• Katkan Katkan
    March 11, 2010
    Recurring pneumonia and steroid withdrawal?
    Katkan Katkan
    March 11, 2010

    Hi Peeps, anyone ever had problems with recurring pneumonia? Several different doctors have prescribed prednisone with antibiotics since last March. Now, along with the pneumonia, I have adrenal exhaustion and am on a 2.5 mg taper. I started at 60 mgs. I can't get past 20 mgs of prednisone without the symptoms coming back, along with some other steroid-related withdrawal problems. I also have the VEST, a vibrating inflated thing that's supposed to move mucus. YUK! They also gave me a home nebulizer. The steroid is giving me high blood sugar and  frequent urination. The lung problem is creating the MS Hug for me also. I do have MS with brain and spinal lesions but am not on any of the MS drugs yet. No new lesions. I could use some feedback on the lung and prednisone problems. Anyone?

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  • mike March 11, 2010
    mike
    March 11, 2010

    I'm back: Some of the  rest of the story. Since Aug.11-09, the two down the throat byops.,& a later open lung byops, I've been under house arrest, oxygen 24-7. Because of the flue threat. Please do whatever you have to do to take care of your lungs. I don't mean to scare you but you don't want to be where    I am. Look it up on the net. IT's all about scarring of the lungs. HEY i'm a cap-  tive audiense (sp). IF I can help, you know where I'll be. GOD BLESS YOU AND YOURS......Mike...........  

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    • Katkan
      March 13, 2010
      Katkan
      March 13, 2010

      Hi Mike, Thanks for being there! I've been told by my reg MD that I have some kind of interstitial lung disease. Pulmo doc says I can have a biopsy if I want one. (Who does?) Trying another CT first. How long were you on the pred before it stopped working? What doseage? My eyes also hurt, like something pushing from the insides. I am on a monthly IV infusion of igg, called Gamagard, an immune system builder. Heard of this? Only 3 so far, not much change. I use the vibrating vest 2x daily and nebulizer 4x daily. Along with pred and antibiotics, I'm also taking Theophilline. Don't know if the MS is related to the lung thing. Can't get a straight answer. And please tell me more about the new med you're on. Sorry so many questions. I feel pretty alone and, like you, a prisoner in my own house. God help us! Katkan

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    • mike
      March 14, 2010
      mike
      March 14, 2010

      Hi there, Katkan; It was a about six mo. on preds. topped out at 40mgs. The steriods good for short run. The down the throat byops not bad, they knock you out run a tube to the lung grab a small hunk of tissue. The whole deal lasts about 2-3 hours. The sample goes to path lab. I've had 2 of these. They found it was pulm fibro, but not what kind. Had a open lung byops. Not real fun. What I have is Obliterative Bronchiolitis. I'm on Bateseron injections, Zitromax 3xwk advair 250/50,  prednisone 20 mg daily. My neuro & lung spec are working with each other, first time they've ever heard of MS & PF in same animal. Ain't we special. The Betaseron has alot of antinflam. meds, their  thinking ,or hopping that it will cut back the need for preds. My md sent me to neuro,and lunger . He didn't ask me if i wanter to. Wed. 3-18 eye surg.to relieve pressure. I wish my state had med. Cannibus.  Hope I helped. Keep in the back of your mind that IT IS WHAT IT IS & pull it out often. GOD BLESS YOU & YOURS. ... Mike .....                                     

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    • Katkan
      May 08, 2010
      Katkan
      May 08, 2010

      Hi Mike, Thanks for talking to me. No one else has. Still here & still in trouble. I get to 17.5 mg pred & can't breathe again. Now can't walk accross a room without panting. Saw pulm doc yesterday. CT scan was clear but I'm coughing blood after several days of very tight chest constriction. (MS Hug seems to get alot worse when the lungs tighten up.) He put me on 10 days doxycyline & wants a bronchoscopy next Monday. Scared out of my wits. I'm very hard to sedate & I have bad luck with surgeries & proceedures. I almost bled to death in routine sinus surgery Jan 2009, then the lung problems got MUCH worse. Now back up to 50 mg pred, taper for a week. Been on this love/hate drug since last April.  He wants me MUCH lower for maintainance. I want NONE! How bad is the "twilight sleep" bronchhoscopy? Do you know? Do you cough blood?  Do you wake up in the morning gasping for more air? I've discovered that, when you can't breathe enough air, NOTHING  else in your life matters. These docs can't find my problem & still say it's not MS related. I'm trying to get on Copaxone but still no prescription. Been waiting about a month. Can you tell me about these symptoms  & proceedures in your experience?   Katkan

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    • mike
      May 08, 2010
      mike
      May 08, 2010

      Hello Katkan; You are right about the importance of being able to breath. Reality will rear it's head, and no claiming denial. The two byopsys I had took about two hours each, start to finish. They just knock you out, insert thingy down throat to the lung, get tissue or just look around. Then they kinda washed the insides of the lungs. Have you had any pulm function tests. This test will tell them how the lungs are working. All the functions are based on percent of performance. My last test showed a 47 to 52 % capacity. I'm like you, can't do much without running out of breath. Since MS can cause lung problems, it can effect any part of the body. The only new meds are two antibiotics, new pain med. Just take one day at a time. Hope this has helped. GOD BLESS YOU AND YOURS...Mike..

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    • Katkan
      June 04, 2010
      Katkan
      June 04, 2010

      Hi Mike, Just to let you know the bronchoscopy is over except for the pathology samples, which take months to grow. The pulm doc says it's "bronchiectasis". It's over-expansion of the bronch tree, the small openings deep in the lower lobes of the lungs. They"ve become like over expanded balloons that won't go back to their original shape. There was also cloudy fluid in the lower lobes, especially the right side. The proceedure was traumatic, especially after it was over. I felt like I was drowning. I was awake throughout, and the doc vaccummed the fluid back out after the "wash". There's no cure, just treatment. (sounds like MS) This condition was caused by repeated pneumonia. Now they have to find what's causing the pneumonias. After a year of being breathless, I went to a new church Wednesday night. They prayed for my lungs to be healed. I am so astonished that I feel so much better, even breathing SO much better. A miracle is just what is needed right now. I will be praying for you also. Thanks for being there for me! I'll let you know what the pathology finds. Now we need to pray for the MS. The burning feet have become a big problem. God Bless us, Katkan

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    • mike
      June 04, 2010
      mike
      June 04, 2010

       Hello Katkan; Well we are both still here! Praise the LORD! Prayer is so very powerfull. WE have no idea the # of people who's prayer lists we are on. I've recieved cards and letters from Churches I've never been too. I'm so glad to hear you found out what it is with your lungs. It could always be worse. As bad as things seem, our Faith in GOD will lead us to and thru whatever it is. I tell people that which ever way this ends up for me is a win/win. Many of my church family don't understand what I mean. I just say the longer I'm here I'm with family and freinds. The sooner I'm called home to be with the LORD I'll be with family an freinds. After facing Death face to face more than once, when HE"S ready for me I'll be going with a smile on my face. Don't give up, WE are here for a reason. GOD BLESS YOU & YOURS.......Mike........

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    • Katkan
      June 06, 2010
      Katkan
      June 06, 2010

      Hi Mike, Thanks so very much for your testimony. Here's mine. I have been saved for 33 years. This new church will now be my home church. I have been a "Praise & Worship" Team leader for 7 years, and a professional singer all of my life. I was a night club entertainer before I found the Lord. I've made 2 Christian cd/records in two decades. The breathing problem, not MS, was preventing me from using God's gift. When I was healed, I laughed like a little baby with true joy for the first time in my life, like bubbling inside of me. I can sing again. After having no church family and being homebound for a year, I am FILLED with joy. My church will now add you to their list. It's remarkable that my lungs truly FEEL different, no more wheeze or tightness at all, but the other stuff like MS symptoms and arthritis, are still very evident. I will start believing God for the other problems now, but you are right. No matter what, the situation is "win/win". Whatever He wants will work for the best. I trust Him. Lung sickness really got to me spiritually, mabye because I had no church family during that time. God was teaching me how to trust in Him alone. Not an easy lesson, but all His lessons are worth the pain. God bless you brother. I'll be believing! Katkan 

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  • mike March 11, 2010
    mike
    March 11, 2010

    Hi there Katkan; I'm Mike(weezer). Like your handle, better than Katkant. Keep thinking positive. Dx 02-09 with RRMS & lung proplem. Neuro put me on somas & prednisone. MS & lungs liking the preds. Two down the thoat byops. Found Pulmanary Fibrosis (not good) but for me knowing better than not knowing. The preds quit working, so neuro,and lunger after increasing dosage began big taper down. Going to try something else. Aug-11-09 my lungs said no,no,no. 4 days  trauma unit.I didn't know how to slow down, but GOD did. I wasn't listening. HE  got my attention!!! I'm now on Betaeron, a matainense dose of preds. Preds. for me were good for the short run. The long run caused eye pressure to increase.   Which they call Glocoma. Having eye surgery 4-11-10 to fix it. The Betaseron has alot of antinflamitory meds. in it. Along with antibiotics,they are studying the effects on both. Steroids are good. For me the lesser the better. GOD BLESS YOU & YOURS.........MIKE..........

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  • mike March 11, 2010
    mike
    March 11, 2010

    Hi there Katkan; I'm Mike(weezer). Like your handle, better than Katkant. Keep thinking positive. Dx 02-09 with RRMS & lung proplem. Neuro put me on somas & prednisone. MS & lungs liking the preds. Two down the thoat byops. Found Pulmanary Fibrosis (not good) but for me knowing better than not knowing. The preds quit working, so neuro,and lunger after increasing dosage began big taper down. Going to try something else. Aug-11-09 my lungs said no,no,no. 4 days  trauma unit.I didn't know how to slow down, but GOD did. I wasn't listening. HE  got my attention!!! I'm now on Betaeron, a matainense dose of preds. Preds. for me were good for the short run. The long run caused eye pressure to increase.   Which they call Glocoma. Having eye surgery 4-11-10 to fix it. The Betaseron has alot of antinflamitory meds. in it. Along with antibiotics,they are studying the effects on both. Steroids are good. For me the lesser the better. GOD BLESS YOU & YOURS.........MIKE..........

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