Printable View
During May, June and July I was having a flare. My Rheumy prescribed RXT infusions in August,nothing unusual here.
My September blood test my ANCA was 7 then in September and October it was negative, December I was back to 9. Has this happened to anyone else?
Hi There, I'm replying to this thread because of the title caught my eye. It's what I can really relate to. I'm 35, and a single mom of a ten year old. So my life feels like it's been on hold for the past two years. The only recognizable, life-altering symptom I have is the subglottic stenosis...like the subject heading, ANCA tests (2) have come back negative so far...I've been having allergy or cold-like symptoms for a while now...but no pus (or sinus issues beyond hay-fever like severity). I've attributed this to dust allergies as I have been tested for environments things and dust/pollen were culprits in the results.
In November, the narrowing was so bad that I had to get dilatation just to be able to function (I was at 40% air capacity). No running, walking fast, moving fast...I had the procedure done in December and felt great for a little over a month (some of which was heavily medicated due to post-procedure). Presently, the narrowing is returning.
I guess I'm just looking to see if anyone else has had these "limited" symptoms of Wegener's? I have yet to be diagnosed for this, and have been referred to a Rheumatologist to either confirm or rule it out... Also, is anyone else struggling with depression due to life being altered (and feeling trapped in their own bodies)?
Yes, these are common things mentioned here by many users. You are not alone!!!Quote:
Originally Posted by BrilliantLight
Welcome
Hi brilliantlight, welcome! I also am considered having limited wegs and have a neg anca. My ears are my problem. What I understand is that I am being treated to slow down the potential progress of the disease and prevent further damage to what is bring effected at the moment. Depression played a part in the picture for me especially first year after diagnosis. I tried an antidepressant for a while, but have since stopped.
Hi brilliantlight and welcome to the forum.
As drz says, your symptoms and the way you feel is very common and if you put a keyword in the search engine bar, you will find a lot of similar stories.
Also if you go to the New Members threads, you will see that you are not alone.
It might be an idea to introduce yourself in the new member thread and then others can come alone and offer some advice.
BrilliantLight, perhaps, you should find a laryngologist?
Here is a good video explaining treatments for subglottic stenosis
http://www.wegeners-granulomatosis.c...-stenosis.html
Thanks jvilner. How did you deal with the depression symptoms? Did they lesson once you found yourself on the road to regaining control?
Thanks mishb. I am just getting the hang of navigating this site...feeling a tad overwhelmed by all of this. Really appreciate all of the replies. Will definitely go to the new members area and start off there.
:hug3:
Brilliant-- One thing to keep in mind, you can have ongoing Tracheal Stenosis & your wegs is in remission at the same time. As far as depression goes--boy do we have reasons to be depressed! I think a lot of us have it. If its affecting your daily life I would consider a talk with your doctors.
As far as the up & down Anka--I think that happens a lot too. By itself, with no other symptoms, I'm pretty sure your doc will just watch how you are doing. Hope this helps!!
Question as I am very confused now. Been told that I need dilation on esophagus. Barium swallow shows web/ring. I've had swallowing problems for years. No airway problems. Was dxed with WG only years later when had ear problems. Don't know 100% if swallowing is part of WG problem but am being treated accordingly. My question is 1. Anyone had dilation on esophagus not trachea and 2. Should a gastroenterologist or Ent do the procedure? Help!!
I would look for who ever has the most experience doing the procedure.Quote:
Originally Posted by jvilner
Hello all,
I'm writing this because I'm at my wit's end. Up till last night, I was going through psychological torture. I had a dilation done in December, am still undiagnosed, have a trip planned (for the 20th), out of country to somewhere warm and away from work (I'm a workaholic...). All test results are negative, biopsy of affected area was negative. It it safe to go abroad in this state?
Two weeks after being off postoperative prednisone (mid-Jan), the narrowing was back at 20%. As mentioned in another thread, I have a rheumy appointment scheduled for the 11th of March...but waiting has been like torture. I reached out to my surgeon's office in a panic about a week ago, because the narrowing was becoming VERY acute again. He had me come in, and upon confirmation of the narrowing's progression, was prescribed a newer, higher dose of prednisone...it makes me feel like crap, and is affecting all aspects of my life. LIFE SUCKS, but I keep telling myself it could be worse.
What I'm wondering - does the prednisone have any effect, as a steroid, on scarring tissue that may exist? What exactly is it doing, physically to that narrowing?
And what sorts of tests are done at the rheumatologist appointment (hoping to get specifics)....AND, how long will they make me wait for any sort of test results for a pinned diagnosis? I'm hoping that they look at one of a broad range of diagnoses before identifying the most logical based on symptoms (which I have very little of). I smiled when I read that article about how the diagnosis for that doggy was established after "...diagnosis investigations for infectious, neoplastic, or other inflammatory conditions all provided negative results." Sounds like this dog had a great doc. To humour myself, I idly considered going to my cats' vet about my symptoms.
Which brings me to my other question: does anyone know how thoroughly it has been explored that latent pathogens could cause these symptoms they attribute to Wegener's? The immune system attacking places that it finds these sneaky, elusive pathogens....? Is there anything I can read about how this has been explored? I can't seem to find anything conclusive.
Hi Brillantlight, I think we all understand how frustrating this is for you and how scared you must be at this point.
It is a good thing you have been prescribed a higher dose of Prednisone. Prednisone does do crazy things to your emotions but it can put the brakes on symptoms until a proper diagnosis is found.
To be diagnosis I had a lung biopsy, urine and blood test. But a lot was based on my symptoms.
I know it's easy for me to say but hold on you are nearly there and in a little over a week you might finally have some answers.
Keep your chin up.
Thanks for the reply. Appreciate the support.Quote:
Originally Posted by Swb21188
Some people travel with Wegs and do OK. A number on here have had long trips. Going to a remote area with poor access to emergency care is probably not a good idea though if your condition is not thought stable. If you do travel away from your treatment team, getting good travel insurance that covers emergency evacuation would seem essential to me to enjoy the trip with some peace of mind since stress caused by anxiety is bad for Wegs and our health too.
Yes, I have done it a couple of times. Twice to the USA and once to Fiji. I am just about to take another trip to USA.Quote:
Originally Posted by drz
If you plan everything right and have all your meds with you and any meds for unforseen problems ie. colds, gastro etc, then there is no reason why you can't travel.
I think deep down, I keep choosing USA because I know that they have some great medical care for WG, if I every did need it.
However, last time I went (2012) my Rheumy wrote out a plan of meds that I could increase and by how much, if I found myself in trouble. Just enough, so that I could get back home if required.
Also, as drz said, a good travel insurance is essential.
I presume that you have already travelled by now, and I hope it was uneventful in the Wegs variety, but awesome on the holiday scale