Looks like its the season

[Tom]

Hi, been awhile since I posted but have been looking in. I've been dealing with the breathing and after 3 years I am forcing myself to tolerate the reduction of my pred. I want off it and the Drs. want me off but tapering has resulted in negative results. I finally made a decision to taper from the pred. and accept the consequence involving the breathing issues. Unfortunately my lungs were destroyed before I was dx'd and had the lobectomy a couple months before the actual diagnosis. Kidneys took a hit also but they are functioning ok for now anyway. I have a feeling that they might be affected by the pred. taper. I had a maintenance dose of ritoxun, I got 4 doses in 2 trips in part because of a vacation we scheduled. It gave me a little energy and it lasted maybe 3 weeks but I have been having some crusting and sinus problems just like when this all started in 2008 but didn't manifest itself until 2010. Dr says I can take my 02 up to 3 liters if the breathing gets to the point that 2 wont work as well. Im there now but resisting the increase because I don't want to become dependent on that much just yet. Don't know why but I just don't want to go to 3 yet. I was dx'd with GERD this summer which I suspected for years and they removed 2 polips from my espophagus and have been dealing with a naval hernia for a couple of years that is causing me problems and I might have a partial abdominal blockage which hospitalized me fr 14 days last year. The family Dr is making a referral to the Gastro but she says they may not want to do surgery because of my lungs. I guess by looking at the forum there are a lot of flares going on, does the season/weather have something to do with it? Any way Y'all stay well!

[Pete]

'Tis the season when more people are sick and spreading their germs. A good reminder to us weggies to practice good hand hygiene, avoid sick people whenever possible, and perhaps wear a surgical mask when in a crowd.

[Debbie C]

"Tis the season alright.It sounds like you have alot of things that I have also Tom.I also have gerd and a hiatial hernia. And my breathing seems to be getting worse. I had a partial right middle lobectomy to get dxed. I have an inhaler and a neubulizer machine but I also don't want to become dependent on it so I don't use them.How did you do after the rituxan infusions ? What dose of pred are you on? Are you taking anything besides that. The doc said I can get off it , I am currently at 5 mg. but am not on any other drugs so I'm a little scared to be drug free right now. Hope you do well and Happy Holidays !

[Tom]

HI Debra, I cant help but wonder how much of my issues over the years have to do with my initial injury in 2000 when I broke my back but it seems like things went down hill from there. But anyway In April 2010 I was put on 60 mg of pred. and 500 mg twice daily of Cytoxin. I got off the cytoxin after about 7 months. The dr. tapered my pred to 40 for the next year with tapers tried in that year. I finally got down to 30 mg and eventually 20 to 10 but ended up in the hospital when I was 1 week into the 10mg and was scheduled to go to 5 mg the following week. I was sent home on 40 mg again and tapered down from there to finally 20 mg and as of today I am at 15 and will reduce again next week but the breathing is hard and that is why I conveyed to my pulmo I was ready to go to the next level regardless of the consequences. I think that's going to be back to the hospital and I am contemplating calling before the holiday or try to wait it out till Monday. That thinking never works in my favor. The ritoxin treatment was uneventful as the first one last year and I had 4 sessions and I really had no noticeable change but I had been not feeling well for a few months so we did the ritoxin as a precaution. We did another round this year but did 4 treatment in 4 sessions, I dealt with the treatment well. Im on several meds a total of 13 including insulin and I take as many as 26 meds a day if Im honest about it. The pred is the one I want of of the worst but its the life in me I believe. The pulmo says from his point of view, I can taper off it completely but my RA says I will be on it the rest of my life but ideally around 2.5 mg and no more than 5 mg worst case scenario. The RA reminds me however, that if I skip any meds, DO NOT SKIP THE PRED OR CELLCEPT. I am upbeat about life. but I'm also aware that the COPD is progressive and I'm in severe stage and cannot get a lung transplant. So I'm also a realist. I've never looked to the Heavens and asked why me? But look up and say thank you because its me and not a grandchild or my own kids or my wife or any of my family members. Don't be scared of getting off the meds. Listen to your body and you will know when things aren't right and intuitively you will call the dr when you need to, although I procrastinate myself but don't wait To answer you question about the rtx, every one may react differently but for me I got a boost, kind of like an adrenolin shot I got in the middle of my 16 weeks of chemo and radiation. I was unstoppable with energy for about 3 or 4 weeks but then I took a nose dive. The RTX did the same for about 2 weeks, but the healing effects take 3 to 4 months to work its magic if its going to work, but it didn't make me sick at all.I tolerate most meds well. Im hoping to get to 10 mg of pred on Dec. 1. and determined to get to 5 mg soon after. Stay well!