fairly new member

[peachyhugsgina]

Elephant
I sure hope the mtx works too.. really don't want to be on the cytotoxan if I dont have to be. I am not on prednisone at this time.. she opted to not put me on pred, as I have quite a bit of bone loss.. not osteoporotic yet, but close. I had reclast IV in Nov.. so we will see what that got me as far as bones. I am also on 200 mg plaquenil twice a day for the lupus, and amytryptiline to help me sleep when the fibro causes me to have insomnia..
Tahnks
Gina

[Jack]

If your doc thinks your condition warrants ctx I'm very surprised that you are not also being prescribed steroids. Loss of bone density is not a reason to hold back, if you need them, you need them and that is that. I have severe osteoporosis (I max out on the rating scale!), but can't get by without 10 mg of pred. I would if I could!

[peachyhugsgina]

I saw my pcp today, and related what the rheumatologist told me at my last visit. She isn't sure I have wegeners and she isn't so sure that I don't. She wants to follow me closely for a few more months. She restarted the mtx about a month ago at .3cc weekly, and drew lab work yesterday, and increased me up to .4cc.. not sure how long I will be on this day. My pcp wants me to ask the rheumatologist to refer me to the Wegs specialist at UAB, but if she won't for some reason, then my pcp will give me the referral I need in able to be seen . I am hoping that I can take along a friend when I go, get a hotel room, spend the night, and drive back the next day.. it is about a 3 hour drive one way for me, and with the other autoimmune disorders, I am sure I am going to be very tired just making the trip one way. I am not on prednisone at this point, She is still increasing the mtx , but more slowly this time due to the severe infection I had about 5 weeks ago now.. I am still very wheezy on the right side, according to the pcp today, and she wants me to continue using the inhalers, and when at home, the nebulizer a few times a day for awhile at least. I will get more labs in March. I see my rheumatologist again next week, and will get the results of the labs she drew yesterday .
Take care
Peachy hugs,
Gina

[Sangye]

Gina, Please just get to the Wegs doc any way you can as soon as you can. There's no way this PCP can diagnose and treat Wegs.

[JanW]

Gina -- I also hope someone is monitoring your liver function closely with taking mtx because I never even made it to a therapeutic dose before the doctor stopped me due to increased liver enzymes -- I had no noticeable physical side effects whatsoever.

[elephant]

Gina, I don't mean to be a nagger or poop face....but you still have wheezing. That alone concerns me. You really need to be in sooner. Like the rest of the crew on this forum methotrexate can be toxic to the liver and lungs ( infiltrates). I just hate to see you go down hill fast......I understand that you are not feeling well and it can be so overwhelming! I have a dirty little secret....I WAITED To long to see a Specialist!!!!! Diagnosed in July 2008 and finally saw one on Oct 2009! Thank goodness my local Rheumy called the specialist I see now March 2009. So in retrospect I feel so stupid that I waited too long....because I'm a RN....Don't tell anyone...

[JanW]

elephant: I think there are many stories where people feel as though they waited too long. I first saw the words "Wegener's Granulomatosis" in May 2009 in a CT scan report, and yet didn't push my pulmo when she said I don't really think you have it...I never followed up with a rheumotologist on my own to get a definite rule-in/rule out diagnosis. It was only when my foot didn't heal -- and a second set of preliminary bloods showed a clearly rising SED, CR-P and RA factor rate, that I knew I had to get in to a rheumy right away -- luckily for me being in NYC, I was able to see someone who specializes in vasculides at a teaching hospital. One week late, definite diagnosis of Wegs. Six months and one saddle nose deformity later.

[Sangye]

Your secret is safe with me. Hey, I waited ONE YEAR to see a medical doctor to even diagnose the Wegs. I wouldn't even go to one for a physical. It was a big ego thing for me, thinking holistic medicine was all I ever needed unless I broke something or needed emergency surgery.

This is what makes good nags, though. We try to keep everyone from going off the same cliffs we did.

[peachyhugsgina]

Thanks for all of your responses. I am concerned that she is hearing wheezing on my right side still.. I have a cough that won't go away, although no fever, or other sign of infection at this time. I do, however, keep coughing up some really thick white phlegm from time to time.. is this enough to warrant concern with my anti proteinase 3 being elevated, and the other symptoms, plus having had the severe asthmatic bronchial infection less than 3 weeks ago. I am sure that between the hematologist, the rheumatologist and my pcp, that my liver functions are being tested on a regular basis.. that is part of the profile that the hematologist tests every 2 months. I am not sure what the rhuematologist is drawing.. some panels, and a Vit D level I was told. I am seeing my rheumy this Thursday and will request a referral to Dr Fessler at UAB.
Take care
Peachy hugs,
Gina

[Sangye]

Those symptoms are definitely concerning, Gina. The absence of symptoms that indicate infection is always alarming for a Weggie. Glad you're headed for UAB.