dangers of rixuan

[Meredith]

Always the ANCA - I would have to pull my sheets to tell you. Only thing new the doctor is checking is the Vitamin D, mainly due to the bone loss I had I am sure and was due to the prednisone. One thing I forgot was is it seems to be localizing in my eye(s). The prednisone makes it better but it happened twice last year and he was not happy about it. So now I get to add my eye doctor to the list of who I see. The only system I have when I know I am not doing well is I am so tired, especially in the mornings.

[pberggren1]

It sounds to me that you have been on ctx for way too long needlessly. Are you seeing a Wegs specialist?

[Meredith]

Yes - he is suppose to be one of the best in the southeast.

[pberggren1]

May I ask his name and what center he is at?

[NicShaf]

NicShaf -- mtx can be (and is) used as an initial treatment drug for cases of mild to moderate WG (such as mine). I think I have noticed an uptick in people here using it as a started drug...but I can still only speculate that more people here tend to be on the 'big guns' because people in a support group such as this are likely self-selected to have a more serious form of the disease and be seeking out answers (that is, if all WG ever gave you were nosebleeds and occasional tiredness, you'd go about living your life and probably wouldn't think of yourself as part of a 'WG community.').

My doc does compare rtx to mtx (though certainly NOT to ctx) with the belief that one is safe as the other (unproven long term, he knows) and you don't run the liver risks with rtx that you do with mtx. He wants to switch me to rtx if we can't make the mtx reduction work so that I can get my nose fixed (surgeon won't do it on mtx because it's not a technical 'drug free' remission).

I see, I didn't know that, but I had more than sinus involvement at dx, so MTX was presented to me as a drug for later in my treatment, RTX and CTX were my only choices at the time. You totally have a point, most people on here probably are more serious cases, hence their need to be here

[JanW]

I would be very suspicious of being treated on c-ANCA readings alone. Mine are high (don't know how high in that my doc's lab actually doesn't quantify it -- the reading is high or abnormally high and mine is the latter) and my PR3 is always around 60 (to give you an idea I have seen people on her in the single digits who are much, much sicker than I). I started out at 80 and haven't budged from 60 since maybe May and have been completely asymptomatic. Am reducing my meds (mtx only) by 2.5 mg every six weeks or so, provided bloods (CRP, ESR) are normal. I feel great. There are a few here who feel that the ANCA levels closely match disease activity, but that's not the case for many of us. I assume that you are still highly symptomatic and that's why he is going with ctx and rtx combo, which I have also not heard of (although I have heard of tapering from one drug to another with mtx and rtx. Highly unusual choice to be on ctx for so long, if other levels were/are normal.

[pberggren1]

My ANCA used to be relialble but with my recent flare the C-ANCA stayed very low but I was obviously flaring so back on ctx and pred and improved right away. My doc is not sure why the ANCA was not reliable this time but he did say that it could be in the future again but he doubts it and will test for it now and then anyway. I thought maybe it has something to do the the lung infection and antibiotics and he thought the same but there is no way of knowing for sure.

[ScreaminMeanie]

My first bout with this 20 years ago, they took me off the CTX only because I developed Pneumocystis pneumonia. I tapered off Medrol over the next four months, and my c-ANCA levels were still very high, but I went into remission for close to 19 years. I think I would ask my doc to try to get off CTX and see how it goes.

[Meredith]

Dr. Andrew Laster - Arthritis & Osteoporosis Consultants of the Carolinas