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02/29/2012 09:39 AM

Need friends

Samorah
 
Posts: 15
New Member

Hi everyone, I am new here. I have had Takayasu Vasculitis since 2002. I am now doing Rituxin infusions. It is a little hard for me to accept this illness. Had it since I was 28 years old and have had to change my lifestyle dramatically. People at work have turned their backs on me because the do not understand nor want to understand what is going on with me. 2011 was a very hard year for me very depressed chest and lungs in severe pain all year couldn't find any meds to help until Rituxin. I get fatigued, short of breath, memory problems, chest and rib pain. I need to talk about what is going on with people who understand the illness. So i won't be judged. Sad
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03/01/2012 05:33 AM
capecodgirl
Posts: 39
Member

Sorry to hear of your troubles. What meds have you tried? Why do you have severe pain and memory problems? Why don't you talk a little more about your condition, treatments,etc.

03/01/2012 06:33 AM
Samorah
 
Posts: 15
New Member

I am on Methotrexat, Hydroxychlor, Lyrica, Rituxin. I also have Fibromyalgia so that is some of my pain. I have chest and rib pain. All my joints and muscles hurt. i get short of breath and very fatigued. Dizzy at times and my memory and concentration are low. i am sensitive to cold. my hands and feet turn blue. one time they could not find a pulse in my left arm. weather effects me and my emotions: being startled, angry etc. aggrevate my chest. Rituxin has helped decrease the pain in my chest and ribs. A lot of times my torso is hot (i even sweat at times) but my limbs (arms, legs) are ice cold. Unsure

Post edited by: Samorah, at: 03/01/2012 11:36 AM


04/23/2012 03:54 PM
kateset23
kateset23Posts: 2
New Member

I'm sorry for what you spend, on April 2011 for a month had a high fever headache coughed sweat a lot, until my dr I go out into the hospital, I had not met until they told me it was that the heart was inflamed aorta called Takayasu"s arteritis i am with prednisone 60 but every time I go down the inflammation goes up, 1 ml methotrexate once a week, 5 mg cyclobenzapr for sore muscles, tramadol if pain is very strong, perdide worst thing was that I have no health insurance work Dr. I saw I could not do anything for me left in the air and not know what to do at the end I found a new Dr. very nice trying to help me with one of the best rehumatology of new york, want to try a new drugs.

I have to get blood test every month for check how is my inflammation when I fall I feel bad doses and the last time I laid hands purple, I have almost a year at this dose and it is too long and want to get off prednisone to 5 ml, I hope you feel better is difficult so we are going but we are here to communicate god bless you. i hope my history help you. Smile


08/11/2012 06:18 PM
kateset23
kateset23Posts: 2
New Member

Hello everybody my dr try i new medication my inflamation down , REMICARE by infusion over 4 hours helps but i still have pain in my joins and all my body ask your doctor about this , i hope this information help god bless

10/24/2012 11:16 AM
brittneysdad
Posts: 4
New Member

Also on Remicade - 2 hour infusion
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