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katarzena
05-11-2010, 05:58 AM
Did any of you had them?
It happened to me once again last night and woke me up. It hurts so badly but lasts 'only' about a minute. After that, next morning, my muscle hurts the whole day.
I was wondering should I tell my doc about it, but I've searched it an read that prednisone does cause it.
Hopefully it won't happen again after I'm on lower doses next month. :/

elephant
05-11-2010, 07:23 AM
I would, if they bother you go ahead and give your doctor a call. It can mean many things....prednisone, low potassium, low magnesium, sometimes it's a sign of blood clot, and the list goes on.

jola57
05-13-2010, 01:14 AM
Its part and parcel of the diseases and recovery, they will eventually go away but do mention to your doc since as above there are many reasons why they cramp and should not be ignored

ArlaMo
05-13-2010, 02:40 AM
I've been having them at night lately. Sometimes, they get bad enough, I have to stand up to get them to stop. I'll definitely be asking the doc about them next visit. And yes, my calves hurt the next day.

elephant
05-13-2010, 04:31 AM
Arla, how is your kidney function? Creatinine? Are you checking your urine frequently with dip sticks? I had a kidney transplant, so just keeping an eye out for you. I had wegeners for over 30 years, docs didn't know I had this until 2008! Long story...

ArlaMo
05-13-2010, 04:37 AM
Creatinine was 1.6 two weeks ago (normal for my age is .7, .8 so says hubby) but it came down to 1.3 with last Thursday's labs. Still have protein and blood in the U/A. Trying to get into a nephrologist here in town. Michael (hubby) really likes him, but it is a small town and he's booked through August. I'm on the wait list to get any cancelled appointment. He's the only one close by.

elephant
05-13-2010, 06:21 AM
You really need to get to a Nephrologist real soon. If a Wegener's specialist saw you right now they would have you see one " Today." Really! That is how it is when you see a Wegener's specialist, they order stuff stat! Cause this disease does not wait! Normal Creatinine is 1.0. Variation of course is ( 0.7-1.2).
I know this is so overwhelming, but need to call a Wegeners specialist tomorrow and find a kidney ( nephrologist) tomorrow too. Sorry, but having blood and protein in the urine is not good. Thank goodness you are on Cytoxan and prednisone, that will help...but still need to monitored very closely.

jola57
05-13-2010, 05:19 PM
ArlaMo, do not wait. We all know from experience - regular docs know very little if anything about this disease. When they read about it or even if they treat a few patients, they still do not understand the way this disease can be very silent and do a lot of irreperable damage. I do not have a specialist because there isn't one anywhere around, I have a rheumy who knows some but is not a specialis and it is a hit and miss. I think that Seattle has a specialist and it really would be to your benefit to call and find out. Protein and blood in urine is no good at all, please see the nephrologistand at lest this time do a "professional courtesy" early appointment. This is your wellbeing we are talking about.