New to forum, from CO

[COWG]

Hello,
I am posting for my husband Rick, who has had Wegener's for 12 years. He is quite ill right now. We have three teenagers who have grown up with a loving Dad that unfortunately was sick most of their life, never yet reaching remission. My husband started with sinus problems, loss of hearing, ( which thankfully he regained most.) Then it continued to bells palsey, and weight loss, as well as difficulty breathing. After multiple doctors, sinus surgeries and hospitals here in CO, we looked for symptoms on Web MD. We then drove to The Center for Rheumatic Disease in St. Louis. He was diagnosed that day.

Rick has been on Bactrim, Cytoxin, Methotrexate, Cell cept, multiple antibiotics from the recurring sinus problems. He has now had lung problems since last Christmas. Rick is being treated at National Jewish. He is presently doing Cytoxin infusions and has only had one Rituxin infusion. They are telling us to wait until Dec for next RTX infusion...not sure why. His lungs are not improving He is on 40-50 mg of prednisone daily as well. He continues to work, which amazes me, because he can't breathe out of his left lung.


We have learned to add laughter to our lives, continue strong faith, and learn to make last minute changes according to his health.

If anyone has better insight into RTX treatment, or has had similar lung issues-since this year was our first real lung problem-please let us know. The doctors at Nat. Jewish also injected steroids into his lungs, but that only alleviated the symptoms slightly for a few weeks. They told us a lung stint does not do as well in a dry climate. Any opinions on that?

Thanks for taking the time to read


COWG

[vdub]

I have no experience with RTX, but lots of others have and I'm sure they will add some comments. I just wanted to welcome you to the forum. It sounds as if you have had a long haul of things......

[mishb]

Hi COWG.

I also do not have any experience with RTX but if you put the full name in the search box, you will find many threads/posts on it.
However, many others should be along shortly to help you out.

Welcome to the forum, and I am glad you found it, on behalf of Rick.

I hope he feels better soon.

[me2]

I'm sorry your husband is not doing well. And to be working as sick as he is- he is one hell of a man. You didn't mention how long the RTX infusions were being spaced apart. Usually the spacing is six months apart but I do seem to remember someone here who is doing them closer together - like three months? I could be wrong. Did he get two infusions spaced two weeks apart?

I have been in a flare for over 12 years now and been ill like Rick. I have been able to do very little work in this time period. I did every treatment known to man and then some. I seemed to be on the leading edge of experimental treatments. Well, they kept me alive I guess and now I can report that I am slowly regaining my health. My improvement began about 6 months ago and although it has been up and down the general tragectory has been upward. Amazing.

I took several RTX treatments, spaced six months apart, before I began to improve. I also take prednisone of course (currently only 12mg- yah hoo) and 18mg of Methotrexate once a week.
It seems like some people respond quickly to RTX and some take longer.

If I can get up and start my life again after twelve years of mostly laying on the floor of my house, then I'm sure good things can come again for Rick. Probably much sooner, since he is on RTX already.
My twelve years of treatment included- Cytoxan, IVIG, Myfortic, Enbrel for a year (a later study found it to be 100% useless for WG) and years of prednisone. I have slowly lost about 30lbs of pred weight and am getting my muscle mass and tone back. I have been sick for so long it is like being born again. I hope Rick is born again very soon.

[Alysia]

Hi Co,
welcome to the forum. your husband is blessed to have you.
rtx is a miracle. it helps me when no other meds helped (I couldn't bear Imuran, mtx is not enough. never being on ctx). I got it in the first round 2 IV X 1000mg each in 2 weeks. after 6 months I got 2 IV X 500mg each in 2 weeks. I saw improvements after 3 months. when the 6 months are ending my symptoms are coming back a bit so I think this is the time to do another round.
good luck and update us !

[COWG]

Thanks for the responses. I will show these to Rick. It gives me hope that maybe some improvement will come from the RTX.
Have a wonderful day!

[annekat]

Welcome to the forum, COWG. There is a wealth of information, friendship, and support on here, and it's great that you found us. I'm sorry about all your husband's lung issues, and am taking notice, as I had lung issues at my initial big flare, which have subsided nicely after treatment with CTX. Other than that, it's mainly sinus and ear stuff, which has also improved greatly. But reading about your husband, and me2 and others, is a good reminder that things can always take a turn for the worse and may not always be so easy to resolve. I haven't used RTX but am fully aware I might need it in the future. I hope it works as well for your husband as it has for Alysia and others.

As for the lung issue, I live in a mostly damp climate, and don't know if that may have helped my lungs recover. I imagine a dry climate could be irritating in some ways, and maybe helpful in others, for all I know. It seems I've read that people in cooler, damper climates are more likely to get WG, but I don't know that there is any proof of that.