New to group.

[zizzcat]

Hi! My name is Hope. In 2010 I was diagnosed with Diffuse Undifferentiated Connective Tissue Disease. Am ANA and ANCA negative but something has caused a great deal of pain, atrophy and scarring to major organs. Relief and improvement of kidney function came with increasing the dose of Imuran higher and higher. These days I am having episodes of my throat closing up on me with coughing fits which can be relieved (for now) with Halls' Menthol Lyptus, if I have one or two or three in my mouth constantly. My nasal septum was eaten years ago but now there are scabby lesions making their way to the bridge of the nose. I am having to please this and that specialist to generate documentation for the rheumatologist to treat this disease a little more aggressively, but am really tired of this and very frustrated.

i look forward to reading everyone's posts.

Hope

[Dirty Don]

Welcome to the forum Hope! Entry credentials are rarified and so is this wonderful group! Have you been dx definite WG? I understand the similarities between DUCT and WG, just wondering. Though I don't have the closed throat, I do have a dry one and persistent cough...like you I live on Ricola drops...sheesh. I hope you have experienced WG docs as others tend to read from books and you will, in no time, be far ahead of them. Best to you, keep asking questions, and be tougher than you know!

[mishb]

Hi Hope,

What a horrible thing you have, I actually haven't heard of that one (DUCT), but it seems to have a lot of characteristics of WG.

I have ANA and ANCA positive results and therefore have a diagnosis of WG and Mixed Connective Tissue Disease.

I don't have the cough but can relate with the nose stuff.

I hope the rheumatologist can sort things out quickly.

[zizzcat]

DUCT is just a generalized term for a non specific immune disorder. It's usually not taken too seriously. Mine eventually was because scar tissue and atrophy began to spread to some major organs and increasing the immune suppressant seemed like the only wise alternative. They are treating it as they would treat lupus, but it may be stronger than lupus because the illness keeps gaining on the med dose. My ENT says that only Wegner's can do to this to my nose, and possibly the throat along with some spinal problems in the neck. She has written a letter to my rhem docs about this, suggesting that they consider treating me as though it were Wegner's. I need some back-up documentation from the pulmonologist and the neurologist and possibly a laryngoscopy before approaching the rheumatologist's with this. My appt. is June 10.

Hope

[annekat]

Welcome, Hope. Your septum being eaten away sure sounds like Wegeners. I hope you can get some more aggressive attention, maybe look up one of the specialists on the Vasculitis Foundation site and at least try to get one of your docs to consult with one of them. I had a very low ANCA reading and some with WG have negative readings. With your severe nasal symptoms, I'd think a septum biopsy would be in order. The coughing demands some attention, too. Some of us cough a lot just from stuff dripping from the sinuses and collecting in our bronchial tubes, and we just put up with it. But there can be more serious causes of coughing, such as tracheal or bronchial stenosis. There are people on here with those things and posts on them in the archives.

[Alysia]

Hi Hope,
welcome to the forum. I dont know anything about your diagnosis but: when I got my RTX IV there were 2 others ladies there, not weggies, who also got RTX, one with lupus and the other with some kind of arthritis. they both told me it helps them bery much. I know it is being used for a lot of AI diseases.
maybe you sould ask to get it from your docs ? and if there is money problem maybe the med company will help ? one of the ladies I met was in a kind of research about RTX, she paid nothing.
I think you should insist on getting the best treatment availble. and this is the one. at least this is my opinion.
dont give up hope to find the right treatment.
good luck !

[zizzcat]

Hi, I do have stenoses of the trachea. Because there is coincidentally some severe degeneration to the vertebrae in that area my ENT is hesitant to say that it is solely a problem that appears to be Wegner's. I have no pain in that area, but do have spasms. I have spasms everywhere but Baclofen ( a muscle relaxant for the arteries) and the Imuran help that a lot.

Is RTX an infusion treatment? What exactly is it? I have Medicaid, and payment would not be a problem.

The problem is jumping through the medical hoops back and forth to get the specialists to evaluate what may or may not be Wegner's and doing it before the stenoses gets worse.

thanks for your input and concern

[zizzcat]

Oh, I must not have explained this well. My septum is already gone. It got eaten sometime between 2004-2005. While it was happening, I would tell doctors but it didn't get their attention. Finally, the first dr. that noticed it said "ah, I see you've been doing some cocaine lately, hmm?"

the scabby nasal mush appeared a month ago and is going for the bridge of the nose. I'm surprised that I can have these nose and throat symptoms while taking 175 mgs. of Imuran a day. At least the last increase seems to have resolved what may have been abdominal (mesenteric) vasculitis, which due to hernias, caused obstructions and a PAIN (!!!).

[Alysia]

Is RTX an infusion treatment? What exactly is it?


RTX is an infusion treatment. you get it in hospital. about 6-7 hours.
there is a lot of writing about it here in the forum. some important discussions.
search: rituxan or rituximab. another name of it: mabthera. under medications.
I got it less then 2 months ago and there is continous, although slowly, improvement.
what you describe about your nose - I had similar "products" and it is getting less and less.

[annekat]

Finally, the first dr. that noticed it said "ah, I see you've been doing some cocaine lately, hmm?"
Ha... I'm not sure when my saddle nose appeared, as my glasses disguise it well, but I noticed it just before dx. My doc had sent me into the hospital overnight for tests because something didn't look right on my chest xray. As a prelude to explaining his concerns, he asked me if I'd ever used intravenous drugs, stuff like that, and thought I could have endocarditis, I think an inflammation of the lining of the heart, which apparently IV drug users sometimes get. I have to wonder if he saw my saddle nose (which I hadn't yet seen) and jumped to conclusion that I was a hard core drug user. Just speculation, of course, and the answer was no to the IV drugs. No mention of WG by anyone until after my hospital tests which included a lung CT scan and showed many cavitary lesions. Still, this particular doc doubted I had WG until I pointed out my newly discovered saddle nose (which if he'd seen before, he'd chalked up to me being a cocaine user, I'd guess), and told him I'd gotten a septum biopsy while he was on vacation, which ended up showing I have WG. Oh, who knows.... I just figure with all my sinus and ear involvement prior to the lung involvement, someone should have thought of Wegs a lot earlier, and I could have avoided being pegged for a low-life drug user. Another weird thing: no one in the hospital noticed my saddle nose, or commented on it if they did... but I discovered it right after returning home.