hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?
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hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?
I think that in general, you know about it when some of your original symptoms start coming back. For others (by no means all!) their blood results start to creep out of their new normal range.
In my own case, the state of my sinuses is a good indicator and this was also the first symtom I had when developing Wegener's. However, renal problems can creep up on you with little in the way of symptoms, so you need blood results too.
Hi Summer! As Jack said, usually it's when your original symptoms start creeping back. You can also have a flare and not know it, like me :) Apparently accoring to my blood tests, I was having a flare (high ANCA) but I didn't feel any different, a bit tired maybe but that could have been anything. Goes to show that you need to keep up with regular checkups and stay in touch with what your body is telling you.
Do you think you're flaring now?
You don't note how often you are seeing any doctors about this disease or which specialties they represent. I'll look for your earlier postings to see if those questions are answered. Regardless, flares tend to come once you've been moved to lower doses of the primary drugs your doctor's using to bring your immune system into control. Jack and Andrew's responses, too, offer you excellent direction on this question. If your doctor sees you monthly, he/she probably sees blood and urine test results frequently enough to form a sense of trends in your measurables and whether they represent improvement or concern. If, between your regular visits, you experience symptoms, you may want to give your doctor a call, at least, to give him/her a chance to evaluate your concerns about a possible flare. This is a potentially fatal disease, so your doctor should understand if you have a few false alarms until you zoom in on how your body feels and understand better what the creatinine numbers mean, for example, or why you should be concerned about blood in sputum, nasal discharges, or, um, well, etc.! Hang in there! Maintain your positive attitude, and remember this is your forum to use for questions, concerns, frustrations, and joys: we all care because we've been where you are!Quote:
Originally Posted by sumsum5587
Is Greensville close to Greensboro?
I go to the doc once a month here and then labs once a month. and they fax my labs to the Cleveland Clinic in Ohio every month. I found out i had wegeners in march. they put me on cytoxin and pred. i was having a real hard time. my kidneys started to fail so they had to put me on dialisis. i spent about a month and a half in the hospital that time then got to go home for about a week and ended back in the hospital because i was having sicuers. they kept me for 1 week that time then sent me back home. then about two or three weeks later i was back with phumonua for a little over a week and in between all that they took me off the cytoxin for about 2 weeks cause my hemo. level dropped. they keep having to give me blood. then they sent me to Ohio to the Cleveland Clinic to see if wegeners was in my head and it is. so they took me off of cytoxin and put me methotrexate i take it in pill form... all in one day... thursday was my 4th week on it.... but it seems to make me feel bad for about 4 days after i take it.. is that normal? and does everybody else hurt often and alot? and just feel weird..? and also my nose bleeds and hurts everyday.. is that normal and i cant get rid of my headaches for the past few days...?? any advice??
Sounds like you're having a bad time of it and it is not under control yet. It can take a long time to get the medication you require just right and even then, things change.
In my own case, the nose bleeds stopped once I had been diagnosed and recieved my first, very heavy doses of medication. As for pain - yes, all the time, but mine is the result of long term medication. For most of my time with Wegener's (after treatment), pain has not been too much of an issue.
From what you say, you are taking your Methotrexate in pulse form. I did not get along at all well with this method. It failed to keep things under control and made me feel bad. I would ask about taking it daily instead. How much prednisolone are you taking?
I'm so sorry about what you've been going through, and I'm very happy to know that your docs are working with CC Weg's experts. I'm surprised that they took you off cytoxan when Wegs was causing seizures. Usually they put you back on it if Wegs affects your brain. But clearly the CC docs have good reason-- maybe it was too strong for you.
First, given that you already have Wegs in the brain, please call your doc ASAP about the headaches. That's often a sign of trouble.
We all react to the drugs differently. A lot depends on your Wegs and the shape your liver is in-- how well it can handle some of these drugs. Other variables are hard to figure out.
Pain and feeling weird are common. It can get better, but in your case it probably will take awhile. You've been through a lot and the Wegs is not under control from your description.
Take it one day at a time right now. Don't project too far into the future, thinking you're always going to feel this way. With Wegs, the one thing you can count on is that everything changes. :)
there cutting it down by 5 mg week. im at 40 now
thank yall so much!! i'll be in touch..