Hey Anna,
Sorry to hear about this new-ish development. I've been thinking about you recently. I can't add anything wise to your question because I've not been down that particular road, but I am going to say that I've been having some headache activity lately so I went to my doc (the good one - the rheumy) and told her about it and said I'd like to do something to nip it in the bud before it goes to a place that we have to start all over again with the heavy duty meds and high pred, and she agreed and has put me on imuran. I just took my first one today. You and I had our RTX at the same time, same day in fact - I was thinking about you getting infused while the magic elixir was getting pumped into me, so I think we might be getting some of our old symptoms at the same time.... just food for thought.
I also told my doc that I would like to work towards a drug free remission and she told me she doesn't believe that it really works. She said she believes (and she made sure I know this is her opinion only) that Wegs is always smouldering underneath and we don't know what sets off a flare so she believes that a maintenance drug for ever is the way to go the longest without having a flare. I said I'd really like to try going med free and she said in that case I'll have to find a different doctor. She sounded somewhat serious, but I think I'll try and work on her when I get to a better place, but that's a ways away yet. I know you've been med free for a long time, but maybe popping some maintenance drugs for a bit might help and then you don't have to go on pain meds, which we all know what can happen with that route....
Hope you feel better my friend. Sending you good vibes, and still looking forward to going for a run or a bike ride together sometime in the future... or even a ski
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