I have internet again

[pberggren1]

Hello Everyone:

Good to be back. I missed you all and being able to read all the posts. You are all such beautiful people.

I was able to talk on the phone with Suzanne from Ohio a few days ago. It was sure nice to talk to someone again that has WG's.

May everyone have a very Joyous Christmas Season.

Over and Out,
Phil of the north

[elephant]

Happy Holidays to you too Phil from the North.

[Sangye]

Hey Phil!
Welcome back! How've you been?

[andrew]

Welcome back bud! Sux having no Interwebs!

[Doug]

Welcome back, Phil! It's hard to imagine life without internet.

[pberggren1]

Thanks Guys,

I haven't been feeling that great the last few months. Joint pain and tendon pain. Sinuses are worse too, there is more mucus, crusting, and bleeding. Feeling more slugish in the energy department as well.

Hope you are feeling well Sangye. Last I heard you weren't doing so well.

[elephant]

Hi Phil of the North it sounds like you have a Wegeners flare going on. I hope your doctor knows this. Sounds like they need to up your med or change your medicine to get you back to feeling better. Sorry you going through this during the Holidays. Get better soon.

[Sangye]

Phil, I agree with Elephant. Please get to your Wegs doc and have him/her check you out. It can go south pretty fast!

I'm doing a lot better than the last time you were on. The ritux seems to be helping a lot. I'm not having all that joint pain and can breathe easier. After the holidays I'm going to start dropping the pred by 1 mg/month. I'm on 4 mg but it acts like 20 in me. My Wegs doc said no faster than 1 mg/month. Still have some major issues that we haven't been able to solve, but several things are better.

[pberggren1]

Thanks Sangye and Elephant:

My blood work taken back on Nov.26 was fairly good. My CRP and Sed Rate were good. I Know that things can change quite rapidly with WG. My C-ANCA was 7. It has been holding fairly steady the last few months going from a 3 in June to a 7 in Oct. I was supposed to see my Rheumy on Dec. 9 and again on Dec. 15 but had to cancel do to bad weather. My next appointment has been rescheduled for Jan. 29. I also know that the ANCA can not always be a reliable marker, but for me my C-ANCA is always up during a flare.

Even with this info, Sangye, do you still think that I should try and contact my Rheumy immediately and if unable to go to the hospital where she works?

Please let me know your opinion.

[Sangye]

I do think you need to get in sooner to your rheumy Phil. Your blood work is a month old. Way out of date if there's concern about a flare. Symptoms should always be the first and most important consideration--especially "reliable" symptoms like crusting, joint pain, fatigue.

I learned a lot from this current flare (and having it managed by a Wegs specialist). Each of the Wegs drugs take 1 month to start working fully. If you don't treat the start of the flare, you wind up having to use bigger guns and bigger doses to knock it down, hoping the disease doesn't move faster than the drugs.

If it were me, I'd try to get in to the rheumy within a week. You can ask for orders to get blood work beforehand so s/he will have the results at your appointment.

(BTW Neither my Sed Rate or CRP go out of range until I'm almost in the ICU. Hard to believe, but true!)