Flare/remission question

[snooz23]

I am also on the metho. and pred. at this point. It is my understanding I do have a "milder" form of Wegs, however it has taken away my hearing, and I do have nodules on my lungs. I am also short of breath, chest tightness and overall feeling crappy. Teetering between infection, damage, side effects....it is always just so much to take. Just like I said before it is just amazing how each day presents a whole new batch of bad to replace the couple of goods that may have happened the day before. I am just in this treatment phase a couple months so I know I need to have patience and I also think about switching medications? However, I do see Dr. Langford in Cleveland and I know she is one of the best, so I definitely have trust in the fact she is doing what she does best and I am always in contact w/ them. I have not heard of remission taking 3-5 years so that is a little disappointing....I do know you may remit and then end up back w/ active disease in that amount of time....I am hoping they may be some level of remission before then.

[Sangye]

Snooz, when do you see Dr Langford again?

How long have you been on the mtx? It takes about a month to fully kick in-- same as all the immunosuppressants. So if you've been on it for 2 months, it's only really been working for 1 month.

[Jack]

I had flares for about the first 5 years. They seemed to stop when I switched to Mycophenolate so it might just be a case of finding the right drug.

[elephant]

Hi Snooz23, I also see Dr Langford. I drive 10 hours to see her. I have a rheumy in town that corresponds with her too. You are lucky that you live in Ohio and being so close to a great hospital! Like Jack said it may take another drug to reduce the flares. If you have been on Methotrexate for two months, you need to give it some time. If you start to feel really bad ( flu like symptoms that don't go away or worsening flares ) call the doc. I had flu like symptoms from Imuran ( drug reaction), so they put me on Cellcept 2000 mg. Anyways, I think your in good hands. She always tells me call if you have any questions.

[DuaneHart]

Hi Lisa
Sorry but I don't now anything about Eric Moore. We'll have to keep in touch about Dec 2. I work that day at 6pm so maybe we could meet downtown near Mayo after your appointment and before I go to work?

[berylj]

just read the recent posts,im just recovering from my 1st ever flare!seems i will have to stay on azathioprine to keep stable,ive now realised what a 'normal' life means with wg!also curious about these nasal treatments,ive not heard of it before,maybe ive been lucky,apart from a runny nose i am trying to stop looking in my tissue
everytime i wipe it tho! get funny looks!
had a recent visit to vasculitis clinic and nurse told me that in 3yrs patient nos have
doubled hopefully due to gps becoming more aware of wg,on average patients have
seen 5 docs before being refered to them, on my 1st visit to a new gp after moving
house she had to look up wg on the net! thats one more who is now aware of wg!
berylj

[elephant]

Hi Berylg, I use the sinus rinse to prevent sinus infections and to clear the mucus out. I have severe damage in my Maxillary. Four sinus surgery even removed bone from my maxillary. You can buy the sinus rinse at any CVS,walgreens or any pharmacy really. I love it. It has kept my sinuses clean. Squeaky clean.

[Sangye]

Berylj,
Those are really interesting numbers about Wegs cases. Thanks for posting them. Which vasculitis center do you go to?

[snooz23]

Sangye...I see Dr. Langford again at the end of Dec. I see them every month...yes I am lucky I only have to drive 2.5 hrs. each way to see one of the country's top notch wegs specialist. I am very happy about this. By that point I will have been on the metho./pred. combination for a little over 3 months, so I guess they will weigh it at that time.

[Sangye]

Snooz, I think it's worth an email or phone call to ask if it's normal to have the shortness of breath and chest tightness--if it needs attention sooner or if it can wait until your next appt. I do this with my 2 main Wegs docs and they're always happy to know. Sometimes they say it can wait and sometimes they say "Come now."