Guest guest Posted December 24, 2005 Report Share Posted December 24, 2005 on 12/24/05 1:32 AM, sarleno@... at sarleno@... wrote: Peggy, I haven't been prescribed anything as yet, but from what I've heard about prednisone, I think I'll refuse it. Nobody has anything good to say about it. Good luck in your fight. Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Peggy, From what everyone says, Prednisone is pretty nasty. I was diagnosed at Chicago's Westside VA facility, which is staffed mostly by University of Illinois @ Chicago doctors, who are well familiar with IPF. My pulmonologist, who is a professor there ( & very familiar with it), ruled out steroids right from the beginning, saying that they had no proven value against IPF. I got my 2nd opinion at the University of Chicago, and prednisone wasn't even brought up. Oh, well... All my best & good luck,....Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 on 1/30/06 10:20 AM, sarleno@... at sarleno@... wrote: Hi Arlen, Yes prednisone has really nasty side effects. I have finally gotten down tom 5mg. and will come off that in three more weeks. My DR. put me on it at 60 mg. hoping it would stop the progression of the ipf. I also had pneumonia at the time, well we know 70 lbs. and many sick days later that didn't work. But we tried. I have a very hard time coming off the drug. Hope your doing well. Good Health to you, Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Same with us at our VA--the Pulmonologist said the side effects were not good and no proven help either. We passed. Judy >From: sarleno@... >Reply-To: Breathe-Support >To: Breathe-Support >Subject: Re: Prednisone >Date: Mon, 30 Jan 2006 10:20:15 EST > >Peggy, > From what everyone says, Prednisone is pretty nasty. I was diagnosed >at >Chicago's Westside VA facility, which is staffed mostly by University of >Illinois @ Chicago doctors, who are well familiar with IPF. My >pulmonologist, who is >a professor there ( & very familiar with it), ruled out steroids right from >the beginning, saying that they had no proven value against IPF. I got my >2nd >opinion at the University of Chicago, and prednisone wasn't even brought >up. Oh, >well... > > All my best & good luck,....Arlen _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 What are the side effects that some of you have experienced, if you don't mind me asking? ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Hi Ginger, I am the anti-prednisone person. #1 it does nothing for IPF. I have gained 70 lbs . I am coming off now the side effects are terrible. Never again. Be sure to have your Dr. tell you just what he thinks it's going to do.. Peggy on 2/5/06 12:31 PM, Ginger at TongueDancer2U@... wrote: Please, share with me why so many of you do not wish to take Prednisine. I guess I have never heard the downside of it.I have a wonderful Pulmonary Dr. and have built up a great trust in him and we communicate clearly. I have enjoyed everyones input thus far. This thing makes me a basket case sometimes. God bless you all and those you hold dear to you. ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Ginger, Most of us do not want to suffer the terrible side effects of prednisone. They can be very hard on your body and many say that they are not in the least bit effective. My wife is the IPF victim and she has a very wonderful lung doctor who is informative, patient and has great bedside manners. He brought up using this drug once but left it up to my wife. I asked him if he would prescribe it to his mother and he said " no " . Enough said? It is hard to determine just what to do when you are first confronted with this disease. There is great support here though. Bob in Utah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Thank you so much Leanne. I have been on prednisone since the onset...or when they told me I had IPF~2004. In the beginning I was taking 20mg am and pm. When I went to Dallas for my transplant eveluation the Dr decreased it to 10mg am and pm. Thats where I am now. I also take NAC 600mg...2 capsules am and pm, and Tussionex for cough. Not sure about the 'moon face' as my face is round anyway. Haven't gained any weight as of yet. (keeping fingers crossed) I have experienced some insomnia. But not hunger. Spacey...yes and I am forever loosing my train of thought and so very forgetful. I am on 3L of oxygen and have been for over a year. I do have inflamation, too. I have been taking a gram of cytoxin (chemo)every month for 4 months to try and stop the inflamation. This will continue till I have had 6 treatments. Insurance would not pay for the interferon~gammaB1 shots as it has not been approved for pulminary fibrosis. I am so happy to have this support group. Sometimes I feel all alone here...most think I am the same as always, only difference is I just haul an oxygen tank with me. I lost my husband 6 months ago in a tragic car accident 10 minutes from our front door. He was my greatest supporter and such an encouragement. God has held me in the palm of His hand so many times. Thank you for the extended hand of encouragement and informaton. God keep His hand on all of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Ginger When my Dr. first told me of my condition and I asked him what could be done, the first thing he told me was not to let anyone convince me to go on Prednisone. First he said it does nothing for "I"PF and the side effects are bad. Since then this group has convinced me that he was correct. Dave Re: Prednisone Hi Ginger, I am the anti-prednisone person. #1 it does nothing for IPF. I have gained 70 lbs . I am coming off now the side effects are terrible. Never again. Be sure to have your Dr. tell you just what he thinks it's going to do.. Peggyon 2/5/06 12:31 PM, Ginger at TongueDancer2U@... wrote: Please, share with me why so many of you do not wish to take Prednisine. I guess I have never heard the downside of it.I have a wonderful Pulmonary Dr. and have built up a great trust in him and we communicate clearly. I have enjoyed everyones input thus far. This thing makes me a basket case sometimes. God bless you all and those you hold dear to you.~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Body aches, joint pain, total weakness, depression, diarrhea, constipation, moon face, starving and never really feel full therefore the weight gain. Muscle weakness, I can't remember much more of them but I guarantee there are more. oh yes hair growth, dry skin, thin skin = bruising. I think you might get the idea from these. Peggy on 2/5/06 5:56 PM, TongueDancer2U@... at TongueDancer2U@... wrote: What are the side effects that some of you have experienced, if you don't mind me asking? ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Ginger, I have to admit that I do not think I would have had the courage to fight this disease if I had not had the support of my husband. Good luck. maryTongueDancer2U@... wrote: Thank you so much Leanne. I have been on prednisone since the onset...or when they told me I had IPF~2004. In the beginning I was taking 20mg am and pm. When I went to Dallas for my transplant eveluation the Dr decreased it to 10mg am and pm. Thats where I am now. I also take NAC 600mg...2 capsules am and pm, and Tussionex for cough. Not sure about the 'moon face' as my face is round anyway. Haven't gained any weight as of yet. (keeping fingers crossed) I have experienced some insomnia. But not hunger. Spacey...yes and I am forever loosing my train of thought and so very forgetful. I am on 3L of oxygen and have been for over a year. I do have inflamation, too. I have been taking a gram of cytoxin (chemo)every month for 4 months to try and stop the inflamation. This will continue till I have had 6 treatments. Insurance would not pay for the interferon~gammaB1 shots as it has not been approved for pulminary fibrosis. I am so happy to have this support group. Sometimes I feel all alone here...most think I am the same as always, only difference is I just haul an oxygen tank with me. I lost my husband 6 months ago in a tragic car accident 10 minutes from our front door. He was my greatest supporter and such an encouragement. God has held me in the palm of His hand so many times. Thank you for the extended hand of encouragement and informaton. God keep His hand on all of you. marymassung Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 TongueDancer2U, I am so very sorry for the loss of your husband. That just shook me when I read that. I am so very dependant on my husband for emotional support. I don't know if I could be strong enough to withstand that loss and still have strength to fight fibrosis. The phrase "God has held me in the palm of his hand" is one I use a lot. That gives me such comfort to know that is true. I do not know how people face terrible illness and death without God. Please don't feel alone. Let us help you if we can. I will remember you in my prayers and you can talk to me anytime. Joyce>> > Thank you so much Leanne. I have been on prednisone since the onset...or > when they told me I had IPF~2004. In the beginning I was taking 20mg am and pm. > When I went to Dallas for my transplant eveluation the Dr decreased it to > 10mg am and pm. Thats where I am now. I also take NAC 600mg...2 capsules am and > pm, and Tussionex for cough. Not sure about the 'moon face' as my face is > round anyway. Haven't gained any weight as of yet. (keeping fingers crossed) I > have experienced some insomnia. But not hunger. Spacey...yes and I am forever > loosing my train of thought and so very forgetful.> I am on 3L of oxygen and have been for over a year. I do have inflamation, > too. I have been taking a gram of cytoxin (chemo)every month for 4 months to > try and stop the inflamation. This will continue till I have had 6 treatments. > Insurance would not pay for the interferon~gammaB1 shots as it has not been > approved for pulminary fibrosis. I am so happy to have this support group. > Sometimes I feel all alone here...most think I am the same as always, only > difference is I just haul an oxygen tank with me. I lost my husband 6 months ago > in a tragic car accident 10 minutes from our front door. He was my greatest > supporter and such an encouragement. God has held me in the palm of His hand > so many times. Thank you for the extended hand of encouragement and > informaton. God keep His hand on all of you.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Add to those side effects: shaky, jittery, crying all the time, irrational, teeth and mouth problems, stomach upset.....I am still on low doses but the side effects are gone. I always say it is the best of drugs and the worst of drugs. Because my fibrosis is caused by automimmune disease (lupus), it was and is for the inflamation. > > What are the side effects that some of you have experienced, if you don't> mind me asking?> > ~Ginger~> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Ginger, I can empathize with you on the loss of your husband. I lost mine in September of last year. He was my greatest supporter and the love of my life. I just keep putting one foot in front of the other, go to work every day and keep all social commitments with friends and family. Everyone has been wonderful to me and I count myself among the fortunate. All the best..... Barbara J. -------------- Original message -------------- From: TongueDancer2U@... Thank you so much Leanne. I have been on prednisone since the onset...or when they told me I had IPF~2004. In the beginning I was taking 20mg am and pm. When I went to Dallas for my transplant eveluation the Dr decreased it to 10mg am and pm. Thats where I am now. I also take NAC 600mg...2 capsules am and pm, and Tussionex for cough. Not sure about the 'moon face' as my face is round anyway. Haven't gained any weight as of yet. (keeping fingers crossed) I have experienced some insomnia. But not hunger. Spacey...yes and I am forever loosing my train of thought and so very forgetful. I am on 3L of oxygen and have been for over a year. I do have inflamation, too. I have been taking a gram of cytoxin (chemo)every month for 4 months to try and stop the inflamation. This will continue till I have had 6 treatments. Insurance would not pay for the interferon~gammaB1 shots as it has not been approved for pulminary fibrosis. I am so happy to have this support group. Sometimes I feel all alone here...most think I am the same as always, only difference is I just haul an oxygen tank with me. I lost my husband 6 months ago in a tragic car accident 10 minutes from our front door. He was my greatest supporter and such an encouragement. God has held me in the palm of His hand so many times. Thank you for the extended hand of encouragement and informaton. God keep His hand on all of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 My Pharmacy told me prednisone is one of the top 10% medicines prescribed in this country.It treats many things, allergies, inflamation, shortness of breath. I had no choice of starting it while in the hospital in Critical Care Unit. I am down to 10 mg a day and cannot get lower, although I keep trying by 1 mg. every month right now. Then I get a cold and the shortness of breath returns and I have to raise it again. I refuse to go above 10 mg. ever again. My bones are getting brittle after taking it since Aug. 2003. My shoulder was hurting and the xray showed a healing fracture. I have no idea when and where it happened. I do have a high tolerance to pain, but this is crazy. Quality of life for me is with the prednisone now and forever. So I weigh more, I can hug my grandchildren. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 I visited my Pulmonary Dr. today. We had a long discussion about Prednisone. He said I was the exception...No moonface or most any of the "side effects". I take Fosamax for the brittle bones. I do have some 'feet swelling', that is one of the side~effects of Prenisone. He told me those that go off of Prednisone, their bodies usually produces a certain amount of its own. Predisone is used often for the overdose of acetyminophen. I have been fortunate and not gained any weight while on it. In the beginning, I was on 80mg. went down to 40mg and now am on 20mg. I have to agree with Ann , for me it's quality of life. If it's not broken, don't fix it. I would think that this steroid must be critiqued on the effects on each individual. I may just be the rarity. kiss kiss, ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Ann, Quote: "So I weigh more, I can hug my grandchildren." I took it in large doses when I got really sick with pneumonias. I have taken it for months at a time. All the side effects are just devastating. I still take low doses. But, I took the same position as you have taken. If it will buy me more time with my grandkids....I will do whatever it takes. I hated it, but I would probably do it again...even though I have said otherwise. My bones, teeth, muscles and everything else is shot.....but I got up this morning! We all have to decide what course our treatment will take along with our docs. I just pray that all of you are getting the right treatment for you. Happy Hugging Ann, Joyce p.s. I love yellow roses. >> My Pharmacy told me prednisone is one of the top 10% medicines > prescribed in this country.It treats many things, allergies,> inflamation, shortness of breath. > > I had no choice of starting it while in the hospital in Critical Care > Unit. I am down to 10 mg a day and cannot get lower, although I keep > trying by 1 mg. every month right now. Then I get a cold and the > shortness of breath returns and I have to raise it again. I refuse > to go above 10 mg. ever again. My bones are getting brittle after > taking it since Aug. 2003. My shoulder was hurting and the xray > showed a healing fracture. I have no idea when and where it > happened. I do have a high tolerance to pain, but this is crazy. > > Quality of life for me is with the prednisone now and forever.> So I weigh more, I can hug my grandchildren.> > Ann> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Ginger, You wrote: "I take Fosamax for the brittle bones." Wow, this is an important one. I didn't realize how important until I was being lazy about it for a year, not taking it regularly and my bone density test showed incredible change for the worse. I hate to take it because I have to wait 30 minutes for my morning coffee on those mornings once a week. I switched to Boniva; that is once a month. With that you wait an hour and it is sooooooooo expensive. So, I went back to Fosomax and have been diligent about taking it. For those of you waiting on transplant....Not developing Osteoporosis is important. I got a call from the tx hospital and they think my osteo is too bad to even put me on the list. ( No visiable signs, just bones easy to break.) Some other health problems being considered, but this was at the top. Osteoporosis is in my family and prednisone usage is caustic to bones. I was a sitting duck. Ginger, so good to read your posts. Gives me courage for another day. If you can do it, I can do it! So here goes another day. Off to get my teeth drilled...Aaargh!!! Joyce >> I visited my Pulmonary Dr. today. We had a long discussion> about Prednisone. He said I was the exception...No moonface or most any of > the "side effects". I take Fosamax for the brittle bones. I do have some 'feet > swelling', that is one of the side~effects of Prenisone. He told me those > that go off of Prednisone, their bodies usually produces a certain amount of > its own. Predisone is used often for the overdose of acetyminophen. I have been > fortunate and not gained any weight while on it. In the beginning, I was on > 80mg. went down to 40mg and now am on 20mg. I have to agree with Ann , > for me it's quality of life. If it's not broken, don't fix it. I would think > that this steroid must be critiqued on the effects on each individual. I may > just be the rarity.> kiss kiss, > ~Ginger~> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.