Cannot figure out what to do next

[sectech1]

Sorry to be so long getting back to you! I was diagnosed in late August after a 15 day hospital stay. I had a broncoscopy, which didn't show anything, and finally an open lung biopsy, and this is what showed the WG. My lungs had nodules 2-4?) and a mass of inflammation and fluid in one lung. My symptoms were a fever, chest pain like pleurisy, and a cough. Before my hospital stay they kept giving me antibiotics but my fever kept coming back because the meds weren't helping my lungs. And finally on a Sunday I felt like I couldn't breathe and went to the ER. My blood count had dropped so low (6.9) that they had to give me 2 blood transfusions (I thought I had lung cancer until the results came back, thank god for that!). I'm trying to answer all your questions. I started having ear trouble in March 2013 and finally found out about the WG in late August. I had 3 large prednisone infusions in 3 days, then went on 50mg daily. Shortly after that I had 4 rituxen infusions, 1 each week for 4 weeks, then 1 rituxen every 2 months, for a total of 6 as of now. I did have a fever again over 2 weeks ago that went away on its own without additional treatment, but blood work revealed that my ANCA # was back up slightly, so I may have to get another infusion in 2 months. From what my docs have told me my treatment has been pretty standard? I really like my docs and think they care about me. I have a pulmonologist and an oncologist but no rheumatologist as of yet. I hope you can get some answers soon. I hope they are watching your kidneys, according to my doc WG can destroy your kidneys if not treated! I feel mostly good right now. I have seen an ENT who said my nose and ears look good right now and no followup until I have other issues. The treatment that I've received has definitely helped my ears, just hope they stay this way. Let me know how everything goes, I'm here if I can do anything.

[Juliesjewels]

I want to thank everyone who's commented in this thread. I've suffered from symptoms of vasculitis for almost 3 years. Weird but mine started in GI tract. Last summer nose started getting stuffy, next was crusting like crazy, so much crust that the crust actually closed the passageway for air. Over 6 months time my septum completely disintegrated!! Gone!! A huge hole where I used to have a septum. Went to ENT surgeon who immediately biopsied nose & ran labs. I was neg ANCA & neg nasal biopsy. This surgeon operated on February 11 & completely closed the massive hole with cartilage from my ear. Few days later I started having horrible joint pain. I could barely walk. Weakness in legs. Terrible muscle pain, extreme fatigue ... Went to rheumy who put me on prednisone. Felt much better but eight weeks after surgery a new hole in my new septum started. Back to ENT surgeon & he says yes you've got wegeners after he say my most recent labs (sed rate 28, high C-reactive protein, high serum creatine, several other abnormal findings). He took a second biopsy of nose.....three weeks later that biopsy is negative too and second ANCA test is negative. Now I've been on prednisone for 6 months throughout all go the high inflammatory lab work & on prednisone for biopsies. Back to rheumy yesterday and guess what....she says "legally" she can't prescribe steroid sparing drugs without a positive biopsy so she's weaning me off prednisone to see if something else crops up that she can biopsy!!!!

Well this thread inspired me to write a letter to her asking for her to refer me to Johns Hopkins!

I've had two episodes of a necrotic nasal septum, vision problems, terrible joint & muscle pain, stiffness upon getting up from a seated position, mouth & tongue ulcers which come & go periodically, profuse sweating (both night sweating & sweating along with exertion), various elevated inflammatory blood markers, extreme fatigue, shortness of breath with basic movements, and most importantly a poor quality of life because I'm not able to actively participate with my family. But she won't treat me for Wegeners. If I don't have wegeners, what the heck do I have?

Thank you for listening & for giving me the courage to ask for a referral.



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[drz]

This is why experts are so important. They can usually start treatment without needing a biopsy to confirm the problem. Some times providing the appropriate treatment and watching to see if helps the symptoms can be another way to help determine diagnosis of what is causing the symptoms.

[annekat]

This is why experts are so important. They can usually start treatment without needing a biopsy to confirm the problem. Some times providing the appropriate treatment and watching to see if helps the symptoms can be another way to help determine diagnosis of what is causing the symptoms.

This is so true. There is a recent post where someone's doc said they cannot "legally" prescribe Wegs drugs without having a definite positive biopsy. That sounds like such a load of bunk. I know there have been several on here who have gotten treatment without a biopsy, after being evaluated by experts.

[drz]

It might be quicker and easier to self refer to a clinic with experts and have them request the info from your current doctors. I know Mayo will assist one in setting up an initial appointment and assume the other Weg Expert Clinics also have similar staff to assist a new patient.

[VictoriaBrady]

Hey MikeG-2012 I too have lost my sinuses to WG. I see Dr. Villa Forte, Sindwani ENT and Fritz (plastic surgeon) along with Perry (Cole eye clinic) all at Cleveland Clinic. My diag took years, I was a runner so they assumed it was allergies but after monthly infections and lots of antibiotics a local ENT did biopsy, but didn't have the experience to treat WG. Saw local remuie who over drugged me. Clinic saved my life and face. I am new to this forum and need help getting disability.

[Jaha]

I also see Dr. Villa-Forte and a pulmy Dr. Choi. I may need to see a ENT up there as I am starting to have trouble with my throat Welcome to the forum, sounds like you have been thru a lot.

[BookNut]

Hi Pete,
I didn't even ask him what he meant by that comment. It was obviously for intimidation purposes and I didn't appreciate it at all so I just let it go.
I'll DEFINITELY call Villa Forte again tomorrow.
Thanks

I have also been having a terrible time with Cleveland Clinic returning my calls. I have given the details in a post under the general WG chat forum. I should have put it here. My whole experience has been a nightmare of bureaucratic incompetence. I will be interested to find out if you are successful in getting someone to get back to you. No one in my doctor's office has ever returned a single one of my calls. i am wondering if the patient service has deteriorated recently. I had always heard such good things, and have been shocked by my treatment.

I sure hope you get a difinitive answer soon, as well as doctors with some empathy!!

[BookNut]

how have things gone with Dr. Choi? The doctor I am trying to work with is Dr. Daniel Culver. i would be interested in your experiences with Dr. Choi. I have invested 8weeks trying to get help from Dr. Culver's office and really am out of time. Bit maybe next summer.....