new member from Illinois.

**hilhoff** · 11-01-2010, 04:32 PM

Hey there, I was diagnosed in June of 2010 when i was 19.
Everything started happeneing in the summer of 09, i was becoming achy and tired. I shrugged it off not thinking anything of it and continued playing softball and going to school. Well during the fall/09 everything seemed to get worse, my joints started swelling up to where i would not be able to get up on the morning and get moving. After telling my college coach that i would not be continuing with softball, something ive been doing since i was 5. It was a hard thing to give up, but i felt it was the right thing to do. Well in april/10 i had gotten cellulitis in my left and right foot. After 2 trips to the er i was finally admitted and was told i had RA. After being diagnosed with RA for over a month i started getting sick in June. I was sick for a week straight, couldn't keep anything down to eat and was miserable. Then for about a week i was fine able to keep stuff down and was on some anti nausea medicine, then it started back up again, was taken down to the er and was told it was the stomach flu. Well went to the doctor the next day and was admitted into the hospital where i had a kidney biopsy and CT scan done where they finally figured out that i had Wegener's. It was/is really scary having something like this happen to me, the one thing Ive been asking is why me? I was always active and i loved to play softball, and having to stop absolutely killed me inside knowing i can never play again. Recently ive been having problems with blood clots in both of my legs and have 2 in my lungs. I had a green field filter put in through my carotid artery. Was doing great until last night where i believe im having more problems with blood clots again, been on cumadin for a little over a month now. Hopefully the doctors visit tomorrow goes great. Wish me luck.

**DEE** · 11-01-2010, 05:23 PM

Welcome hiloff
you could not have found a better forum ,sorry to hear about the problems you have had and hope your doc appointment goes well
there are alot of good people on here , hang in there they will be along shortly to give you advice on anything you need help with,just ask
DEEx

**jola57** · 11-01-2010, 07:25 PM

Hello Hilhoff and welcome

**Psyborg** · 11-01-2010, 11:09 PM

Welcome to the board, hopefully your Doctor visit goes well.

**elephant** · 11-01-2010, 11:32 PM

HI HIloff, first of all Welcome! I grew up in Chicago,IL and lived in the surrounding area's. I was wondering if you are seeing a Wegeners Specialist? The closes one is Mayo in Rochester, Minn and Cleveland Clinic in Ohio. What medicines are you taking to keep the Wegeners quiet? Hang in there, you will get plenty of good advice, and we are here to help you through this.

**chrisTIn@** · 11-02-2010, 12:19 AM

Originally Posted by hilhoff

Hopefully the doctors visit tomorrow goes great. Wish me luck.

Wish you all the luck! But...is this doctor familiar enough with Wegener's Granulomatosis? If not, get a specialist who IS, as Elephant allready said.

Welcome here, from another 'Weggie', diagnosed in June of this year.

**hilhoff** · 11-02-2010, 01:05 AM

Thank you, it really means alot to have people that can help me through this.
I am seeing a specialist in Aurora at Dreyer Medical Clinic.
I'm on a bunch of medicine at the moment, Cytoxin(125mg), Mepron, Depto Lupern, Pred(65mg), Fossomax, Protonix, Tramadol, Tylenol 3 and a antibiotic that i cant remember the name of.
It seemed as if though i was having more good days than bad when i was up in the 80mg pred range, but the doctor had me down to 25mg but with this blood clot/infection scare he bumped me back up to 65mg for the time being.
But when on the 25mg i was having more bad days than good, didnt really want to do anything other than sleep, i can barley function enough to get to my classes each day.
Has anyone else had problem similar to mine?

**Sangye** · 11-02-2010, 01:30 AM

Hi Hillhoff, welcome to the group. Here's a thread just for you: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

I hope your docs know that Weggies are 23% more likely to develop blood clots. I had tons the month I was diagnosed. You definitely need a Wegs specialist to oversee your care. You also need to see a hematologist at the same institution (Mayo or Cleveland Clinic) for input about the clots. Raising pred won't stop clots.

I'm upset (but not surprised, unfortunately) that they'd put a 19 yr old just starting pred on Fosamax. Please look at this thread and talk to your doc about it. http://www.wegeners-granulomatosis.c...sphonates.html

Okay, those are your reading assignments. LOL!

**pberggren1** · 11-02-2010, 03:02 AM

Hi hillhoff,

Welcome to The Forum.

I agree with Sangye 100%. You need a Wegs Specialist and Mayo is probably the closest for you. Dr. Specks there is very good, a Pulmonologis, and there are others as well. Cleveland Clinic may also be an option. Dr. Carol Langford is there and she is awesome.

I am surprised that your doc tapered you down to 25 from 80 that quickly. And doing that probably accounts for your fatigue. Obviously your doc does not know Wegs.

Blood clots are serious, so please get to a Wegs Specialist as soon as you can.

Take care and God Bless,
Phil