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

[Skempins]

Hi everyone,

My symptoms that lead to my diagnosis were bad breathing (turns out i had a granuloma in my bronchus tube, right where the trachea splits off), pain and swelling in my hands, pain in my joints, nosebleeds, and tingling in my toes sometimes, although I can't tell if that was related to the GPA or not. It's almost been a year since I was diagnosed.

My rheumy allowed me to go lower on my methotrexate when I was feeling better months back (feeling better symptom-wise, but was having terrible muscle pain and nausea, so I thought it might be the methotrexate). I was already weaned off of prednisone at the time. Going lower in my dose helped with the nausea a lot at least. Not the muscle pain, as far as I can tell.

I went to my rheumy a month ago and was having worse breathing, more pain in my joints and hands, sinus pain and some nose bleeds again. He and his fellows decided I should go back up to my original dose of methotrexate again (along with vitamin A, in hopes of reducing the nausea I had last time), go for a pulmonary function test, and to go back on prednisone. My rheumy asked me to email him right after getting my PF test done (I had originally had it done at the hospital in my home town, so he decided I should do it there), and he'd let me know when to go back on prednisone. I think this was in case the tests didn't show anything or I needed more tests.

Well, I had the tests done over a week ago, and the results are still not reported, according to my rheumy's office! So I haven't heard from my rheumatologist as to when to begin the prednisone.

So, a couple of things...

• My rheumy has specialized in Wegs, written lots of medical articles, things like that, so I trust him, but I do find it difficult to get a hold of him sometimes because he's such a busy doctor in a big hospital.

• Just a note that the vitamin A has really helped. I take it a few days before and after methotrexate.

• I've gone over a month without the pred. My hands are hurting still, my breathing's still not awesome, my nose hurts often, and now I'm also sensitive to light, which has me a bit concerned. I have been taking work off quite a bit because if I focus too much or get stressed, I feel unwell. I have an awesome manager who reduced my workload, so that's helped, too.

• But, do I really need the prednisone? I didn't love it last time (who does?) and have increased my methotrexate. But, I don't want to go without it in case the disease is sneak-attacking me, making things worse without me realizing. On the other hand, maybe I'm just a hypochondriac... I saw my Optometrist yesterday who said my eyes look normal. But what if light sensitivity is a warning sign and you can't see anything yet?

If anybody has experience with light sensitivity or has advice regarding whether I should be on the prednisone or not, please let me know! Regardless, I'll wait until my rheumy gets back to me I think to hear his advice.

Also, does everyone need their ANCA level tested again, or only during diagnosis? I've only had it done once.

THANK YOU!