beckyg Posted November 3, 2003 Share Posted November 3, 2003 The longer I take the prednisone, the more reasons I can think of to hate it. (But there is of course, the bigger fact that without it I can't get around the house without O2 up my nose). I knew that it could make me mean, and I have so far been conscious enough of that possibility that my family hasn't noticed me being meaner than usual. But, boy, am I. I just manage to keep my mouth shut and not actually say what I am thinking. Last week a friend who has always been a couch potato wrote and said that she has been jogging--training for the Susan G. Komen Breast Cancer Walk. She is up to jogging 2 miles in just under 25 minutes. My first e-mail (which I erased before I sent) ranted about supporting breast cancer and how nice it must be to be able to walk 2 miles period. I have not posted much lately unless it is entirely about myself. I am reading and in my sane moments cheering or crying with you all, but I have made it a rule lately that if my immediate response is tacky, I don't write anything--no reason to subject anyone else to my rudeness. Once I get over this cold, maybe I can start dragging myself to the exercise bike. I need to do something to help expand my lungs so I can lose the steroids. Becky Quote Link to comment Share on other sites More sharing options...
ginnyde Posted November 3, 2003 Share Posted November 3, 2003 Becky, Sticks and stones will break my bones, but words will never hurt me. You just get on here and me as mean as you want. A little spicy talk won't hurt. Hope you can get off those steroids soon, but don't leave us wondering about you. Ginny Quote Link to comment Share on other sites More sharing options...
Hebbie Posted November 3, 2003 Share Posted November 3, 2003 Hi Becky, I was going to post something about steroids myself this morning. I thought about entitling it "STEROIDS SUCK". I am on my third week of Prednisone -- now I know that isn't a long time but I already can't wait to stop taking these stupid things!!! (Doctor's appt next week, hoping he stops it). I knew that they could supress your immune system -- and I have been eating so healthy since diagnoses that I haven't had a single cold -- wouldn't you know that 4 DAYS into taking these things, I developed my first cold. It was mild and went away in 2 days but I thought MAN -- THEY REALLY DO WACK YOUR IMMUNE SYSTEM..... HOW RIDICULOUS THAT WE NEED OUR IMMUNE SYSTEMS IN TIP TOP SHAPE TO FIGHT THE CANCER.....AND THE CANCER TREATMENT CAUSES YOU TO NEED STEROIDS......WHICH SURPRESS YOUR IMMUNE SYSTEM.......It's a ridiculous cycle when you really think about it!!!!! I also reduced my dosage Saturday from 3 pills a day down to 2 -- and all day yesterday I was light headed and felt "off". Then, last night, I was breaking out in a cold sweat on and off. I called the doctor and they said it is hormonal changes from my body readjusting to the new dose. How crazy is this? I was actually having withdrawal...... I have also been a cranky SOB to my poor fiance....the man is a saint..... SO.....I guess the only advice I can give is to tell EVERYONE you encounter to pay no attention to your moodswings and blame it on the steroids!!!! I wonder how long we can milk that excuse..... Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted November 3, 2003 Share Posted November 3, 2003 Becky, Tapering off prednisone has to have been some of the worst times of my life. I hate the stuff. It keeps me up nights, gives me wierd dreams, and then makes me a crazy lady when I taper it off, weeping and weeping like a hired mourner at a wake. Sounds like you are dealing with it admirably and deserve a standing ovation!!! Prednisone is a great med for lungs. Does NOTHING for personality, and even less for attitude. Carry on! you are doing fantastically well. I pray that soon you won't need the prednisone, too. MaryAnn Quote Link to comment Share on other sites More sharing options...
Candy Posted November 3, 2003 Share Posted November 3, 2003 I agree with Ginny - vent and be mean as much as you want, its what this board is all about. Steroids are the pits! Everytime I would try to talk to the doctors about them they would smile and tell me the side effects were indeed bad but the drug was necessary. Somehow that didn't help Hugh and I feel any better. Quote Link to comment Share on other sites More sharing options...
beckyg Posted November 3, 2003 Author Share Posted November 3, 2003 You guys are nice, but I think I'll still try to hold my tongue. I am afraid that if I start being a little bit tacky the whole avalanche will fall. I have had to quit reading the Grieving section altogether because ugly things come to mind when people post about very real pain. Two things that have legitimately aggravated me recently: My grandmother truns 79 next month. For years on her birthday, she has said, "Well, this might be my last birthday." No I hear through the grapevine that she says, "Well, I just hope I don't outlive Becky." The other? I was talking to someone I didn't know about lung cancer and I mentioned that it doesn't necessarily come from smoking ,since I never smoked. She said, "Well, doesn't that make you wish you had smoked?" I told her that I couldn't see why I would wish that I had spent years on a stinky, expensive habit that probably would have made my cancer (and certainly my breathing) even worse than it already is. The closest I get to that is that if I had been a smoker, my coughing likely would have been taken more seriously and I might have been diagnosed sooner. Becky Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted November 3, 2003 Share Posted November 3, 2003 Becky, I too can certainly relate with your feelings concerning the prednisone. I have been taking them since March. I am taking 40 mg. per day, right now that is. I was taking 60 mg. They have told me that i will be on these for quite some time. I know one thing these are the most bitter horrible tasting things in the world if you dont get them down the first time. YUCK ! nothing is worse. I also have had thrush in my mouth twice and a case of shingles that i attribute to prednisone. Shingles are no fun. Well at any rate i agree with everyone else about venting. This is the place to do it. I wish you the best Becky hopefully you will be able to taper off these things soon. Greg Quote Link to comment Share on other sites More sharing options...
Candy Posted November 3, 2003 Share Posted November 3, 2003 As for staying away from the grieving forum - there were many days (weeks/months) that I could only bring myself to enter the good news forum. Quote Link to comment Share on other sites More sharing options...
glo Posted November 6, 2003 Share Posted November 6, 2003 BeckyG - Glad to hear you are human enough to feel mean and to feel guilty about feeling mean! lol Just looking at your picture with that sweet little girl always makes my heart turn over. How can life be so mean to you? And yet you manage to juggle a career, child raising, and I'm sure many more things and still devote time to helping people on this board. I don't know you, but from reading your posts I admire you very much. Wish I lived in close proximity so I could help you in some way -- maybe sitting with that sweet little girl while you catch up on your paperwork. As for the grieving forum -- even those of us who are grieving find it hard to read. Yes, there is very real and intense pain there, but there is also the reality that those we grieve for are not suffering any longer and so therefore a part of our prayers have been answered. Although we are suffering intensely emotionally, I think most of us are in fairly good health physically. And you, I'm sure, are suffering physically and emotionally and you must stifle a lot of that for the sake of your little girl. Cut yourself some slack -- you deserve to have some mean thoughts -- life really sucks sometimes. Your story about the woman who said "doesn't that make you wish you had smoked?" really made me laugh. Not a brain in her head! Wishing you: easier breathing, weaning off the Prednisone, a NED report, and a long and happy life raising that little girl. Gloria Quote Link to comment Share on other sites More sharing options...
Snowflake Posted November 6, 2003 Share Posted November 6, 2003 Becky, Get a disk and keep a virtual diary (password protected, of course)....Put all those bad thoughts into it, pour out the nasties (typing is faster than trying to write it all down) and when you are starting to feel better, smash it, break it, toss it. It DOES help to "spit" it all out, even if the only "person" listening is your PC. ...and DON'T register for a gun permit until you are steroid-free. Sounds like attitude will be a good home protection for you right now.... (I'm not on the steroids and have had some moments like that - just last night I threatened to take a bat to someone outside my house talking on a flippin' cell phone FOUR FEET from my bedroom window at 10PM! My spouse went outside and was rather polite to the SOB with the phone....I don't know if he threatened to turn his cranky wife loose with her Louisville Slugger or what! I CAN tell you that had I gone outside, only his proctologist would have been able to dislodge his phone AND find his head....LOL) Take care, Becky. I think it's the ornery/blue season... Becky (Ever feel like YOU'RE someone's doppleganger?? The evil twin? I do...not that YOU are, that I am... ) Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 8, 2003 Share Posted November 8, 2003 Thanks to all of you for your comments regarding prednisone. I learned something about side effects from each of you. So far, when my pulmonologist puts me on it he gives me a calander of how much to take each day with a tapering off and stop plan. Sometimes he has to put me back on it fairly soon but thanks to you I know others are on it for the same reasons and am learning about side effects. He also puts me on small dose when I lose weight because of no appetite and immediatly I am hungry. Thanks again to each of you. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 8, 2003 Share Posted November 8, 2003 I am curious about the amount of predisine each of you are taking, how long you have been on it and what was the reason the doc put you on it???My daugherter occassionally is on it as a last resort to treat her asthma and it makes every bone in her body ache. Has anyone else experienced that? Where did you learn about all these side effects? I have so much to learn and appreciate your help. God Bless each of you. BLT Quote Link to comment Share on other sites More sharing options...
beckyg Posted November 9, 2003 Author Share Posted November 9, 2003 BLT, I am currently taking 20 mg a day of prednisone as a treatment for the fact that radiation FRIED my lung. More formally, it is called radiation pneumonitis, and it is a much more common result of chest radiation than my radiation oncologist led me to believe. I have been taking steroids since July 21. I started on 10 mg, did well on those for 6 weeks, then things got significantly worse when I stepped down to 5 mg, so back up to 10. My breathing improved, but not up to where it was when I cut down to 5, so then I went up to 20 mg. Becky Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted November 9, 2003 Share Posted November 9, 2003 BLT, i have been on prednisone since 3/2003. My pulminary Dr. put me on them. Check out this site it should explain all you need to know about the prednisone. http://www.nlm.nih.gov/medlineplus/drug ... 01102.html I have been on 40 mg. per day for several months now. We tried to taper down to 20 mg. however, my breathing got worse so we went back to 40 mg. The side effects vary from person to person but my side effects have been as follows. Aggitation,joint pain,thrush,and at first severe acid reflux. Prednisone has been very hard on my stomach. I had horrible acid reflux from it. I take the little purple pill called Nexium for the acids. Since being on the nexium i havent had any probs with it at all. Well i hope this is of some help to you. Regards Greg Quote Link to comment Share on other sites More sharing options...
lenr8 Posted November 16, 2003 Share Posted November 16, 2003 Did someone say they broke a rib from coughing? When they switched me to Prednisone from solumedrol dose pak, things got got much worse. Breathing got worse and I couldn't stop coughing and now they think I have broken a rib or two. They put me back on Solumedrol dose pack but if I have to cough its the worse pain of my life. I am going to go Disney World next week and nothing with stop me from that. Quote Link to comment Share on other sites More sharing options...
teresag Posted November 17, 2003 Share Posted November 17, 2003 "Well, doesn't that make you wish you had smoked?" I would find it hard to think of a more insulting and ill-informed remark. What drives people to say these things? I guess we'll never know, but it never fails to amaze me. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 17, 2003 Share Posted November 17, 2003 You guys sure are encouraging regarding the pneumonitis. Now I am wondering if it ever clears up! Seriously, does any one have an answer to that? The radiation oncologist that I saw last week said it should be getting better "any time" as it has been 2 months since radiation but it sounds like each of you have had trouble longer than that. I have coughed until I strained a muscle so can believe cracking a rib happened.My husband spoke up and told the doc that I sometimes took Tussin HC at night so we cold rest and she said fine and take Robitussin during the day. The CAT scan did not show any new nodules but the could not visualize the nodule that was radiated due to infiltration or infection. I am anxious to see the pulmonologist 12/9 because I believe I always get the straight story from him. Thanks for sharing information with me. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted November 18, 2003 Share Posted November 18, 2003 Speaking of Steroids -- did anyone see on the news recently that Jerry Lewis just checked into a drug rehab to wean himself off of Prednisone? He said he has been taking 60 mg a day for a year and it is "making him feel insane". My doc started me out on 30 mg a day for a cough caused by radiation damage to my lungs. He has been weaning me off and I am now down to 15 mg a day....in two weeks it will be 10 mg a day and we will see what happens. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 18, 2003 Share Posted November 18, 2003 Heather, I am so glad your Nov. cat scan was negative and will keep the prayers going that it stays that way. Also hope you manage to get off the steriods. I will be anxious to hear how that goes. Is your cough better? I started with 20 mg and am now doing 10 one day and 5 the next and will finally go to 5 until I see the doc again unless I get worse and call his office. I just wonder what is the average length of time folks are on prednisone to clear up pneumonitis. Quote Link to comment Share on other sites More sharing options...
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