Hi everyone! My sister was diagnosed with Wegeners five years ago.Now her disease is in remission but continues to take Medrol 16 mg daily.Does anyone know any different treatment than the one shes taking,since Medrol is well known for its long term side effects?! Wish you all the health in the world!
PS:TazLovee i hope and pray for you to learn how to go along with the disease and not letting it to ruin your life!
I Am 14 And Have Wegners The Doctors Didnt No I Had It For 6 Months And I Nearly Died Because Of Them. I Have To Take 1500mg Mycophenolate (Chemo Tablets) A Day And Others As Well I No How People Feel Who Have This Horible Illness And Am Sorry For The People Who Have It. Nobody No's How It Affects You And It Has Ruined Alot Of My Life. That Video Is Very Emotional And Touching. Taz x
I Am 14 And Have Wegners I Hate Having It Have To Take Loads Of Tablets The Doctors Didnt No I Had It For 6 Months And I Nearly Died Of It I Have Never Met Anyone With Vasculitis And My Consultant Has Only Met 2 Kids With It And He's Been Dealing With This Illness For 30 Years. No-one No's How It Feels Unless You Have It Hope Your Ok If You Do Have It. Taz x
I can't explain the feelings that I experienced viewing this video. I also have Wegener's and have never met another "weggie" face to face. Sitting here viewing these faces of others with the same and similar diseases was very moving. I hope that I'm able to attend a VF Symposium some day.
The video was very emotional. I am going to take Cecelia to Johns Hopkins for a consultation. Once you are a registered patient (and just one consultation will qualify you a one they tell me) then you can register for their longditudinal study on Wegener's wherein you are monitored annually and notified of any advancements in treatments. Might be worth considering. Wegener's is so rare it's almost impossible to meet anyone who has it. I wish you the best of luck. Margaret
@wegsmeg I've been diagnosed with Wegener's since last year April. Odd, the guy who sat beside me in treatment has it too! But you're right, it's so rare it's hard to meet others with it. The only difference is that he was 15 years older than me and my body took the abuse better than him. I had 6 treatments but unfortunately for him, he had to have 21!!!! I didn't feel so sick after he told me that.
My husband has Weg's, dx'd in Sept. '07. There are some great support groups on the web like WGdiscussion on Yahoo groups. There are more weg's patients than anybody ever realized.
I have Wegeners. I have never met another person face to face..I struggle everyday, and am taking Methotrexate, as well as Prednison..Hope to be back to my old self some day..Arthritus sure hurts alot, and my doctors ignore the pain I'm in and tell me to take Tylenol..I want to be free from pain.
Hi: I saw your post on the vasculitis foundation symposium video of 2006. My daughter, Cecelia who is 21 was diagnosed with Wegener's in December of 2006. She has been through a lot this past year but is doing quite well at the moment. She is back at school and work and leading a normal life. She still takes Imuran and will continue to do so until next Fall but they did take her off prednisone in December of '07. How are you doing at the moment?
Hi Margret, I thank you for contacting me, as I want to have dialog with Wegeners patients. I wish your Daughter well, and know this dieseas can be treated and put in remission. I know that with Wegeners, it's important to keep an eye on kidney function, as well as a lot of other blood counts (white cell ect) Make sure she stays away from diffrent types of health foods/drinks, as they sometimes boost the immune system, and can be harmfull. Good luck, and good health.
Hi Frank: I'm going to take Cecelia to Johns Hopkins for a consultation. Once she is a registered patient at the vasculitis center (they tell me one consultation is all you need to be registered) she can then enter a longditudinal study. Something to consider maybe?
whats wegener's? is it related to vasculitis?
cydonianman 3 years ago
Yes, Wegener's Granulomatosis is a type of vasculitis.
SZurich 3 years ago
Hi everyone! My sister was diagnosed with Wegeners five years ago.Now her disease is in remission but continues to take Medrol 16 mg daily.Does anyone know any different treatment than the one shes taking,since Medrol is well known for its long term side effects?! Wish you all the health in the world!
PS:TazLovee i hope and pray for you to learn how to go along with the disease and not letting it to ruin your life!
baimaenervezi 3 years ago
hi i take cellcept suppose to be alot kinder to the body hope your sister is well..
lava456 3 years ago
my best friend has it she rote below me :(:( love her very much...xxxxxxx
lilmissflirti 3 years ago
I Am 14 And Have Wegners The Doctors Didnt No I Had It For 6 Months And I Nearly Died Because Of Them. I Have To Take 1500mg Mycophenolate (Chemo Tablets) A Day And Others As Well I No How People Feel Who Have This Horible Illness And Am Sorry For The People Who Have It. Nobody No's How It Affects You And It Has Ruined Alot Of My Life. That Video Is Very Emotional And Touching. Taz x
TazLovee 4 years ago
I Am 14 And Have Wegners I Hate Having It Have To Take Loads Of Tablets The Doctors Didnt No I Had It For 6 Months And I Nearly Died Of It I Have Never Met Anyone With Vasculitis And My Consultant Has Only Met 2 Kids With It And He's Been Dealing With This Illness For 30 Years. No-one No's How It Feels Unless You Have It Hope Your Ok If You Do Have It. Taz x
TazLovee 4 years ago
I can't explain the feelings that I experienced viewing this video. I also have Wegener's and have never met another "weggie" face to face. Sitting here viewing these faces of others with the same and similar diseases was very moving. I hope that I'm able to attend a VF Symposium some day.
SZurich 4 years ago
The video was very emotional. I am going to take Cecelia to Johns Hopkins for a consultation. Once you are a registered patient (and just one consultation will qualify you a one they tell me) then you can register for their longditudinal study on Wegener's wherein you are monitored annually and notified of any advancements in treatments. Might be worth considering. Wegener's is so rare it's almost impossible to meet anyone who has it. I wish you the best of luck. Margaret
wegsmeg 4 years ago
@wegsmeg I've been diagnosed with Wegener's since last year April. Odd, the guy who sat beside me in treatment has it too! But you're right, it's so rare it's hard to meet others with it. The only difference is that he was 15 years older than me and my body took the abuse better than him. I had 6 treatments but unfortunately for him, he had to have 21!!!! I didn't feel so sick after he told me that.
Cheesewyck 7 months ago
My husband has Weg's, dx'd in Sept. '07. There are some great support groups on the web like WGdiscussion on Yahoo groups. There are more weg's patients than anybody ever realized.
VEScott 4 years ago
I have Wegeners. I have never met another person face to face..I struggle everyday, and am taking Methotrexate, as well as Prednison..Hope to be back to my old self some day..Arthritus sure hurts alot, and my doctors ignore the pain I'm in and tell me to take Tylenol..I want to be free from pain.
itsallgood20002 4 years ago
Hi: I saw your post on the vasculitis foundation symposium video of 2006. My daughter, Cecelia who is 21 was diagnosed with Wegener's in December of 2006. She has been through a lot this past year but is doing quite well at the moment. She is back at school and work and leading a normal life. She still takes Imuran and will continue to do so until next Fall but they did take her off prednisone in December of '07. How are you doing at the moment?
Margaret
wegsmeg 4 years ago
Hi Margret, I thank you for contacting me, as I want to have dialog with Wegeners patients. I wish your Daughter well, and know this dieseas can be treated and put in remission. I know that with Wegeners, it's important to keep an eye on kidney function, as well as a lot of other blood counts (white cell ect) Make sure she stays away from diffrent types of health foods/drinks, as they sometimes boost the immune system, and can be harmfull. Good luck, and good health.
itsallgood20002 4 years ago
Hi Frank: I'm going to take Cecelia to Johns Hopkins for a consultation. Once she is a registered patient at the vasculitis center (they tell me one consultation is all you need to be registered) she can then enter a longditudinal study. Something to consider maybe?
wegsmeg 4 years ago