Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 We had 56 people respond to a board survey on Prednisone. Now, 75% of those had been on prednisone. At the time of responding 43% were still on it with 33% seeing some benefit and 10% not. The main point is that its different for every two people in terms of both benefit and severity of side effects and it also varies based on form of PF and whether any autoimmune disease or not. Now, I have taken neither although both have been recommended I'm in a very different situation regarding them than most here. I am getting another opinion on whether I have an autoimmune disease or not and, if so, what it might be. I will have to readdress the issue. Therefore, I've read the responses here and researched extensively as well as listened to the doctors. Imuran is very powerful and can have side effects. The one my doctors said needed following closest was monitoring of liver enzymes for liver damage. Do a search on Imuran here and you'll see the other side effects people have had. The good news is that most of its effects can be monitored. It can be fairly easily withdrawn from if needed and the side effects generally reverse. 40Mg of Prednisone would be considered by most to be a medium dosage. Many start with 60 Mg and some with 80 Mg. The most common side effects include mood swings (which can range from anger to euphoria to depression and can be serious), weight gain, puffy face, weakening of bones, diabetes, thinning skin and easy bruising, and susceptability to germs, infection, colds, etc. These are important to know to look for them. Have those around you very aware that your moods might change and that might be significant. Plan in advance on needing to try everything possible to minimize your weight gain, avoid germs even more diligently than before and get antibiotics quickly at the least sign, get your bone density checked regularly, watch sugar and carbohydrate intake and get blood sugar checked regularly and checked for diabetes, and take the other prescribed medications needed to counteract some of these side effects. If you experience side effects, ask the doctor what might be done. For instance, if depression, maybe an anti-depressant will help. You will see those here who say they owe their lives to these two drugs and those who curse the day they ever saw them. Now, also, understand that if you have problems with prednisone deal with them quickly. Withdrawal early is difficult, later it's extremely slow and painful. The side effects of withdrawal can be as bad as those of being on it. I asked the question Friday if I was on it and saw after three weeks at 60 Mg I needed to come off how long would it take him to get me off. I was told six weeks, approximately. Now, if you've been on a year, it could take you a year or more to gradually get down and off. Some tolerate these medications quite well. Others have extreme difficulties. You've made the right move in learning in advance so you know what to look out for. Good luck and I hope you find the problems minimal and the results good. > > Hello, > > I am anticipating beginning Prednisone and Imuran next week following the pulmo appt. for the initial tx for PF. From what I understand this is the beginning tx with Prednisone at 40 mg. and Imuran at 150 mg. In the past I have taken Medrol Paks (Methylprednisolone) on two ocassions however they are only 4 mg. tabs with the 1st day at 6 tabs, 2nd day at 5, etc. to day 6 at 1 tab. I have felt better around day 5 for about a week or so. Side affects have been cystic acne and anxiety. > > As Imuran is new to me and the Predisone dose is much higher than I have ever taken I would appreciate hearing from others if my understanding of the initial tx of PF is correct and how others have tolerated these drugs. > > Thank you all for your support. > > 53, CA .PF 06-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 , I also have taken both drugs..read the database links at the bottom of these posts. Many of us have taken these drugs with many side-effects. We have all had different reactions...mostly negative!!! The two drugs are what have kept me stable however. If I needed to go back on the higher dose I probably would because stability is a good thing. The side effects are horrid...osteoporosis, cataracts, cognitive problems, shaky hands, sleeplessness, very thin skin, hair loss, mood swings and many others. I have NSIP that does respond favorably to Prednsone and Imuran.most forms of PF do not. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/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 keith andersen wrote: Hello, I am anticipating beginning Prednisone and Imuran next week following the pulmo appt. for the initial tx for PF. From what I understand this is the beginning tx with Prednisone at 40 mg. and Imuran at 150 mg. In the past I have taken Medrol Paks (Methylprednisolone) on two ocassions however they are only 4 mg. tabs with the 1st day at 6 tabs, 2nd day at 5, etc. to day 6 at 1 tab. I have felt better around day 5 for about a week or so. Side affects have been cystic acne and anxiety. As Imuran is new to me and the Predisone dose is much higher than I have ever taken I would appreciate hearing from others if my understanding of the initial tx of PF is correct and how others have tolerated these drugs. Thank you all for your support. 53, CA .PF 06-08 No virus found in this incoming message. Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.2/1523 - Release Date: 6/28/2008 7:00 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 I believe you will find that those with NSIP have had the best response and those with UIP the opposite. However, do understand that even the division of the disease into forms keeps changing and some here have had their diagnoses changed. Opinions are varied. For instance, my decision when told I had UIP was easy-no prednisone. Now, they say I may have an undetermined autoimmune disease and it may be the cause of my UIP. Therefore, the opinion is that prednisone may help me. I asked my rheumatologist on Friday the likelihood of certain things and got no answer other than " can " except when it came to whether it might slow down the PF and there he said I'd have to ask the pulmonologist, that he wasn't the expert there. I can win the lottery tonight (well, not really...don't play) or I can end up dead. Now I can say highly unlikely to both of those. But they doctors won't close the gap between 1% and 99%, just not impossible and not certain. > > > Hello, > > > > I am anticipating beginning Prednisone and Imuran next week following > > the pulmo appt. for the initial tx for PF. From what I understand > > this is the beginning tx with Prednisone at 40 mg. and Imuran at 150 > > mg. In the past I have taken Medrol Paks (Methylprednisolone) on two > > ocassions however they are only 4 mg. tabs with the 1st day at 6 tabs, > > 2nd day at 5, etc. to day 6 at 1 tab. I have felt better around day 5 > > for about a week or so. Side affects have been cystic acne and anxiety. > > > > As Imuran is new to me and the Predisone dose is much higher than I > > have ever taken I would appreciate hearing from others if my > > understanding of the initial tx of PF is correct and how others have > > tolerated these drugs. > > > > Thank you all for your support. > > > > 53, CA .PF 06-08 > > > > > > > > > >-----------------------------------------------------------------------\ - > > > > > >No virus found in this incoming message. > >Checked by AVG. > >Version: 8.0.101 / Virus Database: 270.4.2/1523 - Release Date: 6/28/2008 7:00 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Hi I have been on pred and imuran for many years. The side effects from pred that I have experienced are weight gain, anxiety and moodiness. When I have been on high doses of pred I've had a rediculously sweet tooth to a point that I just wanted to mainline sugar. I have always taken a calcium supplement as a precaution but have never had problems with bone denisity. I have recently started to take risedronate sodium, which again is a precautionary measure not for any problems. The imuran needs to be monitored regularly by monthly blood tests, but this is a small price to pay. I had missed a few blood tests and didn't know that my white cell count was dangerously low and ended up in hospital in isolation as I was in serious danger of catching infections. However, following attempts a few years ago to wean me off of them we do know that they both make a huge difference to me. My quality of life is much better on them. I hope this is of help to you, obviously, as with all drugs, peoples individual experiences will differ. Love Ze xx>> Hello,> > I am anticipating beginning Prednisone and Imuran next week following the pulmo appt. for the initial tx for PF. From what I understand this is the beginning tx with Prednisone at 40 mg. and Imuran at 150 mg. In the past I have taken Medrol Paks (Methylprednisolone) on two ocassions however they are only 4 mg. tabs with the 1st day at 6 tabs, 2nd day at 5, etc. to day 6 at 1 tab. I have felt better around day 5 for about a week or so. Side affects have been cystic acne and anxiety. > > As Imuran is new to me and the Predisone dose is much higher than I have ever taken I would appreciate hearing from others if my understanding of the initial tx of PF is correct and how others have tolerated these drugs.> > Thank you all for your support.> > 53, CA .PF 06-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 ... I want you to know I'm reading your posts and you have my support along with others. I can't respond to your questions 'cause I don't take any meds, know nothing about Imuran (except what I read here) and what I know about Prednisone keeps me from taking it....at least right now. I do wish you good results on everything you're doing! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Re: Predisone and Imuran , I also have taken both drugs..read the database links at the bottom of these posts. Many of us have taken thesedrugs with many side-effects.We have all had different reactions...mostly negative!!!The two drugs are what have kept me stable however. If I needed to go back on the higher doseI probably would because stability is a good thing.The side effects are horrid...osteoporosis, cataracts, cognitive problems, shaky hands, sleeplessness,very thin skin, hair loss, mood swings and many others.I have NSIP that does respond favorably to Prednsone and Imuran.most forms of PF do not. Z 64, fibriotic NSIP/o5/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 <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->keith andersen wrote: Hello,I am anticipating beginning Prednisone and Imuran next week following the pulmo appt. for the initial tx for PF. From what I understand this is the beginning tx with Prednisone at 40 mg. and Imuran at 150 mg. In the past I have taken Medrol Paks (Methylprednisolone) on two ocassions however they are only 4 mg. tabs with the 1st day at 6 tabs, 2nd day at 5, etc. to day 6 at 1 tab. I have felt better around day 5 for about a week or so. Side affects have been cystic acne and anxiety. As Imuran is new to me and the Predisone dose is much higher than I have ever taken I would appreciate hearing from others if my understanding of the initial tx of PF is correct and how others have tolerated these drugs.Thank you all for your support. 53, CA .PF 06-08 No virus found in this incoming message. Checked by AVG. Version: 8.0.101 / Virus Database: 270.4.2/1523 - Release Date: 6/28/2008 7:00 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Bruce... It's so good to see you posting again! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Re: Predisone and Imuran I believe you will find that those with NSIP have had the best responseand those with UIP the opposite. However, do understand that even thedivision of the disease into forms keeps changing and some here have hadtheir diagnoses changed. Opinions are varied. For instance, my decisionwhen told I had UIP was easy-no prednisone. Now, they say I may have anundetermined autoimmune disease and it may be the cause of my UIP.Therefore, the opinion is that prednisone may help me.I asked my rheumatologist on Friday the likelihood of certain things andgot no answer other than "can" except when it came to whether it mightslow down the PF and there he said I'd have to ask the pulmonologist,that he wasn't the expert there. I can win the lottery tonight (well,not really...don't play) or I can end up dead. Now I can say highlyunlikely to both of those. But they doctors won't close the gap between1% and 99%, just not impossible and not certain.>> > Hello,> >> > I am anticipating beginning Prednisone and Imuran next weekfollowing> > the pulmo appt. for the initial tx for PF. From what I understand> > this is the beginning tx with Prednisone at 40 mg. and Imuran at 150> > mg. In the past I have taken Medrol Paks (Methylprednisolone) on two> > ocassions however they are only 4 mg. tabs with the 1st day at 6tabs,> > 2nd day at 5, etc. to day 6 at 1 tab. I have felt better around day5> > for about a week or so. Side affects have been cystic acne andanxiety.> >> > As Imuran is new to me and the Predisone dose is much higher than I> > have ever taken I would appreciate hearing from others if my> > understanding of the initial tx of PF is correct and how others have> > tolerated these drugs.> >> > Thank you all for your support.> >> > 53, CA .PF 06-08> >> >> >> >>>----------------------------------------------------------\-> >> >> >No virus found in this incoming message.> >Checked by AVG.> >Version: 8.0.101 / Virus Database: 270.4.2/1523 - Release Date:6/28/2008 7:00 AM> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 >Hi , I have taken Imuran for over 8 years now. I first started at 100 mg daily in Nov. 99. Then to get me off or at least down from 40 mg of Prednisone, the doctor upped it to 200 mg daily. That's what I've taken since April 2000. I have had no side effects whatsoever, except skewing of some of my blood tests showing I am taking an immunosuppresant drug. I also am not a large person, just average size, so the Imuran dosage is plenty high. I am sure the doctor who originally put me on that dose just wanted to get me off such a high dose of Prednisone, and didn't expect me to be taking so much Imuran for so long. However, as other doctors have stated, " If it isn't broke, don't fix it. " Hope this helps you. Sherry , age 64, NSIP '98, bronchiectasis, pulmonary hypertension 2008, PBC > Hello, > > I am anticipating beginning Prednisone and Imuran next week following the pulmo appt. for the initial tx for PF. From what I understand this is the beginning tx with Prednisone at 40 mg. and Imuran at 150 mg. In the past I have taken Medrol Paks (Methylprednisolone) on two ocassions however they are only 4 mg. tabs with the 1st day at 6 tabs, 2nd day at 5, etc. to day 6 at 1 tab. I have felt better around day 5 for about a week or so. Side affects have been cystic acne and anxiety. > > As Imuran is new to me and the Predisone dose is much higher than I have ever taken I would appreciate hearing from others if my understanding of the initial tx of PF is correct and how others have tolerated these drugs. > > Thank you all for your support. > > 53, CA .PF 06-08 > 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.