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View Full Version : Diagnosed, but lucky (I hope)



GARYfromBOSTON
01-17-2010, 10:24 PM
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
01-17-2010, 10:44 PM
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
01-18-2010, 01:16 AM
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! :D

GARYfromBOSTON
01-18-2010, 05:59 AM
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
01-18-2010, 07:57 AM
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
01-18-2010, 08:25 AM
Welcome Gary! So glad you mad it. I look forward in hearing your progress and contributions on your WG jounrney.

Kimbangu
01-18-2010, 07:17 PM
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
01-18-2010, 07:49 PM
I believe Rituximab was approved by NICE for use in the UK for auto immune diseases in 2007.

GARYfromBOSTON
01-18-2010, 10:53 PM
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
01-19-2010, 08:28 PM
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

Kimbangu
01-19-2010, 10:11 PM
I am approx. 20 miles North of Dundee, Scotland. No, I am not African I'm a Scot. I was in shock when I was diagnosed because I had never heard of the condition before. I rapidly learned that looking at WG photos on the web is not such a good idea........ I get all my WG info through this site now, never look at anything else. It keeps me feeling cheerful....! The regular contributors on here are brilliant.

During the diagnosis stage they stuck so many needles into me that every time I heard the sterile packaging being ripped open on the needle, it made me want to scream. but you get used to it.

Couple of problems I have had ( apart from the pred side effects, and I am getting PLENTY of those) are as follows;
1) people hear you have this serious disease and then when they meet you, you appear to be the picture of good health. They find this difficult to understand.
2) If you tell the people you know that you have got "Wegener's" they will always go away and look it up online, then they come back at you a couple of days later, full of deepest sympathy. You can always tell when someone has been having a sneaky google for "Wegener's".......Which isn't always helpful. I usually just say I have "vasculitis" now.

Yep keep in touch and welcome to the new reality- the new normal! - It's not so bad. BUT there's a long journey ahead and this forum helps me a lot.

elephant
01-19-2010, 11:00 PM
I guess my friends don't look it up. No sympathy or empathy. I sure had some of my family members look it up. Also two of my family members joined this forum to understand the disease more. Many of my friends just don't get it.

GARYfromBOSTON
01-20-2010, 12:56 AM
Kimbangu, if you look ok on the outside but have WG issues on the inside I'm sure some in our society are not very sympathetic. From some of the posts here it seems like even family and friends are not always supportive. I'm very lucky that my wife is 100% understanding and behind me. I'm kind of worried what they'll think at work after I've been out a few weeks with WG issues then come back looking better than I have in a year.

elephant, sorry to hear you are getting little empathy. We need it! You'll just have to get it from us! ;)

Dale, I wonder how close we are. I live in Sharon (near Foxboro).

Sangye
01-20-2010, 03:03 AM
Kimbangu-- I giggled at your "sneaky google" comment. So true.

Elephant-- how does your friends' lack of empathy manifest. Do they completely ignore that you're sick, do they outright question it, etc...? I'm asking because I've also encountered this from some friends (thankfully not universally) and have learned some good coping strategies in therapy. Joining this group made all the difference in the world for me. True for most of us, I'm sure!

Dale-- It's best to get started with a Wegs specialist while things are going okay. Wegs can change rapidly and you want your team in place. It's also good for them to see you when things are going alright, as that gives them a better idea of what that looks like for you. This is my not-so-cleverly disguised Nag.

big perks
01-20-2010, 09:17 AM
Great to hear you are getting better, your story is so similar to mine - diagnosed last year following chronic fatigue, loss of appetite and pain in legs that let me bed ridden for over a week, the final straw being not able to walk out of my exams! I too have had 2 doses of rituximab, the breakthrough Wegener's drug, thanks to my WG doctor researching other drugs available for the treatment of WG with less side effects than cyclophosphamide.
Loved the story about google search - having been advised not to by my nurse, I couldnt resist - immeadiately regretted it though. The lack of information out there is appalling, just glad I found this forum to get some proper knowledge on this disease and its comforting to know that you are not the only one going through it.

elephant
01-20-2010, 09:27 AM
Welcome Big perks so glad you got the right treatment. How are you feeling now. Are you on Prednisone?

big perks
01-20-2010, 09:33 AM
Thank you elephant. I am currently doing well (fingers crossed)- I am back to university and taking each day as it comes. I am on 7.5mg of prednisolone my "maintenance dose" as my doctor refers to it, which has been reduced from 60mg last May - I dont miss counting out 12 steroids every morning!!!!
How is your Wegeners elephant? Hope you are well.

GARYfromBOSTON
01-20-2010, 09:44 AM
big perks, nice to meet you. It is very comforting knowing you and others had a similar experience to me and have great outlooks! We'll have to compare notes as we go.

Where are you from?

renidrag
01-20-2010, 10:57 AM
Big Perks--Alot of incrdible people, here good luck and glad you are doing well. Getting off the pred is a biggie for me.
still not able to put in an eight hour day yet but company has been great to me.

Gary: We should have coffee sometime with the wives. Mine is also supportive, had to watch her shovel snow last week end. We are in Randolph. Small world.

elephant
01-20-2010, 11:29 AM
I am not in remission yet, but trying to get there. I am slowly reducing my prednisone. I have been up and down with 60mg of prednisone and here we go again down to 5 mg. I have been told it's going to be tough because my lungs and sinuses don't like it. I am doing 90% most days, and realized recently that I will never get back to 100%. That is ok. I am a fighter and keep going. thanks for asking... What are you studying at the University Big Perks?

GARYfromBOSTON
01-20-2010, 12:10 PM
Renidrag, coffee's on me. Maybe next month when I'm back at work we can get together with our other halves as you suggest. I'd love that and so would my wife. Hope you're a DD guy ;)

big perks
01-21-2010, 09:09 AM
I study law at university elephant - its hard work but i enjoy it ! The lecturers were all very supportive last year when i first took ill with wegeners.
Gary - i come from Middlesbrough, a small town in the north of England. Its amazing to be talking to people the other side of the Atlantic about Wegeners!
Hope everyone is well

elephant
01-21-2010, 10:12 AM
That's great Big Perks! It is really neat to talk to people all over the world and country.