What can I expect now that I am reducing my meds???

[csgaippe]

Good Afternoon!
I am new to this forum and just recently diagnosed. I have been struggling with upper respiratory symptoms for over 2 years and was finally diagnosed in March. I live very close to the Cleveland Clinic and by the time I got there the Wegener's had inflammed my kidneys. I was put on Prednisone, 60mg, and Methotrexate, .60 mls injected once a week. After 30 days, I started reducing the Prednisone by 5mg a day every week and am currently at 40 mg a day. I seem to be having many more side effects from my meds now that I am reducing them. The night sweats are worse as well as the insomnia. Not to mention the "roid rage"! Have others had this experience? I am also experiencing ear pain again and my nose is feeling blocked and dry again. At my last appointment, most of the crusting in my nose was gone, but it feels like it is back. Is this just the effects of the change is dosing or is my disease rearing it's ugly head again?
Cathie

[elephant]

Hey, welcome Cathie...I go to the Cleveland Clinic too and see Dr Carol Langford. I have a feeling you are flaring with Wegeners. Tell your WG specialist tomorrow about your symptoms. Don't want it to get worse.
Yes the prednisone makes you crazy! I had to have family down here for months, I was pretty sick.

[Sangye]

Hi Cathie, great to have you in the group. Well, I'm really glad you already go to CC so I don't have to nag you about getting a Wegs specialist. (I hope I remember. If I slip a nag in at some time, just remind me)

I agree with Elephant that it sounds like you're flaring. I'm also wondering why they didn't use cytoxan or rituximab instead of methotrexate, since you have kidney involvement. The side effects of pred that you're having are worse now because you've been on high-dose pred for over a month. The longer you're on it, the more it imbalances the body. Have you been reducing the dose by 5mg a day or by 5mg a week?

[csgaippe]

It is so nice to know I am not alone! Before my diagnosis I asked my doc if maybe I was just having a nervous breakdown! :-)
I am reducing by 5mg per week. I will call my doc today and see what she suggests. I see Dr. Villa-Forte at the Clinic. My kidney involvement was mild; blood but no protein. I am due for more labs Friday in fact.
Thanks for the advice and I am sure I will have many more questions!
Cathie

[csgaippe]

I got a doc appt for Friday morning! Yeah!

[elephant]

Good, I am so excited for you...can't wait till Friday morning! Yahoo! To good health!!

[csgaippe]

I saw my doc this morning and was reminded once again why I like her so much! It looks like I have picked up an infection from my grandson. I was trying to be careful, but he is 20 months old and grandmas can't resist! :-) Actually, he was fine the night I was with him but the following day at daycare he spiked a 103 degree fever. Anyway, the infection is in my ears and my sinuses, so I am on an antibiotic. My Wegs is kicked up a bit too, so the doc increased my Methotrexate and said I can continue to decrease the Prednisone. I realized just how much I have to learn about living with this disease. I didn't consider an infection as I take Bactrim 3 days a week and I didn't have a fever.
Thanks so much for all your advice!

[Sangye]

I'm sure you'll hear this from everyone else-- keep an eye on that infection since Wegs likes to dress up in those clothes. If you're not a lot better in a couple days call your doc and let her know. I'm really glad you saw her today. Thanks for letting us know how it went!

[elephant]

Cathie, hope you get better. I am in the same predictment. Still have sinus issues, but deep down I know my Wegeners is mildly active. So anything will make it angry, if I rest and not exercise it is happy. It likes Bactrim very much, like if I take Bactrim daily my sinus issues are better. This is not good for me to take since I have a kidney transplant and other side effects to add to that using Bactrim. I really need to discuss this with my WG in June. All my other organs are good, not showing any type of flaring.
Cathie, glad you like your Rheumy!

[Sangye]

Elephant, I hope the Wegs falls back to sleep on its own. Take it easy and maybe that'll convince it to go back to sleep.