritis with Helminthic therapy. It is believed that hook worms have a way of calming the body's inflammation response. It has been found to help people with Crohn's, asthma, allergies and other autoimmune diseases but I can't find any mention online of it being used to treat TA. The treatment has not been approved by the FDA and you can't buy the parasites in America. I would appreciate any information anyone might have or the opinion of any medical pr... Sun, 03 Jun 2012 14:05:28 -0700 http://www.mdjunction.com/forums/takayasus-arteritis-discussions/general-support/3716194-denial#3741568 Brittney's Mom and Dad, Hang in there! My daughter is 15 and recently been diagnosed and her emotions are all over the board! I don't know exactly how your daughter is not taking care of herself, so I will speak for our situation. For us there are some things as her parent that are not negotiable. First is going to her doctor appointments, second is taking her medications, and third is going for her IV infusions. Diet and exercise are done on a pick your battle day, which means that some... Tue, 15 May 2012 06:49:15 -0700