Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 They did a blood test yesterday and part of it was to check my liver functions. He won't do anything until I get back from my vacation but he did say that I would have to have a blood test every month.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho From: Beverley Joy <sparrow_98367@ yahoo.com>Subject: bad newsTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 25, 2009, 10:33 PM Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 I want to go to the UWNC too but I need to get moved over there. If I made an appointment while I'm here I might not be able to get there for my appoinment. Especially if it was in October or after. Too much snow.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. IdahoSubject: Re: bad newsTo: Breathe-Support Date: Friday, June 26, 2009, 9:12 AM BJ... gosh I'm sorry to hear your dx. I have no suggestions about the drugs but someone will reply who does. I'm going to UWMC in Oct. I'm anxious/apprehensiv e to find just what kind of PF I have...... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! bad news Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Sher, I couldn't tell if you were asking me about the weight gain or not but I have gained 35 pounds.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Sher, the doctor found both in my bronchoscope.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009  BJ...was the bronc painful? I simply could not tolerate a 35# wt. gain! So I don't take prednisone except for a limited number of days. I hope my back is never against the wall to HAVE to take it. I'm sure you dislike the wt. gain. DAMNIT! This disease stinks! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: bad news Sher, the doctor found both in my bronchoscope.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Beverley, It's not unusual to have a combination of UIP and NSIP. You are far from alone. My experience with Immuran is limited so far but good. I have an auto-immune condition called dermatomyositis. For this I have been treated for several months on Immuran. I had some initial side effects, nausea, fatigue and so forth until my body acclimated. From about the 2nd or 3rd week I had no further difficulties and it definitely helped reduce the symptoms of the dermatomyositis. I had to have bloodwork done once a month to check my liver function. Some people do not tolerate Immuran well and it causes problems with their liver. In that case the drug is stopped and the problem goes away. The doctors took me off the Immuran when I had the flu last month. I expect to go back on it in a week or so. I don't know anyone who had horrible side effects from Imuran. I do know people who could not take it because of the liver issue but I don't know anyone who suffered with bad side effects and I do know people who have been on it literally for years with no problems at all. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, June 25, 2009 10:33:30 PMSubject: bad news Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Sher, No, the bronch wasn't painful. They put me to sleep and I didn't have any after effects. My weight finally seems to have leveled off but if I have to take more Prednisone it will probably take off again. I am going on vacation Wednesday for three weeks. I won't be changing anything until I get back. You are right. This disease stinks. I am so depressed today. I wasn't expecting a progression so soon.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Thank you, Beth. I've heard so much bad about Imuran that it had me worried. They won't start me on it until I get back from my vacation if my blood tests show that it is safe for me to take. It's nice to be able to talk to someone who knows about it.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. IdahoSubject: Re: bad newsTo: Breathe-Support Date: Friday, June 26, 2009, 12:41 PM Beverley, It's not unusual to have a combination of UIP and NSIP. You are far from alone. My experience with Immuran is limited so far but good. I have an auto-immune condition called dermatomyositis. For this I have been treated for several months on Immuran. I had some initial side effects, nausea, fatigue and so forth until my body acclimated. From about the 2nd or 3rd week I had no further difficulties and it definitely helped reduce the symptoms of the dermatomyositis. I had to have bloodwork done once a month to check my liver function. Some people do not tolerate Immuran well and it causes problems with their liver. In that case the drug is stopped and the problem goes away. The doctors took me off the Immuran when I had the flu last month. I expect to go back on it in a week or so. I don't know anyone who had horrible side effects from Imuran. I do know people who could not take it because of the liver issue but I don't know anyone who suffered with bad side effects and I do know people who have been on it literally for years with no problems at all. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 25, 2009 10:33:30 PMSubject: bad news Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Sher, Until recently (when the edema started )I have gained and lost the same 7 pounds for 4 years! Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “*I’m gonna be iron like a lion in Zion” Bob Marley* *Vinca Minor-periwinkle is my flower* Sher Bauman wrote: > > > */BJ....for ...do you have the weight gain so many seem to > have as a side effect?* > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > * Re: bad news > > *Beverly Joy*, I've been taking both Prednisone and Imuran for 4 > years.... > The Prednisone dose went from 40 to 10 over that time and the > Imuran went from 100 to 50. I > I have most of the miserable side effects of Prednisone and none > of the problems of Imuran. I get monthly > bloodwork because of the Imuran and Prednisone. But I HAVE BEEN > STABLE since DX!!! > I will always be on these meds and many others to counteract the > side effects...but I'M HERE!!!! > > > Z 65, fibriotic NSIP/05/PA > > > And “mild” PH/10/07 and Reynaud’s too!! > > No, NSIP was not self-inflicted…I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > > “*I’m gonna be iron like a lion in Zion” Bob Marley* > > *Vinca Minor-periwinkle is my flower* > > > > > > Beverley Joy wrote: >> >> Hello everyone, >> >> I went to see my pulmo doc today. I just went to find out for >> sure what kind of PF I have. I have a combination of UIP and >> NSIP. My lungs have gotten worse in the last two months. He took >> a blood test to see if I can take Imuran. I guess that I can add >> Imuran to the Prednisone or up the dosage of Prednisone. Since I >> am having so many side affects from the Prednisone I think that >> he thinks that I should take the Imuran but he doesn't like >> giving it to anyone because it has worse side affect. Does anyone >> have any suggestions about this? >> >> Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 ... I do the same thing! But at least we aren't adding pounds each time. Keep on keepin' on. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! * Re: bad news>> *Beverly Joy*, I've been taking both Prednisone and Imuran for 4> years....> The Prednisone dose went from 40 to 10 over that time and the> Imuran went from 100 to 50. I> I have most of the miserable side effects of Prednisone and none> of the problems of Imuran. I get monthly> bloodwork because of the Imuran and Prednisone. But I HAVE BEEN> STABLE since DX!!!> I will always be on these meds and many others to counteract the> side effects...but I'M HERE!!!!>>> Z 65, fibriotic NSIP/05/PA>>> And “mild” PH/10/07 and Reynaud’s too!!>> No, NSIP was not self-inflicted…I never smoked!>> Potter, reader,carousel lover and MomMom to Darah and Sara>> “*I’m gonna be iron like a lion in Zion” Bob Marley*>> *Vinca Minor-periwinkle is my flower*>>>>>> Beverley Joy wrote:>>>> Hello everyone,>>>> I went to see my pulmo doc today. I just went to find out for>> sure what kind of PF I have. I have a combination of UIP and>> NSIP. My lungs have gotten worse in the last two months. He took>> a blood test to see if I can take Imuran. I guess that I can add>> Imuran to the Prednisone or up the dosage of Prednisone. Since I>> am having so many side affects from the Prednisone I think that>> he thinks that I should take the Imuran but he doesn't like>> giving it to anyone because it has worse side affect. Does anyone>> have any suggestions about this?>>>> Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho>>>>> ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 on 10 mgs prednisone i gained about 15 lbs since counting carbs due to diabetes, and still on 10 mgs prednisone, i lost 15 -20 pounds Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: bad newsTo: Breathe-Support Date: Friday, June 26, 2009, 1:15 PM  BJ...was the bronc painful? I simply could not tolerate a 35# wt. gain! So I don't take prednisone except for a limited number of days. I hope my back is never against the wall to HAVE to take it. I'm sure you dislike the wt. gain. DAMNIT! This disease stinks! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: bad news Sher, the doctor found both in my bronchoscope.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 I guess I have to figure out what doesn't have carbs. I think that I would do better if I could cook on my range.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009  BJ... I was told that if a person can't follow a carb diet then simply cut EVERYTHING eaten in HALF. If one eats a donut, eat half. I wonder if that really would work...he lost wt and that's about what I do...cut everything in half and I lose 8--10 pounds and then put it back on. No change in eating. Sure I 'cheat' occasionally but having nearly no appetite helps what I eat. I think a 15-20 # wt loss is terrific BJ. Good for you! What's happening with your house? MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: bad news I guess I have to figure out what doesn't have carbs. I think that I would do better if I could cook on my range.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 Sher, I don't think that I could cut my food in half. I have never been a heavy eater. It wasn't me who lost the weight. I wish it was. I am lowering the price on my house again. Someone is coming to do the weed eating today. I think that should help a lot.Beverley Joy, 71, UIP,NSIP, Diabetes, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Beverely you need some carbs, so count them if you eat a sandwich, eat one slice of bread instead of two -- make it open face measure your cereal, rice, pasta, bread, dairy products, etc read all labels and "limit" the carbs you need to ask your doc for help with a carb counting program Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: bad newsTo: Breathe-Support Date: Saturday, June 27, 2009, 12:11 AM I guess I have to figure out what doesn't have carbs. I think that I would do better if I could cook on my range.Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Hello everyone,I went to see my pulmo doc today. I just went to find out for sure what kind of PF I have. I have a combination of UIP and NSIP. My lungs have gotten worse in the last two months. He took a blood test to see if I can take Imuran. I guess that I can add Imuran to the Prednisone or up the dosage of Prednisone. Since I am having so many side affects from the Prednisone I think that he thinks that I should take the Imuran but he doesn't like giving it to anyone because it has worse side affect. Does anyone have any suggestions about this?Beverley Joy, 71, UIP,NSIP, Sjogren's, Fibromyalgia. Idaho Quote Link to comment Share on other sites More sharing options...
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