Weggies & Work

[Sangye]

[QUOTE=Hopeful;24511]Hi Sangye,

Thanks for the input. They did tests and I did have pneumoniasis aureus (I think I've spelled it right).[QUOTE]
LOL-- I totally lost that bet!

My immunologist has treated 3 people that I know of - he has 2 offices and is in Canberra only 2 days a week, but is a Professor/researcher and is highly regarded. But I'm always on the lookout for someone better!

Oh, that is not good.... Please look for someone with more experience. The Wegs specialists see hundreds of Weggies.

[Sangye]

I don't know why that last post didn't do the quote right. I'm wiped out... super long day.

[pberggren1]

I notice other people have the same trouble most of the time.

[LisaMarie]

i am a nurse ...i was playing the misdiagnosis and they discovered trachostenosis in dec 2009...i was able to transfer of the med/sur/icu unit to a desk job working32hrs a week then in may got WG confirmed and now work 24-32 hours and have a great boss.....very fatigued but have 4 kids and a husband....three dogs which arw my other babies to care for....so at timez it is rough but i deal..i can not take pain meds cause they knock me out so I mediate nd deal....not sure how much longer i can do it ....so i guess with allof us it is different ....i did sleep all one weekend and felt a little better:biggrin1

[jola57]

Thanx JanW. I was on 15mg mtx but my rheumy took it down to 10 because of my liver behaving badly. My foot is worse when I put weight on it, but many times when I get to bed, there is no position that helps to stop the burning pain, it just goes away in about 1/2 hour. It doesn.t happen all the time. I have wanted physi but don't know how it would help if it is neural pain.

[JanW]

Is there some reason s/he won't put you on another drug like cellcept, Jola. My understand is that mtx is by far the hardest on the liver -- believe it or not, when it first came out docs used to require regular liver biopsies just to make sure it wasn't permanently damaging the liver (a doc said this at the conference).

Of course, if 10 mgs is actually controlling your symptoms, then good for you. My ankle continues to improve, and I believe that is through the combination of PT (which is getting back the range of motion that was severely restricted because of pain) and the mtx controlling inflammation. But I never believed my pain was neural.

[drz]

It could mean low potassium, calcium, magnesium. How often do the docs check your potassium level?

They check these frequents and give me calcium supplement, some vitamins and fosomax to prevent fractures. My levels are are usually borderline low.

[Sangye]

If they are borderline low, you should be taking supplements for them.

[elephant]

I agree with Sangye.

[woodsman1972]

I also work as an EMT in the health care field. Luckily I am a manager of a private ambulance transport service, so riding on the ambulance has been halted (I was only recently diagnosed and am still in the first couple of months of treatment). I can tolerate about 6 or 7 hours at work, then I hit a wall at about 3pm each day. Both feet swell up to the point of severe discomfort, and I have to get home to lie down. My bosses have been pretty understanding. Anybody else get the swelling of the legs/feet? My docs all say it just a side effect of Wegs. Want to know if it is something that will dissipate with successful treatment or if it can become a chronic problem.