Recently Diagnosed

[Kathie28]

Hello everyone!
I have been reading your posts for a couple of weeks and feel very fortunate to have found this site. I was just diagnosed January 14th after 8 months of various problems. I started out with sinus problems and severe joint pain soon after having my first child. They first thought I had rhumetoid arthritis. I wasn't connecting the two different problems. In November I developed a cough and started coughing up blood and suddenly I had horrible blood test results. I was severly anemic and my kidneys were in trouble. I was sent first to a Pulmanologist who listened to all my symptoms did a CT and blood work and suspected Wegners.
My rhumetologist then confirmed the diagnosis of Wegners and I am now on 60 mg of Pred. I was given Ritunxin last Monday. I am suppose to get round 2 of Rituxin on Valentine's day. Of course now I have come down with a cold and infection so I don't know yet if I will be able to get the treatment. I started taking Avalox yesterday. I have also started developing a rash on my legs that looks and feels like a sunburn. Has anyone ever had this as a response to medication or could it be the Wegner's? I am going back to the doctor tomorrow so she can look at it. I feel completely overwhelmed at the thought of batteling this disease tyring to be a good parent to a one year old and working in the school system where everyone around me seems sick. I am terrified of anyone being sick because I seem to catch everything since starting the Pred. A stomach virus put me in the ER just 3 weeks ago. This is such a scarey battle and it is comforting to know there is a group like this.

[elephant]

HI Katie, the rash could be Avalox or wegeners rash. It is best to have your doctor look at it. Sorry you not feeling well. Hopefully your infection/cold will go away soon. Are you seeing a Wegeners specialist. We all like to ask the new ones!

[Brooke]

Hi Katie, welcome to the group. Sorry you are feeling yucky. I agree with Elephant, have your doctor look at your rash. Also, make sure you are seeing a Wegener's Specialist.

[Kathie28]

I haven't been to a wegs specialist yet but hope to do that in the near future. Its stinks that all the clinics are so far away. I am in sc. I did see the doc today about the and she thinks it is a reaction to a med. It could be prilosec or the rituxin. I am stopping the prilosec and taking benadryl. She says if it is the rituxin we are still going to continue because the rash is not life threatening and the medicine is too important so I am hoping it is the prilosec.

[mchughjj]

In terms of SC resources, MUSC in Charleston has a specialist who deals with - and has published novel treatments for - WG (I am a recent SC-based WG diagnos---ee). I can provide details if you'd like.

Best wishes, Kathie.

John

[elephant]

I live in SC and use to go to MUSC in Charleston, I stopped because I wanted to go to someone who see's hundreds of WG patients...MUSC doesn't. I travel to Cleveland Clinic in Ohio once a year to see Dr Langford.

[Sangye]

Hi Kathie, welcome to the group. I'm so sorry you're having to deal with this during your baby's first year. That must be so much more difficult.

Here is a thread that can help answer some of your questions: http://www.wegeners-granulomatosis.c...need-know.html

Meanwhile, I agree with those above that you need to get to a vasculitis center as soon as you can. They've seen it all. I don't know if you can get a rash so many days after a rtx treatment. Maybe, but it seems odd. The biggest risk seems to be during the infusion.

I'm very concerned about you working in a school during this initial phase of treatment. Wegs itself lowers your immunity (when it's active). Pred does. And rtx really does. Infection is a major problem and a simple cold can turn life-threatening in no time. What is it that you do in school? I'm wondering if it's possible to change how/where you work to limit your exposure.

[mchughjj]

I live in SC and use to go to MUSC in Charleston, I stopped because I wanted to go to someone who see's hundreds of WG patients...MUSC doesn't. I travel to Cleveland Clinic in Ohio once a year to see Dr Langford.

That sounds like good judgment. There may not even be hundreds of cases in SC. For myself, I will keep all options on the table. I probably wouldn't travel long distances without evidence that other systems are involved or my case is showing things that would require extra-special diagnostic experience or capabilities. As of right now, my case seems "uninteresting" as this disease goes. My initial diagnosis was based on a mouth biopsy and I didn't have other symptoms at all.

[dunkie2202]

Hey Kathie, you really need to be careful around others. You are immuno-suppressed and I agree with Sangye, you will catch whatever is floating around but much worse than any one else. I can no longer work because of my Kidneys. I limit myself to outside contact. When my grandkids have any sign's of a cold, my kids keep them away so I don't catch it.

[drz]

That sounds like good judgment. There may not even be hundreds of cases in SC. For myself, I will keep all options on the table. I probably wouldn't travel long distances without evidence that other systems are involved or my case is showing things that would require extra-special diagnostic experience or capabilities. As of right now, my case seems "uninteresting" as this disease goes. My initial diagnosis was based on a mouth biopsy and I didn't have other symptoms at all.

Does your treating rheumatologist consult with other hematologists who are recognized experts i this field? This is often and easiest way to get another view on what treatment or additional evaluation is needed.

According to the Vasculitis Foundation Wegener's Granulomatosis Disease is found somewhere between 33 cases per million to 50 cases per million population. That means SC should have around 150-250 cases. These numbers also suggest there are about 10,000-15,000 of us in the USA.