Update: Saw the doc this morning!

[mrtmeo]

I just got most of the bloodwork back and my ALT enzyme is through the roof. Has anyone had their Wegener's turn its attention on the liver? I am sure this is a fluke test and if I do it again it will be normal but it is worrisome to me, given that two weeks ago it was OK. I don't think it could go that bad that quickly right?
I was in a lot of pain last night. Shoulder, elbows, wrists, ankles, and knees were in agony and I have no idea why. It felt like I had been on a HUGE hike when really I went to the doctor, rested and then came to work where I sit. Not sure what to attribute that to.

Isn't this disease grand?

I found this clinical cases discussing mofetil and kidney transplants where a 14 year old with weg's had a rising ALT that made them take him off of the mtx because it was causing it here

Mycophenolate Mofetil-Related Enterocolitis and Weight Loss: A Pediatric Case Series
"Case 3. A 14-year-old male with Wegener’s Granulomatosis was diagnosed at 8 years of age after presenting with pulmonary hemorrhage. At that time, he underwent percutaneous renal biopsy, which showed pauci-immune sclerosing crescentic glomerulonephritis, consistent with Wegener’s Granulomatosis. He was also found to be p-ANCA positive. The patient was initially treated with methotrexate for the first three years after diagnosis, but due to rising aminotransferase levels, methotrexate was transitioned to azathioprine. Aminotransferase levels improved but did not normalize on low dose azathioprine, so the patient was ultimately transitioned to MMF."

[NikkiNicole]

Thank you for the info. I'm not going to worry until after we retest. I don't think the short term use of MTX (this round was October to now) could cause such a spike. It was waaaaaaaaaay normal two weeks ago and now it is waaaaaaaaaaay not. But, I am no doctor.

[mrtmeo]

Yes, if it is way higher than 2 weeks ago, it must be an anomaly.
Keep us updated when u find out.
Are you doing any better, yet?

[NikkiNicole]

No. I'm not well. I still have a headache. My joints are ANGRY!!! I am uncomfortable and just want to go home and lie down. I just cancelled plans with a friend for the morning so that I can sleep some more. I may have to call out of work tomorrow if I feel worse. I don't know if I can drag myself in for another night of this.

[mrtmeo]

Have u tried the ibuprofen for the headaches?
That is an immune suppressor.

[NikkiNicole]

I hadn't taken it for so long because the pharmacist told me not to. Little did I know that he thought I was taking a MUCH larger dose so he was warning me against it. So I've been muddling through with aches/pains/headaches for months. I am in agony again right now. My shoulder, my elbows, my wrists, a couple fingers, my knees, my ankles and my neck is throbbing. I haven't done anything to cause this!!! 3 hours of work to go.
I plan on sleeping tomorrow. Hopefully I'll sleep for awhile. I'll measure how I feel when I get up and then I might have to miss work. Things are just getting progressively worse tonight.

[mrtmeo]

Something is not right.
I hope they give you something to stop the disease process soon.

[NikkiNicole]

Update: still sick!
I didn't take my MTX this week and I am still feeling awful. My head is killing me ... still. My top back teeth hurt, I feel like I ran a marathon again. I am so tired of this. Words cannot describe how tired of this I am.

[Debbie C]

Note: The article mrtmeo linked was for fibromyalgia patients with a vitamin D deficiency. Vitamin D is one of the few vitamins you can actually overdose on. If you take vitamin D supplements then you should have your vitamin D levels checked with regular blood work.

You may not be able to overdose on them but to many can put you in a toxic level. So you diffenently need checked for that espcially since its always sunny were you live .

[NikkiNicole]

My vitamin D test came back just fine, more on the low side but still within range. I do spend a lot of time indoors but I am also outside a lot.