Greetings

[renidrag]

Welcome Debra and all the others I haven't spoken to. I don't get on too often and also don't post often. Diagnosed 8/09 and drug free remission since 6/10. Keeping a good eye on the body with quarterly blood and visits. Good days and bad days. I would not worry about reaction to the drugs, I was on ctx for four months too long because I could not handle the Imuran, but there are others now and most people I have read about here have taken Imuran without a problem. Good Luck, you could not be in a better place for knowledge and understanding.
Dale



oops, forgot to change the avatar.

[RudiK]

Welcome to the group Jim and Debra, this is the best forum there is for WG patients. My history is very simular to yours. Was diagnosed in April 2011, was given Ctx, Pred, Gabapentin and several other drugs, went into remission in Oct 2011, and I'm now on Imuran, low dosage Pred, still on Gabapentin and several other meds. My body responded well to the meds with very few side effects. My primary doc is a Nephrologist in a group of Kidney specialists. The group has treated most of the local WG patients in El Paso. So far so good. Good luck to you and I hope you achieve your goals.

[Debbie C]

Well last nite was the first time I took Imuran (50 mg.) I slept good but woke up shaky. I had to take part of an anxiety pill to try to calm down before I took my 2 prednisone pills (5 mg. each ) I hate this crap....I live in Ohio and I moved away for 25 yrs. I moved back home after my father passed to help my mother and I have never been sick until I moved back here. And I hate taking medicine that makes u feel worse than the disease. Has anyone had any really bad experiences with Imuran. What do I have to look forward to?

[Debbie C]

hey renidrag....what drugs were u on that you are now in remission? Good for u I hope u stay well !!!

[Al]

Well last nite was the first time I took Imuran (50 mg.) I slept good but woke up shaky. I had to take part of an anxiety pill to try to calm down before I took my 2 prednisone pills (5 mg. each ) I hate this crap....I live in Ohio and I moved away for 25 yrs. I moved back home after my father passed to help my mother and I have never been sick until I moved back here. And I hate taking medicine that makes u feel worse than the disease. Has anyone had any really bad experiences with Imuran. What do I have to look forward to?

All our drugs are "crap", Debra--but necessary, as no one knows anything better to do than put up with the crap. But sometimes there are alternatives. Imuran (azathioprine) is often hard on digestion (I sometimes get nauseous from smelling or thinking about certain foods), When it is not tolerated, CellCept is the next drug on the list. It has its own drawbacks for some people, but usually is well-tolerated. Insurers don't like it, because it is expensive--but they'll come around.

Al

[Sangye]

Hi Debra, welcome to the group! I'm worried that you have serious enough involvement to warrant ctx and rtx, but that you're only on imuran. Imuran is not strong enough to put Wegs into remission. It's very important to see a rheumatologist who specializes in Wegs. Fortunately for you, Cleveland Clinic has a world-famous Vasculitis Center. I suggest you connect with them for your care.

[Debbie C]

Hey Sangye....I see 2 rheumys from Cleveland Clinic...the one I just started seeing..he has a office down close to where I live,but he only comes down twice a month and he is always booked up. And I'm not to sure about him yet. The other one is very good but I don't always have a way to get to Cleveland. He had me take a rituxan infusions ( I was supposed to take 2) but the place that did it...here in town never did a rituxan infusion before and they gave it to me too fast and I had a bad reaction from that and they said if they gave me another there would be a chance I could die from it and my rheumy wouldn't let me have another....but it did take away some of the nodules I had in my lungs. I just have to wait and see what this doc. does when I go see him again and then I may go get a second opinion from the one at the clinic.

[Sangye]

Are the CC doctors vasculitis specialists or just regular rheumy's?

That stinks about the rtx infusion but there might still be a way for you to have it in the future. I suggest you only have infusions done at major hospital infusion clinics, where they know how to do them properly. I get mine done at JHU ( 2 hrs drive each way). The nurses there have told me a lot of horror stories about other facilities.

[Debbie C]

What are the symptoms when you first get saddlenose ?? I don't know if it's my sinuses or what. But my nose has been very dry so I put a nasal cream inside for moisture,next thing I know is I have a small hole on the inside on the bridge of my nose !!! I go see my ent tomorrow so I'll find out then but just curious. Got my blood work back and every looked good except my Vit D level was 102-toxic,so my dr. at the CC told me to stop taking it......after I saw the results on my own I quit but it was nice for him to tell me !! I go Monday to see him and I know he's gonna be mad about the Cellcept (me not taking it ) but that was 3 months of good bloodwork without being on it. Just hope my nose is O.K. I have a feeling he's gonna put me on something else though.I don't know if it's a flare or not but I keep getting hot flashes like having PMS....too late for that though.
I was out raking leaves today and thought of a good theme song of our condition..anyone remember that song.."Who let the dogs out..who..who.. !!

O.K. I think I'm getting dalirious (sp?) from being so hot going to take a shower

[annekat]

Debra, I didn't have any symptoms that I could relate directly to getting the saddlenose, just noticed it one day. I'm having trouble visualizing the hole on the inside of the bridge of your nose. Can you see it from the outside, or do you have to look way in there? The hole in my septum, which caused the saddlenose, is way up in the bony part where it's hard to see and my ENT needed to probe a lot in order to find it, and he said it was small. But it was big enough to cause the cartilage to lose its support at the point of attachment, if i understand it correctly. Anyway, your hole sounds a bit mysterious and I hope your ENT is able to shed light on it tomorrow.