Wegeners disease in Remission.

[Col 23]

Jan and Sangye, I find this interesting as Im having flare at the moment, that they up the pred instead of the methotrexate. Yes I have disappointment but I suppose thats just trying to maintain positivity that I will eventually get of meds however I am a realist and the doc put it plain and simple last week that " you will die if you dont take the meds". Thanks to this group I have more of an understanding that when your having a flare the damage it can cause.
Col 23

[Sangye]

Col, when my lungs started hemorrhaging last summer, I thought for sure my Wegs doc would put me on massive pred again. Instead, he put me on ctx (and later rtx when the ctx failed) and only put me on 4mg pred. Alveolar hemorrhage is considered a severe flare. That was a great example of how the Wegs specialists have learned how to adjust the main immunosuppressant vs increasing the pred.

If the hemorrhaging had gotten much worse, though, we would have had to increase the pred to stop it until the ctx/rtx could kick in. That's the second lession: treat a flare as soon as possible and you can avoid higher doses of pred.

[JanW]

I really can't speak as well to it as Sangye has because I am not debilitated by these disease - though I know that my SED, CRP and P3 values are tons higher than some people here who are clinically much worse. I do know that my doc would add judiciously to the mtx rather than even starting me on pred if he could avoid it. He feels that the tempo of my disease, as he calls it, doesn't require the rapid response of pred.

[pberggren1]

My Rheumy told me not to go off of the Alendronate especially if I am to go on the Rituxan as I will have to go on much higher pred.

[Col 23]

Thanks heaps for the responses, I think I will question this next week when I get the bloods back again with the doc. However I have to say 3 days into an extra 5mg of pred has just started to help with the extreme fatigue but does not appear to have settled other symptoms as yet. Only pain killers take the edge off but not the back pain.
cheers Col 23

[survivor]

I am trying to catch up with the messages. I see you are impressed how seriously your doctors take any new symptom in your body; I feel the same way about my physician. He insists I see him whenever something different appears: a cold, a lump, even a small cut. He is the head of a whole floor in a Montevideo hospital, and everyday he carries his round of patients. While he is doing this he does not want to be disturbed. And to get an appointment in his practice usually takes one and a half month. However, he told me that if some new symptom appears I should go to the hospital, when he is doing his rounds! Yes, JanW, he cares. Do you live in the US?

[survivor]

Hey people, this is the odd man out of the group writing from Uruguay. I want to share with you the news that today I had the results of my last blood and urine tests. No proteinuria (how do you say this word in English?) and a very low and acceptable rate of creatininemia (how do you say this word in English?). I was worried, because I caught a cold and a nasty cough (it's winter in the Southern Hemisphere now), but I was told that both problems were of no significance, and it was not necessary to use medication. I consulted with Dr. Cairoli (not my primary doctor, but a friend of mine), who is an especialist in autoimmune deseases, and he said that if I were his patient he would declare me in complete remission. But I'll wait for my doctor's opinion; if it is the same as Dr. Cairoli's then I'll buy the fireworks.

[elephant]

Hi survivor, creatininemia is creatinine and proteinuria is protein. Thanks for keeping us posted. Sounds like you doing good.

[JanW]

Yes, I live in the US, survivor. Right outside of Manhattan.

[Sangye]

Survivor, that's great. Proteinuria means protein in the urine. Creatininemia means elevated creatinine in the blood. Your terms are the same as the medical terms used in the US.