Just getting started

[Terry]

Hi there everyone, my name is Terry, and I was diagnosed within the past week. I have had symptoms for a long time, many of which are so similar to other things, I think it's hard to tell what is causing what. 20 years ago, I was diagnosed with fibromyalgia (when they still called it fibrocystitis) and currently take Lyrica for that. Also for the past 20 years, I have struggled with what I call my runny stuffy nose. Within the past 6 months, I've been on and off of Prednisone along with antibiotics for a suspected sinus infection. It seems no amount of antibiotic will get rid of the yellow/green mucus, and a CT scan showed my sinuses are not obstructed, but my nasal passages are swollen shut. After several days on Prednisone, my nose is open now and the yellow/green stuff has stopped.

I was diagnosed by an Ear, Nose, & Throat specialist and haven't seen a rheumatologist yet. Even before this diagnosis, I was suspecting Rheumatoid Arthritis because of an acute situation in my knees, swelling, pain and difficulty walking to the point where I needed a cane. The Prednisone has helped a lot with that. I have a chronic problem with trigger finger which can either be attributed to R.A. or W.G. The ENT ordered blood tests to rule out R.A. and confirm W.G. He saw granuloma in my nose with a scope that looked something like the tentacles of an alien (LOL!).

As you can see, I have much going on and it may be hard to figure out what is caused by what. I also have a problem with what seems to be excessive kidney output and if I don't take cranberry tablets morning, noon, and night, I get a bladder infection.

Anyway, I'm just now sorting out everything I've been going through for the past couple of decades, finding new answers for old problems, and addressing annoyance symptoms (runny stuffy nose) that had now gone into a full blown problem I can't live with anymore unless it's treated. Until recently, Afrin opened up my nose so I could breathe, but I can't breathe anymore without Prednisone.

[andrew]

Hi Terry! Welcome!
On the one hand it's a bummer that you have WG but on the other, it's good to finally find out what's been bugging you all this time

I had viral arthritis in the weeks leading up to diagnosis. It was murder! Same for the sinus infections.

It's likely that you'll be given Cytoxan as well which is the standard treatment for WG along with Prednisone. Some doctors will also do a biopsy (kidney or lung) to confirm diagnosis but it sounds like your doc has sorted it out already.

Let us know how you go with the Rheumy and in the mean time, feel free to ask anything you like.

[Terry]

Thanks, Andrew! Last night I was reading here about tinnitus, and I have that too. In fact, it was the ringing, buzzing ears that caused me to go to this ENT in the first place. It's starting to look like lots of things that have been going on over the years can be explained with a diagnosis of W.G. You are right that it stinks to have it, but helps explain what I thought were a lot of unrelated health issues. I can't get in to the Rheumy until the 18th of October. We have a shortage of them in our area, and it's the best I could do.

[andrew]

I can't get in to the Rheumy until the 18th of October. We have a shortage of them in our area, and it's the best I could do.

Ahh, what a pain! Literally! I hope you're ok until then. I guess though if you've gone through all that hell until now, another 6 weeks will seem like nothing

[Terry]

I think my ENT and PCP will keep things going until I can see the Rheumy. The ENT has me on Prednisone right now, and that's helping a lot with the swelling my nose, so at least I can breathe again, and it's helping my knees too, but I'm already in the "weaning off" phase, so I don't know how that's going to go. I hate to think of it, but I think if the symptoms start up again, they'll get me back on it.

[RCOSSIO]

Six weeks...no no no..you need to get to a Rheumy now. WG is a violent disease with serious repurcussion to your organs. You have to take this seriously because of the rapid nature of WG. Don't want to sound to alarming but tomorrow first thing is to look for a Rheumatologist or Neurologist who can assess the disease and begin treatment.

[Terry]

Wow Richard! Maybe you're right! I'll make some calls tomorrow and see if I can get in sooner. I am seeing my PCP on Thursday and was going to wait and see what he has to say.

[RCOSSIO]

Terry,

I am glad to hear.. just today I spoke to my Rheumy regarding your long term wait for a Doc and he agreed you need to GO NOW.

He said if I had waited I would have probaly gone into renal failure in about 3-4 weeks. My creatine levels are normal now after 3 months of treatment and when I was diagnosed initially after 3 days in hospital, the treatment was started immediately and my body started responding well to the treatment.

Please Terry...don't delay!!!!

[Terry]

Thanks Richard. I'm going to see my PCP tomorrow and he's going to order the necessary tests so we can catch any renal involvement. I'm now weaning off the Prednisone the ENT put me on (per his orders) and I think the PCP will stop that weaning and get me back up to a therapeudic level. I was starting to feel pretty good on 30 mg a day (although not perfect), but now I'm down to 10 mg. a day and clearly need more. I probably really need more than 30, and we'll see what comes of that. The preliminary blood test results have been faxed to the PCP by this time and we'll go over that tomorrow. I'll let you know what happens.

[Terry]

Well, I saw the PCP Thursday and he's ordered a bunch more tests, including a kidney panel, but wants me to be off the Prednisone for 5 days when the blood is drawn. Today was my last dose, so I'll get the blood drawn on Thursday. Wednesday, I'm going back to the ENT for a follow up, and if it goes as I think it will, he'll put me back on Prednisone until I see the Rheumy. The good news, though, is that the blood work he ordered all came out normal - that is to say - the ANCA was within normal range. But if my research has yielded anything, it's that you can't go by blood work alone. I've been researching another disturbing symptom that I've noticed in the past couple of weeks - that being an ammonia smell in my sinuses when I sniff (trying to clear it out to get some air in there!). Have any of you ever had that or heard of it?