Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 A couple of comments per your request. First, there is a big difference between BOOP and IPF and I don't know where the pathologists have been from but I'd certainly recommend another review of your biopsy slides, preferably at one of the IPF Centers of Excellence where the Pathologist and the Pulmonologist will go over the findings together. Could you tell if your disease appeared to respond to the prednisone? BOOP generally does. You definitely need to get the urination issue checked. Have you got diabetes? Have you been checked since the high dosages of prednisone? If you're remaining at 92-93 for any time while lying then you may not be getting enough oxygen then and certainly not while in activity. What are your saturations when you're moving and active? What you're describing could well be a normal progression of the disease. The one other thing i would urge is an echocardiogram if you haven't had one recently. Pulmonary Hypertension is always a risk and something to be watched for. > > > > > > > Oh Bruce, please don't use the word " driver " in the same sentence > > with > > > > Colonoscopy- -LOL. > > > > > > > > > > > > > > > > > > > > > > That is too funny! When I had mine done I told the doc he was > > > boldly going where no man had gone before. > > > > > > jon > > > 50, sarcoidosis 1/9 > > > -- > > > A little nonsense now and then is relished by the wisest men. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 , Have your sugar tested at once. Prednisone can cause diabetes and frequent urination is one of the first signs. The sad thing is all that prednisone and symptoms are doing nothing for your IPF.. Come off of it slowly. It can be quite a shock to your system if you come off to quickly. I went through the exact same thing with prednisone. Gained 70 lbs in 8 weeks... still a chunkett. God Bless and stay in touch. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." I am trying to understand what is going on. Ever since I had my Biopsy, I have not really had the dry cough. My original Biopsy stated that I had BOOP. After I checked with a second Doctor, it was determined to be be IPF. I have been on 60 mg's of Prednisone since September. Starting in October the Doctor has been reducing my Prednisone by 5mg's per month. One thing I have noticed is that I cannot seem to retain any fluids. I have to urinate constantly. This is more frequent in the morning and tapering off at night. Is this a direct side effect to the Prednisone? Recently I have found that I will just be lying there with my Oxygen Sauration level at 92-93 but my heart rate is runnung at 110. My sleeping heart rate is usually in the 60's. Today I get winded just moving around. On Tuesday I went grocery shooping and was walking around for at least 1/2 hour. I was not gasping for air, and once I sat down I recovered within 3 minutes. Any comments appreciated. --- On Wed, 2/18/09, Bruce Moreland <brucemoreland (AT) gmail (DOT) com>wrote:From: Bruce Moreland <brucemoreland (AT) gmail (DOT) com>Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 4:29 PMWell, first there are many different forms of PF or Interstitial LungDiseases. I don't know how you were diagnosed or if the form wasconfirmed definitively.You are certainly in an early stage at this point and enjoy your health.Now, I also wanted to know and to plan. I have UIP. Many here have NSIPand other forms which may respond to treatment and move slower.So, in general. We don't know how quickly to expect progression orwhether it will come in gradual changes or some more severe changes. Thebest thing you can do to keep it from progressing too severely tooquickly is to avoid germs and at the least sign of any problems, getmedical attention. Rapid progression is often through complications suchan pneumonia which can often be avoided. I would certainly hope you aregetting flu shots and have had your pneumonia shot.Now, I went on oxygen at diagnosis. You'll hear moans and groans aboutoxygen. If you take that attitude it may limit you. However, it's notlimited me. I get out and about. I travel. I can do pretty much what Iwant, just not as long or as hard. I have certain things I can't do butmost of those I can live fine without. Normally you'll find first theneed for oxygen when sleeping and when exerting yourself. Maybe 2 lpm atfirst. Then you may progress where you're requiring 2 lpm at rest and 3or 4 or 5 on exertion. The important thing for me was to understand Ican have a lot more. Later it will be 6 or 8. Eventually as you hit 10or more it becomes more difficult to get enough.At first you can take care of yourself as you always have. Then you hita period in which there are certain things you need help for. I don'tclean my own home anymore. I also don't carry heavy items (have a verynice cart for that). My mobility at this point is still good and I getout every day.Later, there are more things you need assistance on and getting outbecomes more difficult. Just because it takes more time and effortthough is no reason to stop it. You mention a chair. Well, I do own apowerchair although rarely use it yet. But, I know the time is I'll needit to enjoy getting out. If I went to Disneyworld I'd use it today. Orto the zoo. I used it to explore the Riverfront in Chattanooga lastyear. I know that ultimately I'll need it on more of my daily outings.Now, you want to guard against other things such as PulmonaryHypertension. With PF only, most will eventually reach a stage over 10lpm and with no mobility. But, the good part is your brain is stillfunctioning well and you can live relatively free from pain due tohospice. At this point you're looking for pallative care. Knowing whatsavailable provides me great comfort. You get someone experienced helpingyou and the amount of morphine necessary to relieve the pain.As to lifestyle, perhaps not what you dreamed of for yourself, but itcan be very full. Develop things you enjoy (such as this forum) thatdon't require as much mobility. Make online friends or play cardsonline. Meanwhile get out as much as you can but have interests thatwhen you can't get out you can still enjoy. I'm more advanced than you(my lung function was below 50% when I was diagnosed and is in the lower40's depending on what measurement you use). I'm on anywhere from nooxygen sitting sometimes to 2 lpm sleeping to 3 lpm moving around thehouse to 4 lpm out to 5 lpm on the treadmill. My life is good. Myquality of life is good.I take comfort in seeing those further along than I am still enjoyingtheir lives. Not perfect. Not what they wished. But enjoying. Whetherits sitting on the porch in a florida breeze or the latest project inOregon or traveling. I also see those who are in hospice who arecomfortable. They still are sharing time with their husbands and kidsand grandkids and friends. Their hours per day they are doing so may bedecreasing but its still there. Read one or two of Lou's recentposts and you'll see a woman very much alive with hospice. It's not justthe morphine making her a bit crazy and so lovable though. She alwayswas. She has a hospice nurse she very much likes and her dog and atnight her husband and family other times.What this board is about more than anything is learning to live with thedisease. For you at this point thats not difficult. But, you can do itat all stages.You didn't know before the diagnosis how long or what kind of life wasleft. You still don't. Use the diagnosis to tell you to focus onenjoying every day as much as possible. If there are things youespecially want to do in your life, do them now. Don't say, I'll do thatin a few years. A few years often never comes as we can continue to putit off. I have done things since diagnosis that I know I would have putoff forever without.> >> > > Oh Bruce, please don't use the word "driver" in the same sentence> with> > > Colonoscopy- -LOL.> > >> >> >> >> >> >> > That is too funny! When I had mine done I told the doc he was> > boldly going where no man had gone before.> >> > jon> > 50, sarcoidosis 1/9> > --> > A little nonsense now and then is relished by the wisest men.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 While I was on the Prednisone I was not improving or getting worse. I went to a specialist to get the BOOP/IPF issue straightened out. The original Biopsy source has since confirmed IPF. I had an EKG just over a month ago and everything was normal. I had blood test and other than a slightly elevated white cell count, everything else were within normal ranges. I take Sinus/Allergy medicine to keep the nasal passages as clear as possible so that I can breathe easier with greater access to air. I am not on any oxygen. I am scheduled to see my Doctor at the end of March.Sent on the TELUS Mobility network with BlackBerryFrom: "Bruce Moreland" Date: Wed, 18 Feb 2009 19:31:43 -0000To: <Breathe-Support >Subject: Re: Fw: Scare today A couple of comments per your request. First, there is a big difference between BOOP and IPF and I don't know where the pathologists have been from but I'd certainly recommend another review of your biopsy slides, preferably at one of the IPF Centers of Excellence where the Pathologist and the Pulmonologist will go over the findings together. Could you tell if your disease appeared to respond to the prednisone? BOOP generally does. You definitely need to get the urination issue checked. Have you got diabetes? Have you been checked since the high dosages of prednisone? If you're remaining at 92-93 for any time while lying then you may not be getting enough oxygen then and certainly not while in activity. What are your saturations when you're moving and active? What you're describing could well be a normal progression of the disease. The one other thing i would urge is an echocardiogram if you haven't had one recently. Pulmonary Hypertension is always a risk and something to be watched for. > > > > > > > Oh Bruce, please don't use the word " driver " in the same sentence > > with > > > > Colonoscopy- -LOL. > > > > > > > > > > > > > > > > > > > > > > That is too funny! When I had mine done I told the doc he was > > > boldly going where no man had gone before. > > > > > > jon > > > 50, sarcoidosis 1/9 > > > -- > > > A little nonsense now and then is relished by the wisest men. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 I will get with the Doctor as soon as possible regarding my blood sugar. My weight has been very consistant. Sent on the TELUS Mobility network with BlackBerry Re: Fw: Scare today To: Breathe-Support Date: Wednesday, February 18, 2009, 4:29 PM Well, first there are many different forms of PF or Interstitial Lung Diseases. I don't know how you were diagnosed or if the form was confirmed definitively. You are certainly in an early stage at this point and enjoy your health. Now, I also wanted to know and to plan. I have UIP. Many here have NSIP and other forms which may respond to treatment and move slower. So, in general. We don't know how quickly to expect progression or whether it will come in gradual changes or some more severe changes. The best thing you can do to keep it from progressing too severely too quickly is to avoid germs and at the least sign of any problems, get medical attention. Rapid progression is often through complications such an pneumonia which can often be avoided. I would certainly hope you are getting flu shots and have had your pneumonia shot. Now, I went on oxygen at diagnosis. You'll hear moans and groans about oxygen. If you take that attitude it may limit you. However, it's not limited me. I get out and about. I travel. I can do pretty much what I want, just not as long or as hard. I have certain things I can't do but most of those I can live fine without. Normally you'll find first the need for oxygen when sleeping and when exerting yourself. Maybe 2 lpm at first. Then you may progress where you're requiring 2 lpm at rest and 3 or 4 or 5 on exertion. The important thing for me was to understand I can have a lot more. Later it will be 6 or 8. Eventually as you hit 10 or more it becomes more difficult to get enough. At first you can take care of yourself as you always have. Then you hit a period in which there are certain things you need help for. I don't clean my own home anymore. I also don't carry heavy items (have a very nice cart for that). My mobility at this point is still good and I get out every day. Later, there are more things you need assistance on and getting out becomes more difficult. Just because it takes more time and effort though is no reason to stop it. You mention a chair. Well, I do own a powerchair although rarely use it yet. But, I know the time is I'll need it to enjoy getting out. If I went to Disneyworld I'd use it today. Or to the zoo. I used it to explore the Riverfront in Chattanooga last year. I know that ultimately I'll need it on more of my daily outings. Now, you want to guard against other things such as Pulmonary Hypertension. With PF only, most will eventually reach a stage over 10 lpm and with no mobility. But, the good part is your brain is still functioning well and you can live relatively free from pain due to hospice. At this point you're looking for pallative care. Knowing whats available provides me great comfort. You get someone experienced helping you and the amount of morphine necessary to relieve the pain. As to lifestyle, perhaps not what you dreamed of for yourself, but it can be very full. Develop things you enjoy (such as this forum) that don't require as much mobility. Make online friends or play cards online. Meanwhile get out as much as you can but have interests that when you can't get out you can still enjoy. I'm more advanced than you (my lung function was below 50% when I was diagnosed and is in the lower 40's depending on what measurement you use). I'm on anywhere from no oxygen sitting sometimes to 2 lpm sleeping to 3 lpm moving around the house to 4 lpm out to 5 lpm on the treadmill. My life is good. My quality of life is good. I take comfort in seeing those further along than I am still enjoying their lives. Not perfect. Not what they wished. But enjoying. Whether its sitting on the porch in a florida breeze or the latest project in Oregon or traveling. I also see those who are in hospice who are comfortable. They still are sharing time with their husbands and kids and grandkids and friends. Their hours per day they are doing so may be decreasing but its still there. Read one or two of Lou's recent posts and you'll see a woman very much alive with hospice. It's not just the morphine making her a bit crazy and so lovable though. She always was. She has a hospice nurse she very much likes and her dog and at night her husband and family other times. What this board is about more than anything is learning to live with the disease. For you at this point thats not difficult. But, you can do it at all stages. You didn't know before the diagnosis how long or what kind of life was left. You still don't. Use the diagnosis to tell you to focus on enjoying every day as much as possible. If there are things you especially want to do in your life, do them now. Don't say, I'll do that in a few years. A few years often never comes as we can continue to put it off. I have done things since diagnosis that I know I would have put off forever without. > > > > > Oh Bruce, please don't use the word " driver " in the same sentence > with > > > Colonoscopy- -LOL. > > > > > > > > > > > > > > > That is too funny! When I had mine done I told the doc he was > > boldly going where no man had gone before. > > > > jon > > 50, sarcoidosis 1/9 > > -- > > A little nonsense now and then is relished by the wisest men. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 have to agree; my brother told me it was the best sleep ever.. the drinking of the liquid was the hardest.. then when i was ready and in my gown my doc showed behind me. Yes, bare butt he saw and i asked him what he was doing back there and he said um i'm suppose to be here and i told him not while i was aware with that he said ok good night and i was out.. and woke up quite well rested.. lol.. patti, nj, ipf > > > > > > > Oh Bruce, please don't use the word " driver " in the same sentence > > with > > > > Colonoscopy- -LOL. > > > > > > > > > > > > > > > > > > > > > > That is too funny! When I had mine done I told the doc he was > > > boldly going where no man had gone before. > > > > > > jon > > > 50, sarcoidosis 1/9 > > > -- > > > A little nonsense now and then is relished by the wisest men. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 hunnybunnybinky, Are you on any kind of medication now? If so, what is it?Sent on the TELUS Mobility network with BlackBerryFrom: "hunnybunnybinky" Date: Thu, 19 Feb 2009 01:41:23 -0000To: <Breathe-Support >Subject: Re: Fw: Scare today , My Pulmo at Mayo had me on Prednisone and Cellcept for about 6 months. Testing proved that my IPF was still progressing. I was weaned off both medications. For some patients the treatment works and for some it doesn't. You and I have in common your issue of an elevated heart rate even at rest. Being your echo turned out fine I would urge you to inform your dr. of your findings. There are meds to help with your heart rate. Also, ask about your allergy/sinus meds. Certain types of theses medications can effect your heart rate. Mine was diagnosed as " tackicardia. " I am taking Cardizem CD 180mg 2x a day. It has helped tremendously! It's a good idea to start a list of issues and questions for your doctor. Your frequent urination, low SATS and high heart rate at rest are important topics to tackle. Knowledge is power. I wish you the best! 33 FL IPF dx 1/06 > > > > > > > > > Oh Bruce, please don't use the word " driver " in the same > sentence > > > with > > > > > Colonoscopy- -LOL. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > That is too funny! When I had mine done I told the doc he was > > > > boldly going where no man had gone before. > > > > > > > > jon > > > > 50, sarcoidosis 1/9 > > > > -- > > > > A little nonsense now and then is relished by the wisest men. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 the symptoms of my PF are responsive to prednisone last summer when 40 mgs took effect, i was all over the place, cleaned the house, went upstairs several times a day, couldn't sleep, etc then the weaning started, slowly, and the symptoms came back then the doc put me on cellcept to help control the symptoms while prednisone is weaned the goal is to get me down to 10 mgs prednisone in the meantime, prednisone induced diabetes appeared i find that the higher the prednisone level, the higher the glucose level in the meantime, i have been on O2 24/7 since last may when there was a significant change in my condition discuss everything that you told the group with your doctors, write it down, write down your questions and take notes when you go to the doctor Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 2:31 PM A couple of comments per your request. First, there is a big differencebetween BOOP and IPF and I don't know where the pathologists have beenfrom but I'd certainly recommend another review of your biopsy slides,preferably at one of the IPF Centers of Excellence where the Pathologistand the Pulmonologist will go over the findings together.Could you tell if your disease appeared to respond to the prednisone?BOOP generally does.You definitely need to get the urination issue checked. Have you gotdiabetes? Have you been checked since the high dosages of prednisone?If you're remaining at 92-93 for any time while lying then you may notbe getting enough oxygen then and certainly not while in activity. Whatare your saturations when you're moving and active? What you'redescribing could well be a normal progression of the disease. The oneother thing i would urge is an echocardiogram if you haven't had onerecently. Pulmonary Hypertension is always a risk and something to bewatched for.> > >> > > > Oh Bruce, please don't use the word "driver" in the samesentence> > with> > > > Colonoscopy- -LOL.> > > >> > >> > >> > >> > >> > >> > > That is too funny! When I had mine done I told the doc he was> > > boldly going where no man had gone before.> > >> > > jon> > > 50, sarcoidosis 1/9> > > --> > > A little nonsense now and then is relished by the wisest men.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 the symptoms of my PF are responsive to prednisone last summer when 40 mgs took effect, i was all over the place, cleaned the house, went upstairs several times a day, couldn't sleep, etc then the weaning started, slowly, and the symptoms came back then the doc put me on cellcept to help control the symptoms while prednisone is weaned the goal is to get me down to 10 mgs prednisone in the meantime, prednisone induced diabetes appeared i find that the higher the prednisone level, the higher the glucose level in the meantime, i have been on O2 24/7 since last may when there was a significant change in my condition discuss everything that you told the group with your doctors, write it down, write down your questions and take notes when you go to the doctor Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 2:31 PM A couple of comments per your request. First, there is a big differencebetween BOOP and IPF and I don't know where the pathologists have beenfrom but I'd certainly recommend another review of your biopsy slides,preferably at one of the IPF Centers of Excellence where the Pathologistand the Pulmonologist will go over the findings together.Could you tell if your disease appeared to respond to the prednisone?BOOP generally does.You definitely need to get the urination issue checked. Have you gotdiabetes? Have you been checked since the high dosages of prednisone?If you're remaining at 92-93 for any time while lying then you may notbe getting enough oxygen then and certainly not while in activity. Whatare your saturations when you're moving and active? What you'redescribing could well be a normal progression of the disease. The oneother thing i would urge is an echocardiogram if you haven't had onerecently. Pulmonary Hypertension is always a risk and something to bewatched for.> > >> > > > Oh Bruce, please don't use the word "driver" in the samesentence> > with> > > > Colonoscopy- -LOL.> > > >> > >> > >> > >> > >> > >> > > That is too funny! When I had mine done I told the doc he was> > > boldly going where no man had gone before.> > >> > > jon> > > 50, sarcoidosis 1/9> > > --> > > A little nonsense now and then is relished by the wisest men.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 the symptoms of my PF are responsive to prednisone last summer when 40 mgs took effect, i was all over the place, cleaned the house, went upstairs several times a day, couldn't sleep, etc then the weaning started, slowly, and the symptoms came back then the doc put me on cellcept to help control the symptoms while prednisone is weaned the goal is to get me down to 10 mgs prednisone in the meantime, prednisone induced diabetes appeared i find that the higher the prednisone level, the higher the glucose level in the meantime, i have been on O2 24/7 since last may when there was a significant change in my condition discuss everything that you told the group with your doctors, write it down, write down your questions and take notes when you go to the doctor Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 2:31 PM A couple of comments per your request. First, there is a big differencebetween BOOP and IPF and I don't know where the pathologists have beenfrom but I'd certainly recommend another review of your biopsy slides,preferably at one of the IPF Centers of Excellence where the Pathologistand the Pulmonologist will go over the findings together.Could you tell if your disease appeared to respond to the prednisone?BOOP generally does.You definitely need to get the urination issue checked. Have you gotdiabetes? Have you been checked since the high dosages of prednisone?If you're remaining at 92-93 for any time while lying then you may notbe getting enough oxygen then and certainly not while in activity. Whatare your saturations when you're moving and active? What you'redescribing could well be a normal progression of the disease. The oneother thing i would urge is an echocardiogram if you haven't had onerecently. Pulmonary Hypertension is always a risk and something to bewatched for.> > >> > > > Oh Bruce, please don't use the word "driver" in the samesentence> > with> > > > Colonoscopy- -LOL.> > > >> > >> > >> > >> > >> > >> > > That is too funny! When I had mine done I told the doc he was> > > boldly going where no man had gone before.> > >> > > jon> > > 50, sarcoidosis 1/9> > > --> > > A little nonsense now and then is relished by the wisest men.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 forgot to say that everyone on this board has had different experiences with prednisone some people will not take it no matter what some people are thankful that it exists even with its side effects it if relieves the symptoms then it is worth it to me Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 2:31 PM A couple of comments per your request. First, there is a big differencebetween BOOP and IPF and I don't know where the pathologists have beenfrom but I'd certainly recommend another review of your biopsy slides,preferably at one of the IPF Centers of Excellence where the Pathologistand the Pulmonologist will go over the findings together.Could you tell if your disease appeared to respond to the prednisone?BOOP generally does.You definitely need to get the urination issue checked. Have you gotdiabetes? Have you been checked since the high dosages of prednisone?If you're remaining at 92-93 for any time while lying then you may notbe getting enough oxygen then and certainly not while in activity. Whatare your saturations when you're moving and active? What you'redescribing could well be a normal progression of the disease. The oneother thing i would urge is an echocardiogram if you haven't had onerecently. Pulmonary Hypertension is always a risk and something to bewatched for.> > >> > > > Oh Bruce, please don't use the word "driver" in the samesentence> > with> > > > Colonoscopy- -LOL.> > > >> > >> > >> > >> > >> > >> > > That is too funny! When I had mine done I told the doc he was> > > boldly going where no man had gone before.> > >> > > jon> > > 50, sarcoidosis 1/9> > > --> > > A little nonsense now and then is relished by the wisest men.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 forgot to say that everyone on this board has had different experiences with prednisone some people will not take it no matter what some people are thankful that it exists even with its side effects it if relieves the symptoms then it is worth it to me Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 2:31 PM A couple of comments per your request. First, there is a big differencebetween BOOP and IPF and I don't know where the pathologists have beenfrom but I'd certainly recommend another review of your biopsy slides,preferably at one of the IPF Centers of Excellence where the Pathologistand the Pulmonologist will go over the findings together.Could you tell if your disease appeared to respond to the prednisone?BOOP generally does.You definitely need to get the urination issue checked. Have you gotdiabetes? Have you been checked since the high dosages of prednisone?If you're remaining at 92-93 for any time while lying then you may notbe getting enough oxygen then and certainly not while in activity. Whatare your saturations when you're moving and active? What you'redescribing could well be a normal progression of the disease. The oneother thing i would urge is an echocardiogram if you haven't had onerecently. Pulmonary Hypertension is always a risk and something to bewatched for.> > >> > > > Oh Bruce, please don't use the word "driver" in the samesentence> > with> > > > Colonoscopy- -LOL.> > > >> > >> > >> > >> > >> > >> > > That is too funny! When I had mine done I told the doc he was> > > boldly going where no man had gone before.> > >> > > jon> > > 50, sarcoidosis 1/9> > > --> > > A little nonsense now and then is relished by the wisest men.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 forgot to say that everyone on this board has had different experiences with prednisone some people will not take it no matter what some people are thankful that it exists even with its side effects it if relieves the symptoms then it is worth it to me Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 2:31 PM A couple of comments per your request. First, there is a big differencebetween BOOP and IPF and I don't know where the pathologists have beenfrom but I'd certainly recommend another review of your biopsy slides,preferably at one of the IPF Centers of Excellence where the Pathologistand the Pulmonologist will go over the findings together.Could you tell if your disease appeared to respond to the prednisone?BOOP generally does.You definitely need to get the urination issue checked. Have you gotdiabetes? Have you been checked since the high dosages of prednisone?If you're remaining at 92-93 for any time while lying then you may notbe getting enough oxygen then and certainly not while in activity. Whatare your saturations when you're moving and active? What you'redescribing could well be a normal progression of the disease. The oneother thing i would urge is an echocardiogram if you haven't had onerecently. Pulmonary Hypertension is always a risk and something to bewatched for.> > >> > > > Oh Bruce, please don't use the word "driver" in the samesentence> > with> > > > Colonoscopy- -LOL.> > > >> > >> > >> > >> > >> > >> > > That is too funny! When I had mine done I told the doc he was> > > boldly going where no man had gone before.> > >> > > jon> > > 50, sarcoidosis 1/9> > > --> > > A little nonsense now and then is relished by the wisest men.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Joyce,I went to see my GP today as the specialist is on vacation. As I am now down to 45mgs of Prednisone now and not breathing as well as I was, it was decided to go to 50mgs and monitor if things get better. I also had a chest x-ray for comparisons. I have been fortunate with really having no side effects other than the occasional day of Roid rage and bad sleep. I have not heard of cellcept. Sent on the TELUS Mobility network with BlackBerryFrom: Joyce T Rosenberg Date: Thu, 19 Feb 2009 12:27:55 -0800 (PST)To: <Breathe-Support >Subject: Re: Re: Fw: Scare today the symptoms of my PF are responsive to prednisonelast summer when 40 mgs took effect, i was all over the place, cleaned the house, went upstairs several times a day, couldn't sleep, etc then the weaning started, slowly, and the symptoms came back then the doc put me on cellcept to help control the symptoms while prednisone is weanedthe goal is to get me down to 10 mgs prednisone in the meantime, prednisone induced diabetes appearedi find that the higher the prednisone level, the higher the glucose level in the meantime, i have been on O2 24/7 since last may when there was a significant change in my condition discuss everything that you told the group with your doctors, write it down, write down your questions and take notes when you go to the doctor Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09www.transplantfund.orgFrom: Bruce Moreland <brucemoreland (AT) gmail (DOT) com>Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 2:31 PMA couple of comments per your request. First, there is a big differencebetween BOOP and IPF and I don't know where the pathologists have beenfrom but I'd certainly recommend another review of your biopsy slides,preferably at one of the IPF Centers of Excellence where the Pathologistand the Pulmonologist will go over the findings together.Could you tell if your disease appeared to respond to the prednisone?BOOP generally does.You definitely need to get the urination issue checked. Have you gotdiabetes? Have you been checked since the high dosages of prednisone?If you're remaining at 92-93 for any time while lying then you may notbe getting enough oxygen then and certainly not while in activity. Whatare your saturations when you're moving and active? What you'redescribing could well be a normal progression of the disease. The oneother thing i would urge is an echocardiogram if you haven't had onerecently. Pulmonary Hypertension is always a risk and something to bewatched for.> > >> > > > Oh Bruce, please don't use the word "driver" in the samesentence> > with> > > > Colonoscopy- -LOL.> > > >> > >> > >> > >> > >> > >> > > That is too funny! When I had mine done I told the doc he was> > > boldly going where no man had gone before.> > >> > > jon> > > 50, sarcoidosis 1/9> > > --> > > A little nonsense now and then is relished by the wisest men.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Joyce,I went to see my GP today as the specialist is on vacation. As I am now down to 45mgs of Prednisone now and not breathing as well as I was, it was decided to go to 50mgs and monitor if things get better. I also had a chest x-ray for comparisons. I have been fortunate with really having no side effects other than the occasional day of Roid rage and bad sleep. I have not heard of cellcept. Sent on the TELUS Mobility network with BlackBerryFrom: Joyce T Rosenberg Date: Thu, 19 Feb 2009 12:27:55 -0800 (PST)To: <Breathe-Support >Subject: Re: Re: Fw: Scare today the symptoms of my PF are responsive to prednisonelast summer when 40 mgs took effect, i was all over the place, cleaned the house, went upstairs several times a day, couldn't sleep, etc then the weaning started, slowly, and the symptoms came back then the doc put me on cellcept to help control the symptoms while prednisone is weanedthe goal is to get me down to 10 mgs prednisone in the meantime, prednisone induced diabetes appearedi find that the higher the prednisone level, the higher the glucose level in the meantime, i have been on O2 24/7 since last may when there was a significant change in my condition discuss everything that you told the group with your doctors, write it down, write down your questions and take notes when you go to the doctor Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09www.transplantfund.orgFrom: Bruce Moreland <brucemoreland (AT) gmail (DOT) com>Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 2:31 PMA couple of comments per your request. First, there is a big differencebetween BOOP and IPF and I don't know where the pathologists have beenfrom but I'd certainly recommend another review of your biopsy slides,preferably at one of the IPF Centers of Excellence where the Pathologistand the Pulmonologist will go over the findings together.Could you tell if your disease appeared to respond to the prednisone?BOOP generally does.You definitely need to get the urination issue checked. Have you gotdiabetes? Have you been checked since the high dosages of prednisone?If you're remaining at 92-93 for any time while lying then you may notbe getting enough oxygen then and certainly not while in activity. Whatare your saturations when you're moving and active? What you'redescribing could well be a normal progression of the disease. The oneother thing i would urge is an echocardiogram if you haven't had onerecently. Pulmonary Hypertension is always a risk and something to bewatched for.> > >> > > > Oh Bruce, please don't use the word "driver" in the samesentence> > with> > > > Colonoscopy- -LOL.> > > >> > >> > >> > >> > >> > >> > > That is too funny! When I had mine done I told the doc he was> > > boldly going where no man had gone before.> > >> > > jon> > > 50, sarcoidosis 1/9> > > --> > > A little nonsense now and then is relished by the wisest men.> > >> >> Quote Link to comment Share on other sites More sharing options...
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