my name is Jill and it’s been along while since I’ve posted anything.
I was diagnosed in 1999. Aged 39. Despite being very unwell for months and being ‘fobbed ’ off by my Gp. By the time I was diagnosed I had Saddle Nose deformity.
Like alot of you even as a nurse I was very scared and felt alone. There were not many support groups available back then. I helped start one in Essex where I lived at the time. I now live in Suffolk.
I have been a patient at Addenbrookees under Professor David Jayne and his brilliant team for many years and have received years of Rituximab which has successfully kept me in remission.
I wanted to post my story to try to try to reassure those newly diagnosed and possibly starting treatments that there is light at the end of the tunnel. At this scary time for you and your families.
Today we have so many more treatments and professionals much more aware and knowledgeable of this disease than when I was diagnosed. I underwent a kidney transplant in 2020. Nothing to do with Vasculitis ( congenital renal abnormalities) and me and ‘Sidney’ the kidney are doing well.
I was informed that my chances of rejection are low due to years of immuno suppressive therapies.
Subsequently I’m on low doses of anti rejection medication. I’ve had no Rituximab since 2019. But have yearly follow ups at Addenbrookees.
Wishing you all a Happy and please god healthier 2024. 🙏🏻
Jill
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Essex-jill
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Thanks Rob. I just remember feeling so alone when newly diagnosed and these groups are so beneficial to everyone and offer reassurance. I’m also a member of The Lauren Currie Twilight Foundation -Vasculitis Support Group.
Many thanks for your upbeat post. I personally found it helpful and supportive as going through a difficult time with diagnosis of vasculitis since August. The rheumatologist is supportive but admits to being rather overwhelmed by the complexity of the condition.
Hello Jill, I'm Larry. Living in Florida USA. Even with the treatments that are available today, it doesn't matter if you're not diagnosed early enough as that is the key to success. Due to the rareness of the disease and doctors not being trained properly, it is often missed during the early stages. I went through a handful of different doctors and about 4 months of sheer hell before the disease almost killed me. My kidneys shut down to where my GFR was 6 and the Hospitalists didn't think I was going to make it. Lucky for me, a really good Nephrologist came off vacation and saved my life. He was very knowledgeable of Wegener's and was able to identify it as C-Anca GPA. He has treated and managed my disease for the past 6 years. I see him every 3 months with a full set of labs and I actually just saw him this week. We had a very emotional visit as we discussed exactly what I'm talking about in this reply. He is close to retirement and said what he sees in the young doctors is disappointing that they don't seem to be trained well enough to deal with this kind of disease. I asked him why doctors don't routinely run the Anca blood test just as a matter of course when someone has symptoms that don't seem to fit any of the standard diagnosis. He said they just don't think about it because it's not that well known. The problem with that is what happened to me and I'm sure a lot of others. It's caught after the major damage is done. The one thing I didn't do was see a Rheumatologist because I did not think my symptoms were anything that they would deal with. In hind sight, I probably would have a better outcome.
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