Rose
05-27-2011, 08:47 PM
Hi all. I was diagnosed in March 2008 after suffering acute symptoms for 6 months. I say "acute" as I am sure that the terrible "gut ache" and other gastrointestinal problems that I suffered from for over 18 years and which was put down to Yuppie Flu (or hypochondria) were WG related. My acute symptoms were classic WG starting with a runny nose, hearing loss, painful joints and muscles. daily rises in temperature returning to normal in the evening and night sweats. Symptoms that became worse as time went on. In February 2008 feeling extremely ill, unable to walk because of joint pain and achilles tendonitis I was admitted to hospital. Microscopic blood and protein in my urine and a very rapid heart rate had been found when I was referred to a specialist. Within a few days in hospital, following x-rays and blood tests I think my doctor was pretty sure of the problem. As one of the nurses said "someone was listening in class" A fine needle biopsy of my lung was performed which could not confirm WG but was able to rule out cancer or TB. I then had a biopsy of my kidney which confirmed my doctor's suspicions. I was placed under the care of a nephrologist and commenced treatment of pulsed solumedrol and monthly IV cyclophosphamide x 6 . I responded well and was able to achieve drug induced remission after the completion of cyclphosphamide. The drug of choice to maintain remission was Imuran 100mgs daily (I could not take methorexate as I had developed drug induced hepatitis 3 months into my treatment) At first I seemed to tolerate the Imuran well but 5 weeks into the treatment I developed severe vomiting and stomach pains. I then started on Cellcept 1.5G daily in January 2009 and so far so good.
Today my kidney function remains around 50%. I occasionally get some roving joint and muscle pains and sometimes I just ache. Sangye's tip on Vit D has really helped there. My sinuses are back to almost normal which is such a relief and I dont have that awful "gut ache" that I suffered from for over 18 years. I am fairly fatiqued but can do my housework and shopping. My cellcept was recently changed to the generic because of costs (my insurance refuse to cover it because it is 'off label') I am back on the brand cellcept as my creatinine levels had started to rise. I am doing OK.....I could be better but I could be worse.
I do have a problem in that I have been having frequent UTI"S. Last week I had a cystoscopy done and I am told my problem is gynaecological which will almost certainly require surgery. I will see the specialist next week to confirm. Surgery is a concern at any time but with the WG and immunosupressants......... I don't have too much confidence as there are no WG specialist in SA as such, there is no vasculitis center and I have come across more than one doctor who has never heard of the condition. Yes, I am concerned.
I have been a "lurker" for some time. Thank you all for sharing all your experiences. I have learned such a lot and now that I have finally posted I hope to become a regular contributor to the forum.
Today my kidney function remains around 50%. I occasionally get some roving joint and muscle pains and sometimes I just ache. Sangye's tip on Vit D has really helped there. My sinuses are back to almost normal which is such a relief and I dont have that awful "gut ache" that I suffered from for over 18 years. I am fairly fatiqued but can do my housework and shopping. My cellcept was recently changed to the generic because of costs (my insurance refuse to cover it because it is 'off label') I am back on the brand cellcept as my creatinine levels had started to rise. I am doing OK.....I could be better but I could be worse.
I do have a problem in that I have been having frequent UTI"S. Last week I had a cystoscopy done and I am told my problem is gynaecological which will almost certainly require surgery. I will see the specialist next week to confirm. Surgery is a concern at any time but with the WG and immunosupressants......... I don't have too much confidence as there are no WG specialist in SA as such, there is no vasculitis center and I have come across more than one doctor who has never heard of the condition. Yes, I am concerned.
I have been a "lurker" for some time. Thank you all for sharing all your experiences. I have learned such a lot and now that I have finally posted I hope to become a regular contributor to the forum.