I was on it for awhile.......it put me in menopause, but I don't think that will be an issue for you. Lol. It also made my hair thin out a lot, I ended up shaving it down for awhile. It didn't make me slightly nauseated at first, but I just split the dose and I was fine. It didn't do anything for me but I hope it works for you,

Peace love and joy
Beth

What was in your lungs?

They have biopsied them twice in a year. At one point they said I had interstitial lung disease, then it cleared up. They find nothing but inflammation / no name. I have had lung function test scheduled and did well and the next day im in the hospital without the ability to do a 6 minute walk without my pulse oxygen going below 85. IDK whats wrong, but now the rhumy who told me it was going better says its life threatening. My sed rate is over 130 and I have to watch fluid constantly because it is collecting in my chest lungs and heart sack and not as visual in my joints although they still hurt.

Little balls of sh*t. What's your typical dose of prednisone? 20 seems like medium high... I think the most I ever took was about 30, and not for long.

Don't know a thing about the Cytoxan, except what I read on the internet. Hating the name.

Very funny, Beth!

Post back and let us know how it goes, sending positive thoughts your way...

I'm going back on trimaclone acetonide .1% dental paste for the swelling in my throat. Trying to catch it early this time... that stuff drips down your throat, it really feels like prednisone, except the dosage seems way more inexact. Any doctor who thinks this is just an external steroid is kidding themselves. It feels like about 10-15 mg.

@ I was on 80 mg pred for almost a year. plus cellcept

I saw my pulmonologist (lung doctor) He is afraid jumping to Cytoxan is a dangerous jump with no other diagnosis than MCTD. He wants to do a dual biopsy while I am in the high point of my flare. My sed rate is is above 130 and it will be dangerous. They have done nasal lung biopsy but he wants a lot more sample. I currently have fluid on my lungs, heart sack and he said my lymph nodes are very swollen but blood work shows no signs of a cancer or anything else. I saw him today and he was supposed to call my rhumy and decide, I avent heard anything and I am scheduled for the cytoxan on the 5th. Sorry my dark sense of humor is lacking. Dealing with this level of pain and inability has made it hard for me to even post while others with the same disease are running marathons and exercising (which im glad for them) but I am not so fortunate. I have suffered with joint pain, random cases of pneumonia for 12 years yet was still a machine who helped anyone who needed it and Supported my family every waking hour they would let me work. Now in the last 2.5 years i have been reduced to a painful mass who doesnt want to talk to anyone about it because they could never understand. If I had to guess at this point I will die drowning in my lung fluid coughing and suffering till the end and having my family have to watch.
Robert

And thanks again for all your support
Robert

Today C reactive protein came back as 160 where normal range is .2 to 5.o. I don't know what it means but meet surgeon monday and hopefully the full biopsy next week.

Robert,

I'm thinking about you and wishing for the right words -- but there aren't any. I hope they figure out what's wrong and can fix it, and that you and your family don't have to keep dealing with this s***t.