So everything was going well, I felt great and finally had been able to kick the prednisone to the curb after being on and off of it for 2 years. I was thrilled because anyone who’s been on the PRED for an extended period of time can tell you it’s a miracle drug and a curse rolled into one little pill.
Right before Thanksgiving last year I started feeling crappy, dry hacking cough, body aches and just overall gross. Went and saw my wonderful PCP, got a breathing treatment and scrip for an antibiotic and went on my way. By mid December I wasn’t getting any better in fact I was getting a lot worse. Shortness of breath, coughing like I’ve never coughed before and severely congested. Went back to the doc and got a nice big shot in the rear after a chest x-Ray revealed I had pneumonia. Started another heavy duty antibiotic STILL didn’t get any better. Talked to my PCP who told me to get my butt to the ER, I said NO WAY! It was Christmas time I had a ton of stuff going on and lots of mom duties for the school blah blah blah. Saw the GI doc for a follow up during this same time who also told me to go to the ER, again I said nope. I’m STUPID! Really really hard headed and I never learn.
Christmas Day, made it thru presents and feeding everyone lunch then BAM an elephant sat on my chest. That damn elephant made another hasty trip to the ER necessary.
5 days hospitalized -yuck! Thank God for my wonderful husband, son, mom, and in-laws! I’m blessed!
While in the hospital it was determined after OMG so many blood tests it was unreal. ( I have been tested for every virus, parasite and fungus known to man) BECAUSE the lung infiltrates from the Pneumonia were not going away. After being treated with boatloads of IV antibiotics, see since being diagnosed with Crohns I had been taking Immuran which is a immunosuppressant drug so it totally knocked out my immune system. THUS the pneumonia BUT the antibiotics still should have knocked it out.
SO, a theory is I have developed Crohn’s in my lungs. WHO KNEW? Apparently it’s very rare but does happen. SO yes finally, that is one reason for Mayo the other I can’t take the gold standard for Crohns which is the wonder drug Humira. You know that drug that you see umpteen million commercials for, I can’t take it. Because 1 the cancer history, Humira can cause more cancer and 2 it apparently can make the MS worse. 😢 SO the hope is the brilliant docs at Mayo can figure it out!
There you have it COMPLICATED.
I’m apparently a good candidate for stem cell therapy and that’s my prayer but HOLY MOLY its expensive and only has about a 30% chance of working. My prayer is that there is some kind of miracle drug in trials that I can be a Guinea Pig for, fingers crossed! BUT one things for sure I can’t stay on 40 mg of Predinose for the rest of my life, my face looks like a puffy pink pillow. AND I’m FAT I mean more FAT than normal. AND I’m vain! in another post I’ll give examples of the horrible things pred can do to you but for right now I’m only gonna complain about my appearance, I’m shallow like that 😉
If you’ve gotten this far, a big thank you for hanging in there. AND a favor if you have any friends, family or colleagues that suffer from one or more of my maladies-send them here. I’m gonna be in front of a gaggle of specialists. I’d be happy to get any questions answered, might as well put my insurance to the test!