How to know when you're having a flare

WOW Marilyn, I'm glad you found us.

I always say that WG is a sucky disease, but you certainly got given a good dose of it.
Keep looking through the search functions to help answer your questions.....or; just ask away. There are some very knowledgeable people on here.

I hope things are way better for you now ...... or at least under control.

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Originally Posted by Sangye

It can be really hard to tell. We thought I had pneumonia that was unresponsive to antibiotics or was just taking longer to clear up because of being immune-compromised, etc... It was a Wegs flare.

I have certain signs/symptoms that are indicative of Wegs activity for me. Do you have anything like that?

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It would be helpful to know what your signs and symptoms are. It might help others find what theirs are.

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Originally Posted by germaine

I was happily reducing my medication and was down to only 6 pred and nothing else, and guess what - no surprise except perhaps for my internest. He has now recommended a rheumatologist. What is the difference between to two of them. I asked my internest about milder preventative medication to just help with maintenance and he seemed reluctant to look at anything but proxytox which is a form of chemo. He claims it doesn't do me ANY harm at all? I have been put back at 50 mg proxytox and 30 mg pred. What a long trip back. I had an interesting progression of symptoms as I was withdrawing. First knee, shoulder and hand pain - nov. I did a bunch of physiotherapy and it seemed to resolve the problems within about a month except hand numbness? *I didn't know that was a problem?? In early dec after a further reduction in medication I had a most terrible day of dizziness, I could not walk, and had to be held up. Next day fine, except when I lay down at night, every night since then, I do my 15 sec spin. My hearing seems a little impaired too. after that increasing fatigue and finally the dreaded head/eyepain that was a precurser to me losing my vision a year ago, just in time for the New Year. I look at this and wonder how much is WG? How much is withdrawal. The upped meds immediately killed the pain, but the fatigue lingers. I am waiting for the change of doctors, so feel a little uneasy. Any ideas?

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I went blind for a year and none of the doctors new why. I had a fluid that filled my eyes until it finally glued my eye lids down. I finally saw a specialist who sent me to surgery after a year of being blind and they had to cut the eye lids open and what the found they said they had never seen. Most of my eye had been eaten and I had no membrane around my eye or on my eyelids so part of the problem was they had to find a way to remove my glued eyelids from my eyes without doing more damage. I ended up getting an eye transplant and new membrane which they took from my stomach. I now know how to keep this fluid ,sticky liquid from sticking my eye lids to my eyes but the membran disappears in a few months then it it constant work for me to keep gels and saline solution in my eyes at all times.In my third operation the membrane didn't come from me but from the amniotic sac of a new born. In a short while I will have to have new membrane put in again for the fourth time-This seems to have no relation as to whether I am taking meds or not It just happens. You just never know what to expect with WG.The strange things is that I have exactly all of the same symptoms you have., vision, tiredness, pain in knee ,shoulder and hands and today I started to have edema for the first time. head and eye pain and a lot of this lead to my blindness. My ophthalmologists said we will wait just a little longer before we operate to see if the pred helps at all. I trust him, next to my country doctor he has done more for me and been so accommodating to the other surgeons letting them get biopsies and things while he is operating so as not to put me through the trauma.. This is summer, in Spain and everyone is on holiday ,Doctors included,so it is hard to know when you can get an appt.. It is really best to wait until the middle of Sept.if you can I have had dizzy spells and arrhythmia, swollen joints; this is just not me I forgot how much I need to or want to eat when I am on Pred. I can't stop stuffing my face and all sweets. >Normally never eat sweets. I hope it is a phase the passes quickly.My hearing came back in my left ear after I fell off my horse no if the right one would cooperate I could hear properly. I asked me doc. if she felt my fall had anything to do with my vision, balance and head ache, problems and dizzyness. she said no but I don't know that I agree whit her. Could they just be side effects of the pred??

Good question. I am new to this whole WG. I see my Renal Dr every 2 weeks and have been doing good. Last week though started feeling bad again. I suppose this is a "flare". I have read some of the other post and I need to read more to become more familiar with the different aspects of this illness. I started coughing and my "old" Dr as of today just said I have a touch of bronchial issue and to use my "emergency" asthma inhaler. After reading some post about this tracheal stenosis I am wondering if this is some new manifestation. So I guess it is very important to know your body and what it going on with it. Hope you feel better soon. I myself am looking for a Dr that will pay attention to my needs and not just put me into the same category as the normal person with "normal" systems should behave.

How high should your creatine level get before it is considered dangerous? Mine is at 4.9. I know that is high but I heard the 10 is high in an adult.

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Originally Posted by Barbara N

How high should your creatine level get before it is considered dangerous? Mine is at 4.9. I know that is high but I heard the 10 is high in an adult.

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Mine was 1.54 and that is too high but not bad for someone with 50% kidney function. Normal healthy people run 1.3 or less on the system my labs used around here.

4.5 is way too high. You need to see your doc right away about that Barbara.

[QUOTE=drz;71069]Mine was 1.54 and that is too high but not bad for someone with 50% kidney function. Normal healthy people run 1.3 or less on the system my labs used around h I HAVE LE

I have more than 50 % kidney dysfunction, could this be dangerous? Plus I have been flaring the last few weeks. I am back on pred though.

I see my kidney doctor next month very srtange for doctors not to have vacation. It might mean that they are better that the others and like to have the holiday when all of the kids have gone back to school.

I t seems to me that there are so many novices here that don't understand all of your abbreviations and words for medication that maybe we should make and easy to use and read chart with all of the important levels to look out for, what is normal, what is too high and when should you get to the hospital. and a way to keep track of whjat we have taken and when. Does anyone out there have any good graphic skill. It would help when we go to see the Dr. as well. Maybe Alysia could do it, she sems great at that sort of project as she has studied it so much.