Need some advice- recent doctor visit- confused!!!

[deanna]

I saw my doctor recently for a follow up. I was diagnosed last winter with WG. I am on 75 mg of Imuran. It has decreased my titer, which is good. In talking to the doctor, she said other than my C-anca and proteinese- 3 I don't have much to indicate WG. However, before I was on the medication I had fever, night sweats( which I still have), weight loss( weight is still about 96 lbs), fatigue, hoarseness( still have), hearing loss( which has gotten worse) malaise,and virus' which would last for days and weeks. I have no lung involvement. Recently I did have an incident of a fever which set me back about a week. Lost my voice and my ear problems seemed to get worse. She asked if the medication( Imuran) has helped my ear,- no.
I asked her if it wasn't WG what would it be and she did not know. I am confused- Has this happened to anyone else? When I read about the symptoms I have had them all for at least 2 years. I would get a virus, fever, sweats and they and would last for weeks. The raspy voice started about the same time and it comes and goes but most of the time I have it. No one seemed to be able to figure out what was going on until the blood work last December. this seems to be a disease that is hard to diagnose and I have a very mild case according to the doctor. She also said that WG does not usually affect both ears. Is that right? The ear doctor is not sure what to do with my ear. He is chair of the Department so I am with the best. I was on steroids for my ear and it did not help. I find that this website is helpful so I hope someone can make shed some light on this. I left the doctor's office feeling like she was dismissing some of what I was saying.
I look good and for that I am thankful. Interesting about diseases, unless you look sick are you? My husband has Alzheimer's and he does not look like he has it but he really does.
Thanks in advance for any help.
D

[Lilly]

Hi Deanna, so sorry to hear about your problem....I am confused also, because this disease is so difficult to diagnose, that it was considered very rare when I was diagnosed in 1990. I had been having symptoms of ear infections and sinus infections, and eye problems for over a year before all the other symptoms attacked me and I went to the ER. I was a mess, and I had Doctors looking at me like I was something they had never seen before. Before treatment, they had to have 3 positive diagnosis pointers to actually say I had Wegeners...so I had a nose biopsy, a needle lung biopsy, and then positive blood work for 3 doctors to give the positive Wegeners Granulomatosis. But it sounds like you are not sure if you actually have it....Its so different with each person, but I wonder if you don't have lung involvment, do you have kidney involvement. Normally you have sinus, ears, throat, lung, and if no kidney involvement it is "limited wegeners" But otherwise pts have head, lungs and kidney involvement. I have had problems with BOTH ears, and eyes throughout....but so far no direct kidney involvement for 26yrs. I wish I could be of more help, but feel free to ask any questions. Blessings to you.....Lilly

[Alysia]

Hi Deana.
In my first year docs were not sure if it was wg because of 2 false negative nose biopsies. But I did a research then and found out that positive C-anca is only in wg & Crohn's disease. Cant be C-anca positive just like that. It is an indication.
Most of us dont look sick. Its part of the wg deal.
I suggest you to go to ENT to check why your voice sounds like that.
Imuran 75mg might be a bit low unless you are small and tiny. For medium size weggie they give 100mg.
Please update us.

[deanna]

Thanks for the reply, yes I am a small person and was on 100mg of Imuran and my LFt were elevated so the doctor decreased me to 75. I have been to the ENT and a voice therapist for my voice and not sure why I get a raspy voice- but it is sexy!

[deanna]

Hi Lily, yes I had ear infection, a tube placed and many nonspecific virus', tested once for mono due to swollen glands. This goes back for at least 2-3 years. The list goes on and on. 6 months ago prior to medication my titer was a higher so I am hoping that the Imuran has helped. My C-anca is still positive. I had a chest x-ray- negative, sinus x-ray- neg, she did do other labs and all normal. So I think my kidneys are ok. I do think it is limited to. When I think back to the last few years I wonder if it was there and thankfully was put on medication before the other areas became involved. I do have some eye irritation but nothing I can't live with however my right eye feels different and is very itchy. The entire right side of my head is very congested but no drainage. I have SOB and since the chest was negative she wants me to see my PCP. Will see how my other ear is in 2 weeks.
Will keep you posted
Deanna

[gilders]

Deanna, it sounds like you have Wegener's and it is simmering away, rather than a full out attack/flare.
Azathioprine is usually used for maintenance and that's what it seems to be doing - maintaining you at simmering level. I think you need to get in to remission with something stronger such as Rituximab first.
I'm sorry but I'd suspect you won't see improvement with current meds.

[Alysia]

Deana, if you still have shortness of breath but your lungs look ok, ask your docs to scope your trachea. It might also explain the voice. There is subforum here under the title of tracheal stenosis. Check it to see if there is any info that can help. Hang in there. The beginning is the toughest. I agree with gilders that you might need rtx. Sending prayers ♡

[Debbie C]

Hi Deanna, sorry to hear you are having continuous problems. Are your drs. wg experts,just because the one is the head of the dept. doesn't really mean anything. My mother had back surgery from the head of the dept. at Cleveland Clinic and she is to the point where she can hardly walk. So find out if they see many other patients with wg or are you their quinny (sp?) pig ! Also, I believe it is Imuran that you need a blood test first to see if are are able to take it..have you had one. Are you still taking pred and if so how much ??? Maybe they need to up your dosage. It sounds to me that you might want to check out other drs. Good luck and keep us posted.

[deanna]

Hi Alysia, yes I did have the blood test first before I was started on Imuran. I am seeing a Rheumatiologist and not a specialist in Vasculitis. I have looked at those centers, Cleveland Clinic, Mayo, Johns Hopkins, and others. Not on prednisone, only one time when I first got ear problems, before I was diagnosed, and the ENT thought steroids might help.they didn't. Dosage on Imuran was increased but my liver tests became elevated and we had to decrease. I am not sure what I will do right now. I see my PCP in Oct and will discuss with him. I just hope that with our weather changing and more people getting sick I can stay healthy.
thank you
d

[Lilly]

Hi Deanna, your message reminded me of something ...... when I was in the hospital and the doctors were trying to get the 3 positive pointers to say I had Wegeners, they were having problems deciding if they should test my kidneys. The reason being, there was little if any involvement at that time. Yes, the previous year, I had a couple UTIs and 1 serious kidney infection, but to say that my kidneys were totally involved like my nose and lungs, they just couldn't. I am not sure if they realized at the time that some patients have "limited" wegeners. And essentially, that is what I had. My urine had trace amounts of red blood cells. As time went on, about every 5 years, I would have a very scary episode of suddenly urinate pure blood, and blood clots. Boy does that look scary in the toilet!!! But ultimately, what was happening, was those trace amounts of red blood would settle in the bottom of my bladder. And then one day they would break lose and I would pee them out....Sorry for the lovely visual of that, but it is one interesting thing that has happened to me, but I have not heard of it happening to anyone else. Ill be keeping up with you, blessings!!!! Lilly