Diagnosed, but lucky (I hope)

[GARYfromBOSTON]

My story so far... I felt crappy from at least early spring 2009, it came on slow thankfully. Fatigue, systemic joint pain that moved around, skin issues. I got a physical in the summer of 2009 and saw my primary doctor a few times. In the fall of 2009 things got worse. My primary doc took basic blood tests and referred me to a Rhumey (lucky for me Dr. Dwight Robinson at Mass General Boston). I got an appointment for late December with Doc Robinson. During December everything went down hill, skin having obvious problems, joint pain problematic. I saw Doc Robinson the end of December 2009 and he took a bunch of labs and put me on low dose 10 mg prednisone. Over the next week my calves seized up. Tuesday Jan 5th 2010 I could not get out of my chair at work due to calf muscle issues. That day I went to Mass General ER. For most of the day they could not figure out what was going wrong. Near the end of the day, CK level blood test came back over 2000 (supposed to be 250). It's a marker of severe muscle inflation/breakdown. Admitted to hospital immediately based on CK level. Took another week of biopsies, cat scans, MRIs, blood tests, x-rays, and many specialists to diagnose what I had. I was called the “interesting case”, felt like I was on the show “House”. The kicker was when my c-ANCA came back high. After running further tests issues were found in my kidneys and liver. Upper respiratory was fine (this threw them off initially). Lucky for me, after 3 large injections of steroids and then prednisone daily starting at 60 mg, my kidney function returned to normal, my skin cleared up and my joint and calf pain has dissipated. To fix my overactive autoimmune, they've put me on a new bio drug called Rituximab (takes the place of Cytoxan). I get another injection of Rituximab on Jan 26. I realize that compared to most with WG cases I dodged a major bullet due to the slow onset and early detection of WG in my case. My main Rhumey is going to be John Stone at MGH, who seems to be expert in the disease. Very scary, but very hopeful.

[Jack]

Hi Gary and welcome to the forum.
Sounds like you were very lucky with your diagnosis and have probably got away without much damage. Your medication also seems to be in good hands. Hope it continues to work for you and you quickly reach a state of remission.
Makes a change from some of the horror stories we get on here!

[Sangye]

Hi Gary,
Welcome to the group! Wow, you really did dodge some major bullets. It's also amazing that they started you on rtx (rituximab) instead of the usual ctx. Because of the extraordinary price of rtx, you usually have to "fail" on ctx before insurance will pay for rtx. I can't tell you how fortunate you are not to have to go through ctx. Between the short-term and long-term effects, it's a vile drug.

You're also incredibly lucky to be starting this journey with a Wegs specialist. John Stone is listed as a VF consultant doctor-- not an easy list to get on! You'll be in good hands. And most importantly, you won't have to suffer with me nagging you to get to a Wegs doc!

[GARYfromBOSTON]

Jack and Sangye, thanks for the kind words and encouragement. I hope to be an active member of this community, supporting others and learning a lot!

[pberggren1]

I'm glad to hear you have John Stone as your main Rheumy. He is one of the best in the world when it comes to Vasculitides.

[elephant]

Welcome Gary! So glad you mad it. I look forward in hearing your progress and contributions on your WG jounrney.

[Kimbangu]

Gary your case is very very similar to my own- early detection, no upper respiratory involvement.... and very scary! In the UK I don't think they use this rituximab stuff. They infuse me me with 1200 mg cyclophosphamide every 3 weeks at present. They started me on 60 mg prednisolone as well. I am down to 30 now. What dosage of pred do they have you on at present?

Finding this forum was, for me, a big step forward in coming to terms with WG. I learned early on that just typing "Wegener's" into the Google search box isn't such a good idea. There is a huge reservoir of knowledge here. ... You'll find the "search" function particularly useful too.

[Jack]

I believe Rituximab was approved by NICE for use in the UK for auto immune diseases in 2007.

[GARYfromBOSTON]

Gary your case is very very similar to my own- early detection, no upper respiratory involvement.... and very scary! In the UK I don't think they use this rituximab stuff. They infuse me me with 1200 mg cyclophosphamide every 3 weeks at present. They started me on 60 mg prednisolone as well. I am down to 30 now. What dosage of pred do they have you on at present?

Finding this forum was, for me, a big step forward in coming to terms with WG. I learned early on that just typing "Wegener's" into the Google search box isn't such a good idea. There is a huge reservoir of knowledge here. ... You'll find the "search" function particularly useful too.

Kimbangu, we'll have to compare notes! I'm on 50 mg prednisone for 3 weeks, then I think it starts coming down. Yes, the first wegener's google searches totally freaked out my wife. But as we are getting educated, terror has receded. And this community looks wonderful.

Where are you in the UK? I have family in Kent and Essex, just visited last summer and had a grand time. BTW, are you originally from Africa?

[renidrag]

You are lucky to be in MGH. BU has a great department also, Sangye told me so. I am seeing a Pulmonary South of Boston, no I haven't changed yet all you naggers, but after the next appointment if little change I will search out, as ordered, my wegs specialist. I feel good, I am working although desk job, not with the tools. I do get tired but overall it is good. Mine came on with lung involvement but not kidneys. Good luck Gary, the people here are incredible and extremely helpful.
Dale, South of Boston