Suspicion of MS after Wegener's Granulomatosis

[annekat]

Anne,
How long does it usually take to develop saddle nose?

It may be different for everyone. I was undiagnosed and untreated for 2.5 years and it must have started to happen during that time, but I never noticed anything until around the time of my diagnosis. It seemed to happen all of a sudden, with no warning signs such as pain or visual clues that I noticed. Others have seen their nose change shape little by little and/or feel a lot of pain in the area before it happens. I think once someone is properly diagnosed and treated, and they see progress being made in their bloodwork and symptoms, if saddle nose hasn't happened it is then less likely too, although it still can. That is all I can think of to say about it right now. I know there was a thread on it not too long ago where you might get more answers, or on other threads in the archives.

[kmac14]

I didn't get the saddle nose and that has been a very long time. They diagnosed by taking a huge chunk out of my nose (horrible and very painful memory) and I do have a damaged septum inside my nose. My ENT said to me that if it ever did occur then there is corrective surgery.

[Carol]

After bing sick for about an month and being on Imuran, Pred and Bactrim I lost feeling in both my arms within about 1/2 an hour and had to then start on cyclophoamate? infusions. I also lost sight on one eye and had to have the Pred upped. regards
Carol Australia

[hrnn]

Hi! a quick update:

the rituximab treatment was posponed until last week due a runny nose and that the doctor didn't want to take any chances. bad news is she had a severe allergic reaction to the rtx so it had to be stopped after 30 minutes and it's definitely off the table.

so this week we'll meet with the doctor to discuss the alternatives. so far it seems that his medication of choice is cyclophosphamide, which we are not exactly happy with due to its toxicity and the possibility of leaving her infertile.

if so far the aza and rtx didn't work, the classical options are what? mtx and ctx alone?

I've been googling and there are suggestive results on cellcept and also infliximab, but they are not yet mainstream choices.

would someone want to input on this?

thanks all!

[mrtmeo]

Cytoxan is the drug of choice when there is organ or life threatening symptoms.
If she had a problem with imuran, it could be due to a TPMT deficiency that she could be tested for or maybe taking a much lower dose to see if she reacts.
Mofetil and Imuran both caused my mom nausea, vomiting and diarrhea, so I am doing Mycophenolate Sodium which enteric coated and has a better tolerability.
There are studies showing Mofetil effective for induction of remission.
There are many immune suppressants out there, but not much data on their efficacy for vasculitis.
tacrolimus and cyclosporine are 2 I remember reading about.

Cytoxan is the big guns and sometimes necessary to put the disease in remission.
My mom only got one week dose of it, so don't know how well she would tolerate it on a regular basis but her nephrologist doesn't think she could handle it.

[annekat]

hrnn, I'm sorry the RTX didn't work. You did say your wife had a mild case to begin with, but it seems like now alarming things are happening that might make it more severe. You mentioned the stress she was having before this new stuff started, and I think that is SO typical. I don't know how many docs acknowledge the stress factor; I'm not even sure how much mine does. But I think it is very real and should not be dismissed. So whatever is going on, if she can't take RTX and they decide she should take CTX, I wouldn't worry and go ahead and do it, as far as the toxicity factor goes, since you can do a lot to avoid that being a problem, the main thing being to take it in the AM, drink lots of water, and urinate often! Another would be to be on the correct dose for her body weight and go for it with the idea of making it as limited a number of months as possible. Some say no more than three months for CTX but many of us have been on it for much longer. As soon as significant improvement is seen, it would be ideal to switch to a milder drug such as MTX or Imuran. But all the drugs have their issues. As for the fertility issue, I can understand your deep concern over that. I would do some more investigating as to how many women have been able to go ahead and have babies after being on CTX for some time. I think it is possible and that there has been discussion of it here on the forum, so you can search the archives. Good luck with it all, and we look forward to hearing how it goes!

[hrnn]

Hi! thanks for the replies!

I spend the day doing research yesterday and I found a review article comparing the present alternatives to medication for ANCA+ vasculitis available (I posted it in the drugs/medication section of the forum). I did also some research on some particular medications such as cellcept, IVIg and even an experimental one (which I can recall the name at the moment) which struck me as the most suitable choices for the present condition of my wife. I'll look more papers on the subject so I'm prepared to meet the doctor on thursday.

By no means I'm considering myself an expert, but from what I gathered so far, although she is having now her eye involved, I don't think she qualifies as a severe case (I should read some more on the disease activity scales as well), so I'm inclined to consider the CTX an overkill (pun intended) and that less aggressive alternatives are just as appropriate.

Still lots of reading to do.

Thanks again everyone!

[drz]

so this week we'll meet with the doctor to discuss the alternatives. so far it seems that his medication of choice is cyclophosphamide, which we are not exactly happy with due to its toxicity and the possibility of leaving her infertile.

would someone want to input on this?

thanks all!

Some people have harvested eggs before under going chemotherapy just in case they are needed later.

[hrnn]

Hi!

yes, harvesting eggs is a posibility but very expensive to say the least. we are considering it, of course, if it comes to no other alternative than taking this medication.

an update on the case:

the situation with her eye got worse. she got an inflammation in the area again which is pushing the eyeball out giving her double vision. they haven't decided yet if what appears to be pushing is a granuloma or not, so maybe we are back on GPA.

after insisting a lot for alternatives the doctor is going to give her a mix of infliximab and metroxetate starting anytime this week, and she got her prednisone up to try to get the eye back to normal.

hopefully this will finally work. I'm somehow possitive about it as I read good things about mtx in general as the prospect of mixing it with infliximab as well.

thanks again for the feedback, everybody!