Newly Dx'd with WG

[Akomensky]

I was just officially diagnosed 5 days ago. Suspected of WG for about a month. I have been having "off and on" joint pain since February. Thought it was because I am a big guy, 45 yo, and just "time taking its toll." Then a few weekends ago I was in Philly for a meeting and noted this weird "rash" called Palpable Purpura on my lower left leg - all happened over the course of a night. The next morning, woke up and there were even more spots of this rash. By that evening, my knees were hot, swollen, and making it off of the plane back home was a challenge.

Went to the ER the next morning (I am a nurse and hate ERs so you know it had to be bad). Kept me for the better part of the day, ran craploads of bloodwork, and the only things out of the ordinary were a high sed rate and a low hemoglobin and hematocrit.

Saw my PCP the next day and she immediately honed in and drew ANA labs, Rheumatoid labs, CRP, and ran a urinalysis. It was the simple UA that began the process of movement towards a vasculitis diagnosis. 4+ protein and 4+ blood in the UA. Within the next couple of days, the ANA was positive, the ANCA was positive, the MPP (Proteinase 3) was positive. Immediately in for a kidney biopsy and the fateful result of "segmental, necrotizing and crescentic glomerulonephritis. A Chest XRay showed a possible granuloma.

In retrospect - I had a serious case of sinusitis beginning in Feb that would not resolve over 3 months. FInally, it just kind of went away, but having had chronic ear problems since a child, I didnt consider this to be out of the normal. Cant blame the ENT doc because of my previous history.

Anyway, started Prednisone 80mg daily, and Cytoxan 250mg daily on Thursday. Being a nurse, I know the seriousness of the side effects, but...its not the same as being a patient. Would be very interested in sharing personal strategies how to combat the side effects of both the prednisone and cytoxan.

Since starting both meds, have had bad headaches and slight dizzinesss about 8-10 hours after taking the meds. Happens everyday now. Wondering what I can do to reduce the symptoms or wondering if this is something that I will have to adjust to over time.

Anyway, hope to learn alot from those of you who share their experiences.

Andrew

[Terry]

Andrew, at this point, all I can do is offer you my condolences on your diagnosis, and good luck with your treatment. I still haven't been officially diagnosed, but have many of the symptoms. My nasal biopsy is on Thursday. Original sed rate, RA factor, and ANCA blood work were negative, tests have been redone. I've had what seems to be a sinus infection all year. Without Prednisone, my nasal passages swell shut. I've had red blisters breaking out on my nose all year as well. In August, both my knees got stiff and weird feeling on the same day. Within a couple of weeks, I needed a cane to walk, and as soon as I was put on Prednisone, it cleared up. Currently, I'm on 40 mg. Prednisone daily to keep my nose open.

There are people on this board with lots of experience who will be very helpful to you. God bless, and best of luck to you.

[andrew]

Hi mate...
It's good to have another 'Andrew' on this forum. I was starting to feel lonely

Welcome to the forum. Please feel free to turn up any time and ask anything you like.

As far as the headaches and dizziness are concerned, I can't say that I've had those symptoms with that medication.

Drink lots of water when you're taking Cytoxan. You need to flush your bladder to prevent any remnants sitting in your bladder for too long.

The dizziness/headaches could be a side-effect of the Prednisone. You need to check with your doctor if you're still getting either one.

Usual Prednisone side-effects are increased appetite and what I call 'Pred-head'. Most people taking Pred will get a rounded face. Some call it moon-face. It's not horrendous. I reckon it made me look more huggable

[Terry]

"Pred-head" - I like it! Yeah, maybe our round faces are more huggable!

I have a question about brain fog. Do you ever feel like you can hardly remember the past week or day or month?

[RCOSSIO]

Because of the pred and my round face my wife for Halloween decided to paint my face orange, placed a candlestick on my head put me on a window sill and started calling me "Jack"

[andrew]

Because of the pred and my round face my wife for Halloween decided to paint my face orange, placed a candlestick on my head put me on a window sill and started calling me "Jack"

HAHAHAHAHA!!!! BRILLIANT!!!!

[Terry]

Because of the pred and my round face my wife for Halloween decided to paint my face orange, placed a candlestick on my head put me on a window sill and started calling me "Jack"

LOL!! Actually, I think I qualify to be the Jack o' Lantern this year.