I see an ocular inflammation specialist at the recommendation of my rheumatologist. What I thought was ever changing vision issues, he explained is the inflammation in and around my eyes exerting...
Type: Posts; User: makabe
I see an ocular inflammation specialist at the recommendation of my rheumatologist. What I thought was ever changing vision issues, he explained is the inflammation in and around my eyes exerting...
THANK YOU so much for all of that info. Hugely helpful. I realllllly appreciate it. The doc called today and said the ankle swelling is most likely due to prednisone (timing corresponds well) and...
Thanks, Pete.
That is good to know. My creatnine looks good, right in the middle of "normal" range. That makes me feel better... I will wait patiently to talk to the doctor. :-)
Hi, everyone,
It has been a while since I have posted. Since diagnosis in Nov. 2011, I have mainly had sinus/breathing/joint issues, but not kidney problems. That said, I have major kidney stone...
I am so incredibly sorry to hear this news. Alysia, he was blessed to have known your love. I wish you peace and comfort right now as you mourn his incredible loss. Please take care of yourself as...
I was 38 when I was officially diagnosed and in a unique work position. My job was grant funded and was only set to last about 18 months after diagnosis. With that information and knowing how tired I...
I was at the Vasculitis Symposium last year and remember hearing about "less severe" cases (like mine) seeming to flare more frequently, and with shorter remissions.
That is exactly what I keep telling myself... Diabetics -- kids, even -- do it every day. I am sure I will be fine, but this may prove to be the largest psychological hurdle I've had yet. Sad, but...
I've been on oral MTX (25 mg.) for 2.5 years now. My symptoms started flaring, so I was put back on pred and am now switching to injectible MTX, which I am frankly scared of. I know I am just being a...
I have been away from this forum for a while and have just gotten caught up on all that you have been through, Phil. I will keep you in prayer. Your last comment from today gave me a chuckle: yes,...
You took amazing notes, Rebekah! I wish I'd met up with you while we were there! It was a great symposium.
I saw the question about developing kidney involvement over time if you didn't have it...
I am going to the Philly event. Luckily I live nearby... It would be great to meet others who are going!
Thanks, everyone (And sorry, Bob! I think I accidentally replied just to you...)
I had a suspicion this is a flare, but having only been on meds for WG for a few months, I wasn't sure what to...
I see one of my rheumatologists next week (will see Dr. Merkel at UPenn April 3) but am curious about a new flurry of symptoms I am having. I've been on MTX and prednisone (tapered down to just 5mg...
I finally got to have my appointment with Dr. Merkel at UPenn (formerly of BMC) today. Not surprisingly, he made my WG diagnosis official. The good news is that he thinks mine was a case caught...
It's been a while since I updated, but after tapering my pred, all of my "original" WG symptoms started to come back, including daily fevers. My rheumatologist decided to go ahead and start...
I've been taking oral MTX. I went up to 20 mg. this week. Three doses/weeks so far, and it hasn't been too terrible. I'm super tired the night I take it (in the afternoon) and most of the next day,...
Well, the first round wasn't too bad!! No nausea, which was my biggest fear. With POTS, any vomiting at all dehydrates me so quickly that I always land in the ER for fluids. I was pretty tired the...
I haven't posted in a while, but thought I'd check back in as I start MTX today.
It seems to be the consensus that I am weird, even for a WG patient. I'm at a point where most doctors agree I have...
This is all so helpful!! Thank you for taking the time for such thoughtful replies.
When I first developed a fever a few years ago, they looked all over for malignancy. They thought Hodgkin's at...
Every doctor alludes to the fact that they need to make a diagnosis because it's not safe to let Wegs go, but I appear "too healthy." The other perplexing thing is that I had a seemingly similar...
I was probably too hasty when I said "they don't see a lot of Wegs." I sought out doctors who do see Wegs patients regularly while I wait to hear about Hopkins taking my case. My doctor was supposed...
Oh, my goodness, Chris, your first sentence is almost WORD FOR WORD what my main doctor has said. Everyone agrees is almost can't be anything else. But, because they don't see a lot of Wegs, they...
Unfortunately, I seem to be stuck in the diagnosis process. I know this is a hard disease to pin down and was wondering what else your physicians considered before deciding Wegener's was the culprit...
I'm still at that fun stage of early diagnosis... In short review, I've had symptoms for about 19 months including near daily fever, roving joint pain, eye pain/blurred vision, MAJOR sinus issues....