I will try and get it all in one post, as I see a lot of you want details (as do I).

Name: Mark Reinhard
Age: 38
Live in: Green Bay WI
Job: Purchasing Leader (office)
Diagnosed: 3-1-10
Doctor: Marlon Hermantanio – Rheumatologist (says he treated 5-6 WG case)
Second opinion: Not yet, but efforting

How it started: Early November of 2009 I started with cold symptoms, no cough, just runny & congested nose. That got worse and worse until I was completely clogged. I went to see my regular doctor(December 23) and she gave me some nose spray and told me to take calritin-d. Tried that and nothing. Went back in 2 weeks for follow up and was sent for a CT scan. Results for the scan came in and was referred to a sinus specialist. The sinus specialist (Dr. Diane Mayland) put me on a taper dose of Prednisone for a week and also gave me some spray and amoxicillin. That brought the inflammation down until the prednisone was gone. Went back end of January and was told that sinus surgery was my best option. Ok, so this has been bad but I wanted to put it off for a few months as I wanted to finish bowling season and coaching bowling and basketball.

Was going to have the sinus surgery early April. Then my sinuses really got bad and I said “ I have to do this now” and set my surgery for 2-24-10. On 2-11-10 I started to feel tired and very sore legs and hips at work, early in the day. I left about noon and went home to bed. Next day, I didn’t feel any better, so I worked from home. Saturday, I thought I might have strep, so I went to urgent care. Not strep, but gave me some prednisone and some pain killers. The next week was hit and miss until Thursday I was not feeling well at all. Very sore and fatigued. I woke up Friday (3am) and felt as if I were run over by a truck. My wife took me to the ER on Friday AM. They put in an IV and gave me some pain meds (ok but nothing to write home about). After chest x-rays, blood work, pee in a cup and exam--- go see a Rheumatologist. Ok, I am 38 how can I have arthritis? My wife and I left with a scrip for pain meds, a referral and a wonder if this ER doctor was wacked out. Saturday and Sunday were a little better because of the pain meds, Monday about the same but my wife was pissed because I was not feeling better, so back to the ER.

So I go back through all the same tests and an EKG, and the answer from this doctor---Go see a Rheumatologist. Ok, done. We set up an appointment for the next day as now my sinus surgery is only 2 days away. I go see DR. Hermantanio, and he gives me the once over. Tells me it could be 20 different things, and sends me for a blood test . Come back in a week.
Go in for sinus surgery, on Wednesday, walking like a 80 year old man. Get there at 7 am because the first CT was not good enough ($$$) so the need a new one (Striker Scan). My card says surgery scheduled for 9:55. Nurse comes in at 9:45 and we ask when I will go in to surgery and she says 11:45, and the doctor is running late. Great. So lay around and listen to all the other people get prepped for surgery, good times. Now, done with the surgery and recovery time and out of the hospital at 4pm. Go see the sinus doctor in a week.

Thursday through Monday, still not feeling good. Joint pain, fatigue, sinuses ripped up. I think that now the sinus thing is done that all of the rest of this will go away. Then Dr. Hermananio calls, and leaves a message on my voice mail, “your blood test came back positive for WG, we will discuss more tomorrow during you appointment”. Wham, right in the face. So guess what I do? Run to the internet, find out that this could kill me, and start planning my funeral. I wait until my wife gets home to tell her and we both spend an hour crying on each other. (Her mom died of kidney failure, lupus about 6 years ago)

So, now it’s Tuesday and my wife and I go to see DR. Hermantanio. We go In with a lot of questions. He explains the disease (limited at this time), tells me the treatment plan, and sends in the scrips. We ask how many cases he has had—5 or 6 , ok not his first go around, good. We ask a lot of the other standard questions and get the standard answers. Ask about a second opinion, he says fine, where do you want to go, we say we will get back to you. Now my wife asks a few questions about remission and if this is like lupus, and the doctor was short with her and didn’t look at her, she was sitting behind him. Now my wife thinks he’s a quack and really wants me to seek a second opinion. I said that’s fine, you set it up. To me, even though he is not very personable, he seems to know the disease and how to treat it.

Alright, here is where I am today: been on the meds for a week and a ½ and it has been up and down. Most days energy until noon then out of gas. If I push longer, I am shot the next day.


Med list:
Prednisone 40mg twice a day
Azathioprine 50mg twice a day, the 3 times in another week
Bactrim DS 800/160 twice a day
Gabapentin 300mg 3x a day
Also taking, calcium supplement, acid blocker and fasomax(1 every 2 weeks)
This sounds like a treatment that others have been through, so I feel comfortable right now. Doctor says it may be 4-6 weeks before I feel noticeably better. I hope I start feeling better.

Now for questions:

Anybody have any success with a prescribed sleeping pill on these meds?

What do you take for pain?

I missed my afternoon meds because I was vomiting, and felt like that bus ran me over again, sound normal?

Any suggestions on how to beat the fatigue?

Does it get better with time?

I feel about 75% in the am and about 50% after noon, what can I expect and when?

If you read all of this, thank you. I have read a lot of yours and plan to be here often. I hope some of you can weigh in on my situation, I look forward to it.

Mark Reinhard