Your Thoughts

[sshiveley]

My WBC is elevated to 16.39, Segs and Bands are 13.20, C-Reactive protein 10.8, Proteinase 3 antibodies and ANCA still read Positive, no numbers given. My Doc is weaning me from 40mg down to 7.5mg, feeling it too! I drop 2.5 every 2 weeks until I am off of them. Feeling worse with each taper, see Dr. in November and another Retuximab infusion in Dec. Sherry

[Pete]

My WBC is elevated to 16.39, Segs and Bands are 13.20, C-Reactive protein 10.8, Proteinase 3 antibodies and ANCA still read Positive, no numbers given. My Doc is weaning me from 40mg down to 7.5mg, feeling it too! I drop 2.5 every 2 weeks until I am off of them. Feeling worse with each taper, see Dr. in November and another Retuximab infusion in Dec. Sherry

IMHO (I’m not a doctor), you still have disease activity. If you’re feeling worse after each pred reduction, you’re either tapering too fast or not getting proper treatment. You might want to talk with your doctor about returning to a higher pred dose (where you’re feeling better) or a change to your immunosuppressant/cytotoxic med.

How many GPA patients does your doctor see? If it’s a small number, you might want to either have him consult with a vasculitis specialist or refer you to one for treatment. If your doc balks at this, it may be time to find another doc.

I hope you and your doc can develop a treatment plan that allows you to feel better soon!

[sshiveley]

My Dr specializes in Vasculitis, I am hoping the rituximab in December will do the trick. Seems as though when I taper down, symptoms flare up again, gee, even my freakin heels hurt now. I taper 2.5 mg every 2 weeks, I'm at 7.5 now and I am feeing it. I see the Dr. again next month, will have to get her opinion. The double vison in rt peripheral isn't getting any better, but at least I still have my eyesight. Driving in unfamiliar areas is a challenge to say the least. Sherry