JanW
03-19-2011, 06:57 AM
Just wanted to update you guys since I had back-to-back appointments with my great rheumy and great ENT.
I got the go-ahead yesterday to start reducing mtx by one pill (so down from 17.5 to 15 mg) every few weeks with the goal of going off of mtx entirely. I will have blood draws every six weeks during this period (of course sooner if I feel anything different at all).
All of my blood work remains normal (for me). My P3 remains at 63, my ANCA remains positive. My blood pressure is now normal (last time it was high), and the nurse did something weird -- she lowered the bed so that my feet were on the floor, made me stay still and not talk -- never did that before.
My rheumy discussed the possibility of doing the mtx wean with a possible rtx 'cover' due to my ENT's rule against doing saddle nose surgery on medicated patients (more about that in a minute). The theory being that you are 'medicated' on rtx during the infusions, but you are not taking ongoing medication (e.g. mtx). There is some concern about wound healing with mtx. I asked him not to focus on my nose and what would he do if I didn't want to get it fixed. He said that he would go with simply reducing mtx and he was guardedly optimistic that I could maintain remission without drugs. I think he was thinking that I would be horribly disappointed if I either couldn't maintain remission and get my nose fixed, or could never get off drugs entirely and get my nose fixed. Rtx gives him the option of treating me with that and getting my nose fixed before the second series of infusions (which would probably be minimum six months apart). He does 2 infusions, two weeks apart by the way.
I told him I want to give drug free a shot, and, if that didn't work, would probably just go ahead and do rtx, and then 'plan' to get my nose fixed.
Went to my ENT today, and my windpipe is still at 6.5, so only slightly off of my highs at 7.5 (you non stenosis people probably are at an 8 or 9). Still can breath comfortably. Surgery was one year ago.
Best news is that he will now consider me a serious candidate for surgery when I reach 5 mg of mtx, because he says that in terms of the risk profile, I may want to take the risk of having it done then (depending on how motivated I am). Because I'm not seeing him until well into the summer, hopefully I am at that point then. I can have the consult with his plastics guy at the same time.
Apparently in the fall he operated on someone from Calgary and her doc was so tough he/she wouldn't lower her more than 10 mg and only during the three months prior to surgery. She did very well and her saddle was very bad, he said.
I think it really is a wound healing issue, because he said the surgery to remove cartilage is much more dangerous than anything with the nose which is really simple. Also, no black eyes or anything (which I thought there would be, but they don't break bones on us Weggies so as to not disturb vessels), so really you could have it any time (does not look gruesome). It is also not very painful. Phew!
So, we'll see how it goes on the reduction. I feel well now and hope to stay that way.
I got the go-ahead yesterday to start reducing mtx by one pill (so down from 17.5 to 15 mg) every few weeks with the goal of going off of mtx entirely. I will have blood draws every six weeks during this period (of course sooner if I feel anything different at all).
All of my blood work remains normal (for me). My P3 remains at 63, my ANCA remains positive. My blood pressure is now normal (last time it was high), and the nurse did something weird -- she lowered the bed so that my feet were on the floor, made me stay still and not talk -- never did that before.
My rheumy discussed the possibility of doing the mtx wean with a possible rtx 'cover' due to my ENT's rule against doing saddle nose surgery on medicated patients (more about that in a minute). The theory being that you are 'medicated' on rtx during the infusions, but you are not taking ongoing medication (e.g. mtx). There is some concern about wound healing with mtx. I asked him not to focus on my nose and what would he do if I didn't want to get it fixed. He said that he would go with simply reducing mtx and he was guardedly optimistic that I could maintain remission without drugs. I think he was thinking that I would be horribly disappointed if I either couldn't maintain remission and get my nose fixed, or could never get off drugs entirely and get my nose fixed. Rtx gives him the option of treating me with that and getting my nose fixed before the second series of infusions (which would probably be minimum six months apart). He does 2 infusions, two weeks apart by the way.
I told him I want to give drug free a shot, and, if that didn't work, would probably just go ahead and do rtx, and then 'plan' to get my nose fixed.
Went to my ENT today, and my windpipe is still at 6.5, so only slightly off of my highs at 7.5 (you non stenosis people probably are at an 8 or 9). Still can breath comfortably. Surgery was one year ago.
Best news is that he will now consider me a serious candidate for surgery when I reach 5 mg of mtx, because he says that in terms of the risk profile, I may want to take the risk of having it done then (depending on how motivated I am). Because I'm not seeing him until well into the summer, hopefully I am at that point then. I can have the consult with his plastics guy at the same time.
Apparently in the fall he operated on someone from Calgary and her doc was so tough he/she wouldn't lower her more than 10 mg and only during the three months prior to surgery. She did very well and her saddle was very bad, he said.
I think it really is a wound healing issue, because he said the surgery to remove cartilage is much more dangerous than anything with the nose which is really simple. Also, no black eyes or anything (which I thought there would be, but they don't break bones on us Weggies so as to not disturb vessels), so really you could have it any time (does not look gruesome). It is also not very painful. Phew!
So, we'll see how it goes on the reduction. I feel well now and hope to stay that way.