Prednisone required? And new "symptom"(?) - light sensitivity

[drz]

Any eye symptoms should be taken seriously and checked out ASAP. I remember at my first followup session after eventual release from hospitals, my GPA treating physician said to me. Find an eye doctor who will see you immediately if you have any new visual symptoms. You lost your hearing to Wegs so lets try save your vision.

I may be a minority but happen to be one of the lucky ??? ones whose ANCA scores do seem to track my Weg activity. It helps the doctors sort out the degree of severity of any increase in inflammation markers and my residual symptoms brought on by infections and my normal fluctuations with this disease. I don't get the ANCA labs done very often like my other routine labs but it is usually done when the inflammation markers have increased along with residual symptoms.

[vdub]

Do you mean a "light sensitivity" as in easily sunburned or you like a darkened room? I noticed during the early years that I preferred a darkened room. No one ever knew for sure if I was in my office because I always had the lights off. I'm not that way so much anymore, but I have no idea what made the change.

As far as you busy rheumy.... I had the same situation. When I was first dx'ed, my rheumy was a noted specialist for vasc AI's and was very busy. Not to mention he was several hundred miles away. After he got me stabilised, I told him I was going to switch to a local rheumy for maintenance and go to him if things started getting rough. That left him open to concentrate on new people who needed his talents worse than I did. I continued to see him about once a year for a couple years and then quit altogether. I know if things went south, he'd see me right away, but I haven't needed it. My local rheumy has been quite satisfactory.

MTX is probably what is causing your discomfort. You mentioned taking Vit A, but are you also taking folic acid? Generally, 1mg to 2mg of folic acid daily except on mtx days will be rx'ed. The folic will make you feel better since the mtx depletes you folic acid levels.

Generally speaking, 20mg/weekly of mtx is reasonably tolerable without many side effects. If you are taking anything above that level, then you might feel poorly for a couple days after taking it. Everybody is different of course.

As for pred.... Pred makes you act poorly and look poorly, but I don't know of any side effect that makes you feel poorly. Its actually just the opposite. You should feel pretty fantastic when on pred. Of course, everything varies depending on the level of pred you are on.

Remember -- none of us are doctors.