Symptoms

[manalolana]

Mahalo Marta! Yes, I love the beaches here! I used to live in Rome and came to Oahu as my first state in US and fell in love with the island that I never left. I just started my injection this past Friday so I am hoping to drive myself to a beach in a few weeks once my body gets adjusted to the toxic level.

[manalolana]

Here is one of my favorite quotes...
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." -- Mother Teresa

[Jack]

If it appears that the medication is not controlling the Wegs. you really must do something about it before more permanent and serious damage is caused. I understand your concerns re fertility, but if you are not here to enjoy children there will not be much point. As mentioned in a couple of posts, this disease can turn so very quickly and escalate into more dangerous areas. That is how I ended up having to have a renal transplant.

[Sangye]

Hi Manalolana, welcome to the group. I don't have anything to add to the great advice the others have already given you.

Marta, you need to get a brain MRI asap. You could be forming a Wegs granuloma behind your eye--not that uncommon. Please get your doc to order one.

[JanW]

Welcome, Manalolana!

I understand completely your fertility concerns, and I am sure that the specialists at Mayo do as well. Unfortunately, mtx is rarely a 'first line' defense in severe cases; it is used mainly for mild to moderate (I myself have a moderate case of WG -- severe subglottic stenosis, mild sinus involvement, saddle nose, joint pain) and have only ever used mtx on it's own -- not with pred -- but I'm pretty rare vs. the typical patient on the forum. Most people start on ctx or rituximab and pred at first. I'm not sure if rtx has a better profile re: fertility preservation.

I guess what you would have to weigh is the fertility implications of 'stronger' chemo vs. the fact that you may be moving further and further away from goal of remission with mtx, and since you can't get pregnant taking that drug anyway (and for some time after, if I'm not mistaken).

[elephant]

Mahalo, you can have wegeners in your eyes, so it is important to see a eye doctor who specializes in autoimmune disease and knows Wegeners disease and what to look for. When I was having a flare in my sinuses my left eye was very painful....i went around with pink eye on and off and it wasn't pink eye, it was the Wegeners. I didn't have any symptoms with the lungs, when I was having the symptoms that you stated the docs did a chest x-ray and found a shadow and then the had to do a CT the next day. The doctors kept me over night because they thought I was septic high fever and severe chest pain ( heart)? Even had a echo done on the heart, which I had many times before diagnosis.
I am on Bactrim DS, cellcept 2000 mg, cyclosporine 100mg and prednisone 6 mg to just keep the wegeners in remission. But I have a mini flare in my sinus and the doc had to double my bactrim and will see if that will work.
So just want you to know if you feel like something is not right, then be persistant. I learned my lesson, I was in denial for a long time.

[Brooke]

Welcome! I too have been to Hawaii, very beautiful! My husband is from Samoa so we spent a couple of days in Hawaii before going to Samoa a few years ago.
Sorry to hear you have Wegener's but as you will see this is a great forum to belong to.

[drz]

Aloha Jack,
Did consider Cytoxan as an option. I am a 35 year young single lady with hopes of having my own children soon and the side effect of infertility of the medicine was very discouraging for me that I opted out.

I got natural remedies such as cold green tea patches to sauna that helps alleviate much of the eye pain so I can work it's just that it only last for an hour of so. My work is very understanding and allowing me to work from home and come in to the office only when needed to be presenting in person.

I was hoping that eye pain may subside with decreased pred but from some comments here it seems like it's also a part of flare up.

Rituxan is also another stronger treatment that Mayo recommends for Wegener's disease. Did they discuss that option?

[Sangye]

Rituxan does not affect fertility like ctx does, because it's not chemo.

[manalolana]

Since I just started the injections this past Friday, I am hoping that in the next 4-6 weeks, it will start to work and hopefully taper down pred as well. Thank you so much for your advise!

PS - Your profile pic is very cool!