Coping in AZ

[janNaz]

Hi everyone. First of all, thank you all for sharing your stories and creating this wonderful support forum. It definitely helps in that I no longer feel I am alone in this. Earlier today I introduced myself, however, evidently my posting was unsuccessful as I didn't see it anywhere...technical difficulties..on my part - haha! It was quite lengthy so I was disappointed that it got lost to who knows where, so I will try again!

My story. I was diagnosed on March 9, 2010, with WG. My symptoms, which started with my right ear, began around Christmas of 2009. There was stuffiness and ringing in the ear, but I played it off as a head cold since I had been training for a 1/2 marathon (ran it mid-Jan) which involved running and cross training in the cold, early morning hours 6-7 days a week. I visited the doctor a couple of times only to be told it was probably sinuitis and, then later, an ear infection, both times to be sent home with antibiotics. Soon hearing decreased in right ear, then same symptoms appeared in left ear as well by end of Jan. CT scan showed substantial fluid/air build up in middle ear, and ENT specialist placed tubes in both ear drums and started me on steriods. Early to mid Feb I had several bouts with vertigo, but I managed to run a 10K which happened to be on day that the vertigo had subsided. Hearing in left ear deteriorated more by this time, so met with ENT doc and audiologist and confirmed total loss. Right ear only was fitted with hearing aid also. About 2 weeks after the 10K is when everything went downhill: hearing in right ear had decreased to the point where I could barely hear (even with the hearing aid) severe joint pain in fingers, knees and toes, bottoms of feet extremely painful, imbalance due to ears, night chills, some nose pain. Eventually I ended up in hospital, where docs were at total loss at cause of problems, and were going to transfer me to Scottsdale Mayo, but Rheumy doc had a hunch and did research, ordered lab work, and voila....WG diagnosis! Treatment of cytoxan and prednisone began accordingly.

I am currently on 175mg cytoxan and 25mg pred, along with certain vitamins. I was on Bactrim as well, but taken off as it caused my wbc to drop severely. I'm doing ok, still wake up with some joint stiffness (not pain), which subsides by afternoon, have slight post nasal drip, feel tired/sleepy on some days, and still have the dang imbalance problem, so I'm unsure if pred dosage is enough? I have appt Rheumy nxt Tue and will address then. Do any of you have the imbalance problem? ENT doc says it's due to damage to inner ear or nerve in left ear, and once healed imbalance should subside, but it's taking so long that I don't know what to believe. I have only to hope that hearing will be restored, at least partially, in left ear. Despite the imbalance, I manage to do some walking and running on a regular basis, but rest in between days or on days I feel tired. I'm trying hard to manage some control of weight gain, but definitely can't say the same for the hair loss, bluish-black fingernails, and some puffiness in face.

At first I had no idea of the seriousness of this disease and its devastating effects on the body and have been in denial, I guess, until just recently. I've now come to accept it and I am working on dealing and living with it. My husband, who has been wonderfully supportive, and I will be attending the SF Symposium to learn more and perhaps find a WG specialist or "guru" to consult with, who could then consult with my current Rheumy about meds and progress. Unfortunately for me, it seems that all of the experts are located on the east coast. Anyone know of an expert in AZ by chance? There is a vasculitis specialist, Dr. Chang, in SF that would be closest, but I don't know if she specializes in WG.

Thank you again for "listening", and I am extremely grateful for this website. I've already learned so much from reading the posts. I wish you all the best and please know that you're in my prayers.

[Hammy8241]

Hi janNaz, welcome to the forum.

As a runner I can share in your frustrations past, current and those you will have in the future. One month I could run a half reasonably well ( although by this time I was having symptoms) 3 weeks later I could not run a mile!

I also fought the WG and carried on running and with the pred did manage a bit, but I found I was very tired the next day and had to rest. As I have had pointed out, the pred also makes you susceptible to injury so I would advise caution against running hard. I have stopped running altogether for the past month or so and desperately miss it. So, in agreement with my Dr, I am about to start again gently (Tredmill). Weight increase is a problem for me so I hope the exercise will help a bit too. Other exercises just don’t seem to have the same effect on me.

The medical bits I leave to those who are better placed to comment although I understand that the chemo drug does take 3-4 months to fully kick in fully.

Thiis site does have loads of info and a wonderful diverse membership with common experiences to share so don't be backwards in coming forwards with your questions.

[Sangye]

Hi Jan, welcome to the group! It's great that you got diagnosed very quickly. I lived in Flagstaff when I was dx'ed in 2006, so I can help you figure out what to do about AZ care. LightWarrior is in her initial treatment and lives in Tucson. She's working on getting better care for herself, too.

Hands down, the most important factor in how you fare with Wegs is to have a doc who specializes in Wegs overseeing your care. That's a rheumatologist who sees hundreds of Weggies and does research, not just a regular rheumy. No other specialist should oversee your care (eg, ENT). They must be part of the team, but only the Wegs rheumy will know how to put all the pieces together and coordinate the others on the team.

Even though you're far from the major centers, the best scenario is to travel to one for a proper evaluation and to become established as a patient. You don't have to go frequently-- maybe quarterly at the most-- and can have ongoing tests and care arranged locally, but this option allows you direct contact with the Wegs doc whenever you need. When you come, it's good to see their other specialists who see a lot of Wegs. In your case it would be important to have a Wegs ENT evaluate your ear condition and make recommendations.

The other option is to have a VF doc consult with your local doc on an ongoing basis. This is better than nothing, but far from the best. You never have contact with the Wegs doc and really miss out on a lot of info. And if your local doc isn't completely open to taking orders without putting his/her own spin on it, it will negatively impact your care. Plus, the Wegs docs gain a lot of info just by looking at you. Even other JHU rheumys missed what my Wegs rheumy saw instantly.

Regarding AZ care: I was treated at Mayo Scottsdale for about a year, after having horrible local care in Flagstaff. I didn't know anything about Wegs specialists, had no info from other Weggies, etc.... The rheumy who sees Weggies there (Dr Mehrdad Mazlumzadeh) is not a Wegs specialist. He only evaluates Weggies. (They don't treat Weggies on an ongoing basis, I had to beg him to do it since I had no other options) He was very kind and was worlds better than my local schmoo. But far from adequate care. At every visit he threatened to stop treating me if I didn't go back on massive steroids, which I definitely didn't need. I had no idea how lost he was until I moved to MD and started at JHU.

Last thing: You said, "About 2 weeks after the 10K is when everything went downhill." That's how Wegs plays and it's important to connect the dots early on. It's a serious disease that requires proper rest. Add in the drugs (chemo and pred take an enormous toll on the body) and your body is not going to tolerate its prior level of activity for the time being. It's like whipping a tired horse. I suggest keeping a daily log of your symptoms and general activity. It makes it very easy to see the trends, and to identify just how much you can exert yourself and continue to heal. It's the hardest thing to hear, believe me.

[Jack]

The problem is that the Pred will make you feel strong, but it is a false impression. You have to learn to pace your activity and be kind to your body. It is taking one hell of a pounding and will bite you back with more Wegener's flare ups if you don't look after it.

[janNaz]

Thank you Hammy8421, Sangye & Jack for your replies.

Hammy8421: Definitely miss the hard and long runs!! Isn't it amazing how much time and hard work it takes to strengthen the body and build endurance, yet how easily in such a short amt of time it takes the body to go to *&% once training has stopped?!! I'm being careful not to push myself (although it's so tempting). I know I can't run like before because I do tire easily, and not to mention the funny sight of seeing someone looking like a drunken sailor running down the street. As you have experienced, I too noticed how tired I was the day following a run day, tired to the point where I just wanted to sleep. My Rheumy gave me the green light to do some light running, but the other Rheumy I see in his absence said not to and recommended walking only. Who do I listen to?? Of course the Rheumy who says I can! I definitely have to be more careful tho and allow more rest days or else I'll be paying for it later. I just want to live somewhat normally so badly. Good for you that you can start on the treadmill. Keeping close tabs on the diet will help...avoiding salt, which is easy for me because I'm not a salt person, and sugars, which is NOT easy because I do love the muffins and cakes, makes a difference.

Sangye: Yes, my docs are pretty positive that the disease was caught in the early stages and aggressive treatment started quickly, but it still scares me. Scares me that they're not knowledgeable enough about it and how easily things could turn around in the wrong direction, especially when it comes to the appropriate ways to administer/taper prednisone (based on what I've read anyway). Finding a Wegs specialist is our (husband and I) next goal. Hubby says he doesn't care how long or far we have to travel to see one. I always wanted to travel, but definitely not in this way I must do everything I can to get the best care possible, because afterall I'm only 43 and have two beautiful little girls (2 and 6 years old) who encourage me daily that I need to be around for. Did you move to MD specifically for care at JHU? I met a friend last week for lunch, told her about WG and how WG specialists are on the east coast, and she said, "Heck, if I were you I'd be packing my bags and moving to the east coast then!" She made me laugh, so when you mentioned you moved to MD I had to smile. Is Dr. Seo your doc?

As for my ear, I didn't know that there were actual Wegs ENT. I will have to find one. My list is getting longer and longer. I know that there are studies out there that I am interested in participating in. Perhaps this could be one way to consult with a Wegs specialist? There is still so much to learn. Right now I'm still trying to remember what all the disease marker counts are that the docs look for and what those numbers mean. I will also maintain a journal of some sort to keep things on track.

Jack: I think I'm starting to understand the "false impression" that prednisone gives. I must be very careful because it doesn't play fair. I certainly don't want any WG flare ups like the one I had when my wbc was severely low and I had to stop the cytoxan and bactrim, which led to the increase in pred.

[Lightwarrior]

Sadly there are no great resources in Arizona. I live in Yuma and have a local Rheumy who is too arrogant to get the free consultation with a Wegs specialist that the Vasculitis Foundation offers. I encourage you to take advantage of this service. If you live in the Phoenix area I think there is a support group that meets. I e-mailed them once and it took a long time to get a reply, I will look for that address for you. In the meantime the web address for the Vasculitis Foundation is www.vasculitisfoundation.org this site has a wealth of information.

[Hammy8241]

I lived in Flagstaff when I was dx'ed in 2006,

Stayed in the Motel 6 in Flagstaff a couple of years ago. Lasting memory was of the cute? train horn sounding every hour throughout the night..... Grrrrrrrrrrrr!

[janNaz]

Hi Lightwarrior. I was afraid of that I appreciate the info. I did get in contact with a local support group, led by a woman by the name of Carole (don't remember her last name right offhand). She's to add me to her mailing list to receive updates of meetings, news, etc. I think they meet in the fall. I look forward to receiving the info and hopefully meet with the group sometime this year.

My priority at this point is to consult with a Wegs specialist, who will then coordinate my treatment with my current Rheumy. I hope this won't be difficult.

Will you be attending the SF Symposium?

[Lightwarrior]

Will you be attending the SF Symposium?

Sadly, no...but I will be anxiously awaiting the knowledge all of you who are going gain.

[Sangye]

Did you move to MD specifically for care at JHU? I met a friend last week for lunch, told her about WG and how WG specialists are on the east coast, and she said, "Heck, if I were you I'd be packing my bags and moving to the east coast then!" She made me laugh, so when you mentioned you moved to MD I had to smile. Is Dr. Seo your doc?

I'm a Buddhist nun and our main temple happens to be here in Maryland, so that was my main reason for moving here when I did. I had no idea about Wegs specialists until I was preparing to move! I was trying to get specialists lined up in advance of arriving since the Wegs was still highly active. I found JHU via Google and got assigned to Dr Seo. He's amazing and has changed the whole game for me.

I love Flagstaff more than any place on earth, but not enough to die there. If you moved closer to a major center, it'd make your life even easier. But if you're willing and able to travel to one as needed and also to handpick local docs to support you, you'll probably do okay. My caveat is that Wegs often takes uncountable and surprising turns (sure has for me), and just last month if I hadn't been able to see Dr Seo in person I'd be in trouble.

As for my ear, I didn't know that there were actual Wegs ENT. I will have to find one.

Most are at the major centers, so it's one-stop shopping. They work directly with the Wegs rheumy and they all know each other well. When you arrange to see a Wegs rheumy, tell them you'd like to see the ENT(s) who see all their Weggies while you're there.