ArlaMo
05-13-2010, 01:27 AM
Morning everyone! I'm Michelle, aka ArlaMo on the internet, and I was recently diagnosed with Wegener's (April 2010) and spent several hours yesterday reading through lots of great information here.
My journey started back in October of last year - got a cold that just wouldn't quit. Before that cold, I was one who never got sick, never went to the doctor my entire life. After a few weeks with no improvement, we tried antibiotics, looked at me having some adult-onset allergies and tried meds for that, tried more antibiotics. Then, I developed the earaches from h-e-double toothpicks (while on the antibiotics) and we got an ENT involved. He's awesome, but was trying to treat the symptoms. Lost my hearing almost completely, ended up with tubes in both ears. Had sinus x-rays, head CT, lung CT (all negative.) Still had the cold, developed a never-ending cough and then Bells-Palsy on the left side of my face. Tried high powered antibiotics, including some injections and we thought we saw some improvement, but then the joint pain started. Could hardly move or walk - got cortisone injections in the major joints which actually helped a lot with the pain.
All along, my sweet husband knew something more was going on but nobody could figure it out. Then, one morning I woke up and had all these weird red lines under my fingernails - splinter hemorrhages. This finally clicked with my husband (he's an ortho) and he remembered these being related to carditis or ??. Talked to a new doctor (internal med) and he immediately knew it was Wegener's after hearing my history. Did the blood work and confirmed it the next day.
We live in a pretty small town, so no rheumatologist anywhere close by - I drive 3 1/2 hours to Arthritis Northwest in Spokane to see a doc up there, right now once a month. Getting labs every two weeks and trying to get into the nephrologist here in town (booked out til August) because I have kidney involvement.
I'm on 200mg cytoxin (upped from 150 because my creatinine spiked) and 60mg pred. Bactrim 3x week, plus the fosomax once a week. I'm about 6 weeks into the treatment. The joint paint is much less, though my left foot is numb on the bottom - actually it feels more like I sat on it for a couple days and is all pins and needles. Most of my hearing has returned, but the audiologist thinks there is some permanent nerve damage and it is definitely not what it used to be. Bells Palsy resolved, the cough has almost gone away, and the nasal congestion is much better, though I get the gross crusties that need to be cleared out almost every morning.
As for me, I'm a SAHM to 6 great kids. My oldest will be a senior next year and my youngest is 3. It has been pretty rough on them. My husband is an ortho - we just finished our 17 year journey through masters, med school, internship, residency, fellowship last year. Thank goodness this didn't start til we were through with all that!
I love music, singing and got a cello for Christmas - unfortunately, the whole ear thing seems to have ruined what used to be close to perfect pitch and I sound like a frog :o when I try to sing now. My other love is photography, which has also been affected by this darn disease...or at least the meds I'm taking. From reading, it looks like my shaky hands are due to prednisone side effects?? Hard to take good photos now and I really miss it!
Anyway, trying to keep my (double...triple) chin up (oh yeah, got the moon face already) and just looking for more info and support on this journey.
My journey started back in October of last year - got a cold that just wouldn't quit. Before that cold, I was one who never got sick, never went to the doctor my entire life. After a few weeks with no improvement, we tried antibiotics, looked at me having some adult-onset allergies and tried meds for that, tried more antibiotics. Then, I developed the earaches from h-e-double toothpicks (while on the antibiotics) and we got an ENT involved. He's awesome, but was trying to treat the symptoms. Lost my hearing almost completely, ended up with tubes in both ears. Had sinus x-rays, head CT, lung CT (all negative.) Still had the cold, developed a never-ending cough and then Bells-Palsy on the left side of my face. Tried high powered antibiotics, including some injections and we thought we saw some improvement, but then the joint pain started. Could hardly move or walk - got cortisone injections in the major joints which actually helped a lot with the pain.
All along, my sweet husband knew something more was going on but nobody could figure it out. Then, one morning I woke up and had all these weird red lines under my fingernails - splinter hemorrhages. This finally clicked with my husband (he's an ortho) and he remembered these being related to carditis or ??. Talked to a new doctor (internal med) and he immediately knew it was Wegener's after hearing my history. Did the blood work and confirmed it the next day.
We live in a pretty small town, so no rheumatologist anywhere close by - I drive 3 1/2 hours to Arthritis Northwest in Spokane to see a doc up there, right now once a month. Getting labs every two weeks and trying to get into the nephrologist here in town (booked out til August) because I have kidney involvement.
I'm on 200mg cytoxin (upped from 150 because my creatinine spiked) and 60mg pred. Bactrim 3x week, plus the fosomax once a week. I'm about 6 weeks into the treatment. The joint paint is much less, though my left foot is numb on the bottom - actually it feels more like I sat on it for a couple days and is all pins and needles. Most of my hearing has returned, but the audiologist thinks there is some permanent nerve damage and it is definitely not what it used to be. Bells Palsy resolved, the cough has almost gone away, and the nasal congestion is much better, though I get the gross crusties that need to be cleared out almost every morning.
As for me, I'm a SAHM to 6 great kids. My oldest will be a senior next year and my youngest is 3. It has been pretty rough on them. My husband is an ortho - we just finished our 17 year journey through masters, med school, internship, residency, fellowship last year. Thank goodness this didn't start til we were through with all that!
I love music, singing and got a cello for Christmas - unfortunately, the whole ear thing seems to have ruined what used to be close to perfect pitch and I sound like a frog :o when I try to sing now. My other love is photography, which has also been affected by this darn disease...or at least the meds I'm taking. From reading, it looks like my shaky hands are due to prednisone side effects?? Hard to take good photos now and I really miss it!
Anyway, trying to keep my (double...triple) chin up (oh yeah, got the moon face already) and just looking for more info and support on this journey.