I'm New - Limited Wegener's Disease

[Brooke]

Thanks- I have been to Mayo Clinic in Minnesota, I saw a pulmonologist there, I don't know if she is a wg specialist or not. That is about 4 hours from where I live. The doc at Mayo is letting my pulmonologist in my home town monitor me since he knows my history and is closer. Is there a Weg specialist near South Dakota?
Do they only put you on the cytoxan if your kidneys are involed? I am just on methotrexate and oral steroids and pholic acid and bactrim and zoloft for anxiety I get from the steroids. I thought they only put you on cytoxan if wegs has afffected you severly, like life threatening at that time?
Does anyone's ears constatly have a high pitch buzzing? Kind of like when you leave a tv on but the volume is down, you can hear that noise? That is what I have all the time. Could that be from my sinus rinses? Or is that a Wegener's Symptom? For those of you with eye or hearing involvement, does that get better?
I also have 2 symmetrical round bumps under the tops of my eyelids. I saw an eyelid specialist (yes they have an eyelid specialist, haha), he said it was scarring from wearing my contacts so much and I also used to get sties in my eyes as a teenager.

[Jack]

The noises in your ears are due to tinnitus, it is very common with all Wegs patients but also mentioned as a side effect of some drugs.

[elephant]

Brooke when I was 16 I had a blood clot. My left lower calf was swollen and hard to walk on. Being in denial and not knowing I walked on it for months, it could of killed me. I went to see my rheumatologist ( at that time they didn't have a clue I had wegeners) I mentioned my swollen leg and immediatly was placed in the hospital with IV heparin drip for a week. Then coumadin for 6 months. Wegeners disease effects you head to toe. At first the rheumatologist thought I had limited, but then looking back 30 years it is all over. Wegeners can change from limited to all over head to toe. Why even label it Limited, you never know. Like I said before it is a wicked and sneaky like a two year old eating a cookie.

[deb]

Hi Brooke.

I agree with everyone else about limited being a term of very little meaning for us. Wegs affects you systemically. I do not have a good answer as to why I got injections instead of oral. I assume it was because of how sick I was at the time. The idea was that I would be able to perhaps move to the oral later. I was deathly afraid of shot. Other than the dentist and when having my children under anesthetic, I had not had a shot (IV and taking blood is not the same for some reason) in 40+ years. It would not have been my choice. After seeing so many on oral Methotrexate having issues, I do not want to go there and have gotten pretty okay with the shots. Maybe my husband is just better at giving them to me now.

The Ritux is short for the longer name. It is a drug recently approved for us. I think it will replace my predizone. Sangye is the expert here and started on it recently. I will let her tell you more or you can check the threads as there are several talking about it. I am hopeful so I can get off these steroids I have been on for 18 months. I am so tired of looking like a pumpkin. The prednizone seems to have reacted differently after my last flare. I really ballooned everywhere a lot more than usual.

Keep asking questions and reading past posts. It took me a while to find the list of threads but I am still combing them for information. I keep my 9 month old granddaughter (our first) and do not get to devote much time to reading these days, but oh the fun I am having!

[Jack]

I'm afraid that Rituximab is a B cell killer rather than an anti inflamatory so is not a replacement for prednisolone. It will be a great day when they find a substitute for that one with no side effects!

[Sangye]

Jack, that's true, but my Wegs doc referred to rtx as a "prednisone-sparing" drug. Meaning it's so effective they can use lower doses of pred than with cytoxan.

[Sangye]

Deb, LOL I'm no expert on ritux, but I do have a decent understanding of it thanks to my Wegs doc.

I went to the pool today to do some exercise. I was feeling stronger and decided to try a few swimming strokes. I was able to do it! If I'd had goggles, I could have done more! They're packed somewhere (I used to be a swimmer), but I can dig them out. This was a huge step forward. Score one for Rituxan!

[elephant]

Good Sangye! Sounds like your moving in the right direction. So good to hear this!

[firecracker]

I have what they say is limited wegeners. I also am concerned that the mtx wont work for you. I was feeling better before I took it. I felt worse when I did. I was sick to my stomach longer and longer as I took it and when I stopped it, i felt better but as they all say.. feeling better is really not the sign. its the time after you feel better then start feeling pain and more pain then the bleeding starts from the nose again and i got so bad. you should see how swelled up my face is. mtx works for some. and i hope it does for you. here i go about to start imuran. i hope it works. something has to. i can see the destruction. more of it that has happened recently. although i may have some skin issues or not, not sure. i know everything takes forever to heal. the prednisone hike up does help the pain but it doesnt stop what is causing it. i hope for you, the mtx does. make sure they are doing lung scans frequently to make sure your lungs are ok. def use the saline rinses. also, my ent put me on a nebulizer and that really helped a lot. i have three meds for it. betamethasone, tobramycin, and intraconazole. being on these immune suppressants, you need to make sure you are not getting bacteria and fungus/mold that is all over the place in the inflammed tissue or whatever is left in your nose. so mainly i use the beta one but i do use the rest of them here and there.

[Jack]

Jack, that's true, but my Wegs doc referred to rtx as a "prednisone-sparing" drug. Meaning it's so effective they can use lower doses of pred than with cytoxan.

That sounds like a worthwhile effect that I did not know.

Treat yourself to a new pair of goggles!