So Happy to Find This Website

[RPylican]

Hi Everyone ~ I can't tell you how happy I am to find this website. I was just diagnosed with Wegeners in April 2010 and have been trying to educate myself as much as possible since then. While the medical descriptions of this disease and it's treatments on the web are very helpful, and my specialists have been fantastic with the informaiton they have provided me, I do not personally know of anyone with WG so it's nice to connect with others that are experiencing some of the same things I am.

My story is better than most because we caught my WG so early. I am 45 years old and, about 8-10 months ago I started noticing pain in some of my joints that would flare up for a couple days and then disapear. By January my knees and feet started hurting so bad on a daily basis that I walked around with a limp all the time and everyone was asking me what I had done to myself. I was also experiencing severe cramping and stiffness in my muscles, especially my calfs. I finally went to my doctor when I had some time, although not during a severe flare up, and his first thought was arthritis so he took x-rays of my legs and feet but found my joints in perfect condition. He put me on Indmethacin and gave me Percocet for the pain but told me that, if it did not help to return. I didn't take the medication because it upset my stomach and, even though I still had muscle and joint pain, I just dealt with it, thinking that I just needed to get myself in better shape. The pain wasn't so bad in the morning but was so bad at the end of the day, that I just sat in a chair and cried, thinking I couldn't live in this much pain but not knowing what to do because it just didn't make sense. I was exhausted all the time. The first week in March I went to the Mountains on a girls retreat weekend and my left foot started swelling up over a couple of days. My doctor told me to get to the ER to rule out a blood clot, which I did, and there was no blood clot. I returned to my retreat and the next day my right foot started to swell. I left that day and that night when I got home my right hand swelled up and was in terrible pain. The next morning I went back to my Dr., who took x-rays but also referred me to a Ruematoligist. I was able to get in within a week and, while the initial bloodwork that my regular Dr. ordered showed a Ruematoid factor present, she knew that all of the bloodwork and symtoms did not point toward Ruematoid Arthritis. She said she believed it was autoimmune but didn't know what so she ordered a full scope of lab work, including blood and urine, to find out what it was. She also put me on, and weaned me off, a low dose of prednisone for 12 days which did help my symptoms. When I returned the following week she told me that it looked like Wegeners and was referring me to a Nephrology Specialist. She also sent me for a lung x-ray that day. Within 10 days I had my first appt with with the Nephrology Specialist and by the 15th of April I had a Kidney biopsy, which confirmed my WG. Fortunely my lung x-ray showed no effects of the Wegener's in my lungs so far.

Originally my Nephrology Specialist started me on 40mg of Prednisone a day, which made me feel like a new person. It relieved my muscle and joint pain dramatically and gave me more energy than I'd had in a year! Once the diagnosis was confirmed though my biopsy he lowered my Prednisone to 20mg a day and put me on 50mg of Cyclophosphamide a day as well as Bactrim 3x a week. So far I'm not experiencing many side effects from the medication other than some acne from the Predisone. His plan is to try to get me off the Cyclophosphamide within 3 - 6 months and put me on Imuran. Since he lowered the Prednisone I do notice some tightness in my leg muscles, occasional slight joint pain and muscle cramps in my feet but nothing compared to what I had before. I can even walk the dog again!

I am very lucky because they caught my WG so early. Besides my Kidney, the only other area that the WG seems to have shown up is in my nose where I have some sores and bleeding that have not cleared up. Both of my specialists are fantastic and have explained what they know about Wegener's in so much detail that I find it hard to even think of questions when I visit them. They also encourage me to call anytime and have me scheduled for appointments every 6 weeks at this point.

I'm sorry this is so long but it is so nice to have someone out there that understands this, and can talk to me from my point of view. I have a very supportive family who takes good care of me but it's just nice to connect to others facing the same challenges as I am.

Thanks for letting me share and I'm sure I'll be talking to all of you regularly.

[JanW]

RPylican - Welcome to this site. Sorry you had to find us.

It's amazing to me that I am now seeing so many people, who, like myself, are struggling with foot pain through this disease. I have bone edema on my left ankle and foot pain in the right foot as well. Have started physical therapy but it's a slow road for sure -- I have been struggling through this for almost a year -- diagnosed with WG in January and have already had surgery to correct a subglottic stenosis.

You'll find tons of great people on this site -- it's a wonderful support group.

[elephant]

Hi RPylican, welcome! I don't mean to sound like a pooper, but it sounds like you are still showing signs of Wegeners being active....nose bleeds.
Your doctors are wonderful and knowledgeable, but you still need to check out the Vasculitis Foundation for a Rheumatologist that specializes in Wegeners Disease.
I am a RN and waited a full year to get to a Wegeners specialist, and I got worse ( lung nodule that had to be removed..it was confirmed Wegeners). I was not on proper medicines...under treated. I was embarrassed to say anything on this forum about it because I felt I should of known better, since I'm in the medical field. So I am a nagger, but I just want everyone on here to get the best care.

[jola57]

elephant, no need to feel embarrased, I am an immunologist and it had to be at a point where I couldn't move before I went to see a doc.
Hi RPylican, sorry to have to welcome you here but glad you found us. It seems like you are in good hands and the treatment is working.

[RPylican]

Hi elephant ~ I don't think you sound like a pooper at all I love that I have a place to go to talk and find the information you are giving me here. I agree, I think my WG is still active, mostly because I'm still feeling slight pain in my muscles and joints whenever I'm the least bit active, but also because of my problems with my nose. How long after I start taking my medications (Prednisone and Cytoxan) should I feel relief or expect it to be inactive? I guess I was expecting it to take several months but if that's not the case it's good to know and I'll let my Dr. know too. I have another appt in about 3 weeks. Should I wait until then to discuss it or is this something you would call about immediately?

[elephant]

I feel I can't answer that, that is why you need a Wegener's specialist. Sangye or the others can probably give you more info. My guess is that you should be feeling good with in two months since it was caught early....this is my guess. If your still having joint pain, tired and having nose problems it might mean you need to increase the cytoxan or be on a different drug.
I would talk to your doctors tomorrow about it. Just listen to your body, my thought is if your having nose bleeds it means the wegeners is not controlled. That is the first question my Wegeners specialist asks, " Nose bleeds and shortness of breath?" She asked about changes in my skin ( moles, weird skin lesions ...ect), swelling in my legs, joint pain, fatigue, facial pain, stuffiness in my sinus, hearing loss, ect....She is very good. I go to Cleveland clinic in Ohio. I am looking forward to it!

[JanW]

RPylican - since you've only been diagnosed a few weeks ago, I certainly wouldn't expect to go into remission (a tricky word anyway), so soon. I'm on 15 mg of mtx and my doc told me right upfront that I shouldn't expect any quick changes (particularly since I'm not on pred, which lowers inflammation quickly). The immunosuppressants, which should be the main driver in getting your WG under control, work over time. If your doc can't give you an exact time frame, that's to be expected. Everything with this disease is very variable. 3-6 months of ctx and then a step down to a less toxic drug (mtx, imuran, cellcept) is a very normal protocol as is the monthly to every six week visits for labs, and especially in your case, urine samples since you've had kidney involvement.

[katarzena]

Hi Rpylican
Our simptoms are quite similar, I have upper respiratory involvment, no lungs involvment nor kidney involvment (minimal.). But I must agree with what others have said, if you still have nose bleeds and slight joint pain maybe you're supposed to be on higher doses for a start?
Me too was put on 40mg for a month and then tapered down pretty fast. (Currently at 10mg).
I have no crustings or nose bleeds and no joint pain and I'm nowhere near remission although I feel perfectly fine. (I was diagnosed 3 months ago)
I wish you all the best in reaching remission as soon as possible

[Doug]

RPylican - I live about 4 hours by car from you (Alliance, NE), and, in fact, was treated at University Hospital in Denver in January 2004. The WG specialist in charge of my treatment was a Dr. West, head of the rheumatology department. I am alive more than seven years after onset, so regard my treatment in three different hospitals (local, regional in a town a hour away, then UCH-Denver) as acceptable. I wasn't expected to make it, and it wasn't until I had plasmapheresis in Denver that the tables turned in my favor. Take a look at this link for names of doctors and institutions that specialize in WG and its treatment:

Front Page | Vasculitis Foundation

[Sangye]

Welcome to the group, RPylican! It's great that they caught your Wegs so soon.

I'm wondering why they have you on such a low dose of ctx. The typical dose is 150mg. Also, being down to 20mg pred is unusual at this point. I will always agree that you need to see a Wegs specialist.