Giant Cell Arteritis (GCA) / Temporal Arteritis - Support Groups

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Support Groups

List of some support groups for patients with Giant Cell or Temporal Arteritis:

Allergies & Immunity : Vasculitis Support Group
https://www.medindia.net/healthnetwork/support-groups/vasculitis/faqs.htm

PMR and GCA Support Group
http://www.pmr-gca.org.uk/

Giant Cell Arteritis Support Group
http://www.drugs.com/answers/support-group/giant-cell-arteritis/

I Have Temporal Arteritis
http://www.experienceproject.com/groups/Have-Temporal-Arteritis/91208

Vasculitis Foundation
http://www.vasculitisfoundation.org/support

Gold Bamboo - Vasculitis Support groups and discussion forums
http://72.3.142.34/topic-t1830-dc24--vasculitis-support-experience-self-help.html

SteadyHealth.com
http://www.steadyhealth.com/support_groups_vasculitus_t60338.html

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mememania

Hello, I was diagnosed with giant cell temporal arteritis via my Neurologist. I've had an MRI that was okay, blood work showed #38 for temporal arteritis. I had a Biopsy done on both the left and right temples. It showed negative. My surgery doctor stated he removed very large parts of two vessels on my left side where I have the most pain. For what it’s worth he stated I did not have giant temporal arteritis. My Neurologist stated a negative result does not definitely rule out the fact that you still have giant cell temporal arteritis. So today I’m starting my first treatment on 2 20mg of Prednisone a day. I’m scared of the Prednisone; however I guess I’m more scared of the disease. Is there anyone I can talk to, it would really be helpful…………..Thanks, Diane

Guest

i to am suffering with this disease.it is not fun an i am on pedisone 2 kids of ra meds still got the problem after 15 months. was told it take years got get this out of my arteries.but i don't have years so i just deal with it. head hurts.temples hurt and i have movement in the top scalp,. but the neck kills me at times. an this pc is very hard on people with this ta. granny nelda

dinah

i was diagnosed with temporal arteritis and started on high doses of prednisolone in April 2009. About 2.5 years later i was weaned down from 1mg a day to zero. I am not rid of the disease, however, I still have symptoms, ie tender scalp, occasional temple pains and 'wriggling feelings', sometimes jaw ache when chewing. I find these only occur on days when I have forgotten to take a dose of 'Cat's Claw' aka Uncaria tomentosa, a South American plant extract that is an effective anti-inflammatory and anti-bacterial agent [increasingly studied, see MedLine]. If I then take some Cat's Claw, symptoms go away again. It is not fattening, it does not waste my muscles, and it does not thin my bones or weaken my eyesight. Long term (cumulative) effects of catabolic steroids were very bad in my case, leading to wasted muscles and accelerated cataracts (in turn related to the detached retina that followed the supposedly straightforward and reliable cataract operation that went wrong). I have had one relapse on this regime, which caused me nausea, anorexia, malaise and an increase of sensations in my temple which were not controlled by Cat's Claw. I took one 10mg dose of prednisolone at that point and fully recovered to the non-ill previous state with its controllable symptoms on 900mg (=3 standard capsules from H and B) a day. So I have some steroids as a standby but am not continuing to build up further problems for my poor body on a regular basis. I'd love to see a large scale study of this for symptom-free maintenance. I do not have any financial stake in this stuff by the way, but just want to share as I have personally found it close to miraculous not only in the ways described above but for general immune boosting (first signs and I up my dose, and bingo!) and joint pain relief. So far I am not aware of any adverse effects though some people may be allergic to plants in the Rubiaceae family whatever that is, and I am NOT a medically qualified person so this all just patient report.

Dear Sir

This is Senthil kumar from Mogappair west , my wife is having severe headache [one side and particular point between nose and ear ] .

Attached reports is for your kind info , requesting to you kindly go thru the same and help us on this ,She is suffering for the past 2 months . If we will get the appointment from your side , then we will come down and meet you in person

Extend your support for fixing the problems once for all .

Thanks in advance




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