Northwest Louisiana

[fatboyslimsmom64]

Diagnosed early 2014, been on methotrexate only (other than meds for other conditions) since. ANCA negative, sinus/eye/tear duct involved. 53 yr old female, at least my kids are grownups. Can't imagine a child/young adult/young parent dealing with this.
Just tired of not getting better.

[Alysia]

Welcome to the forum. How can we call you ?
If you feel that you are not getting better it might be that the methotraxat is not working for you. It didnt work for me. I was on it more then a year and my wg continued to be active. Ask your dr. about switching to another med.

[fatboyslimsmom64]

Thanks so much! Had a headache when I posted so I quit part way. I'm Ann. Have asked about something other than MTX "since your disease isn't that bad we'll wait and see". Really don't have much option for a different rheum due to insurance issues. I'm ok with just skating by, but might like to get this in remission. Need my tear ducts repaired but can't while it's active. Then again, not sure if I want to manage a new drug, might affect work.

[Alysia]

Hi Ann, try to challenge your dr.: why does he think that you are not getting into remmision ? What can he suggest ? Does he understand that WG is ALLWAYS bad enough to get a serious treatment ? What is he waiting for ? I think you have waited enough. I would ask him to consult about you with vasculitis experts. Dont give up. Insist on getting a better care. You are not alone in this fight. We all had more or less fights with docs in order to get a decent treatment. Good luck and please update us.

[fatboyslimsmom64]

Thanks so much for the encouragement! I never know what to ask! The only other person I ever saw with it ended up with an open cavity where her nose was, then she died of lung/kidney complications. Can't really say that my family isn't supportive, but they aren't very lol. This WG is like the other things affecting me (compression fractures, bad hip joints), in being invisible. Anyway, enough whining from me for today. You've given me some good things to ask next time!