Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi, Jo Ann I was scared silly to get on Imuran after reading side effects. I have had two severe drug reactions in the last year, so I'm paranoid. I even postponed taking it for a week because I was going to a week-long workshop and didn't want to be vomiting or having stomach issues. I took 100mgs for 3 weeks with absolutely no problems. Just make sure you eat before you take the pill. I am now up to 150mgs after 4 weeks. I did take one the other night without eating very much and my stomach started burning. My feet and hands also started swelling when I started taking Imuran, but I'm also on Prednisone, so who knows. I think it will be fine for you. I guess other people here have taken Cellcept and Imuran together, but that's not something I have heard. I also have Sjogren's, and know it's a mean little disease. I'm so sorry you suddenly have so much to deal with. It is like a full-time job in itself when you suddenly have to deal with three or four diseases, all the drug management, and coping with the emotional issues that come with all the shocking news. Since you do have autoimmune diseases diagnosed, your UIP could possibly be changed to NSIP and more responsive to immunosuppressants. Good luck to you, Jo Ann! /52/TX Sjogren's, Raynaud's,NSIP dx 4/08 Subject: Drug Side EffectsTo: Breathe-Support Date: Tuesday, July 22, 2008, 6:56 PM Hi EveryoneI need some help.I have been going to Univ of MI Hospital. Saw Pulminologist in June. He thought I might have Sclaraderma, sent me to a Rheumotologist. Saw her on July 14th. She sid I do have Sclaraderma and also Sjogren's. She did more blood work. I go see the Pulminologist on Aug 4th. She is going to recomend that the Pulmo put me on Imuran and also Cellcept.I have seen posts from others that are on Imuran, but haven't seen anything about Cellcept.The thing I need help on is side effects of these drugs. I have read that Imuran causes Nausea. How bad I need to know.My Employer is giving me a really hard time about taking off from work to go to the doctors all the time. I have to show proof that I have an appt. I don't think they will let me miss work for nausea. Am I even going to be able to work while taking these drugs.Please HelpJo AnnUIP 9/07Slacaderma 7/08 Sjogren 7/08MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi Joanne. I have not taken Imuran, but I do take Cellcept and have for the past 3 years to manage my graft vs host disease from bone marrow txps. A therapeutic dose is 1000mg twice a day, but due to my waiting for lung txp it has been decreased to just 500mg once a day. I have never had a problem with the Cellcept...no sides effects at all. However, Cellcept is known to cause GI issues particularly loose stools. I again have never had an issue with it at all. It seems to me that not everyone reacts the same to medications. I take all of my meds with milk to coat my stomach. I have friend who is a pharmacist who says that it is not recommended, however if it works for me then great. I am not a breakfast eater so taking morning meds with milk has been a lifesaver! I then eat a midmorning snack when I'm hungry. Good luck to you. Jen Acute Myelogenous Leukemia 04/08, Allo Bone Marrow Transplants from brother 08/98 & 10/98, IPF due to chemo/radiation 08/06. STL, MO waiting for txp typically reside in Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Joanne: I almost forgot...there is another drug called Myfortic. Myfortic works like Cellcept but is broken down in the small intestine and has less GI effects. This is a new drug, and can be pricey if not on your insurance formulary. I stick w/ Cellcept b/c it works for me. I have friends who take Myfortic. Jen Acute Myelogenous Leukemia 04/08, Bone Marrow txps 08/98 & 10/98, IPF due to chemo/radiation 08/06. STL, MO waiting for txp. Typically reside in Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi Joann, Welcome! I'm sorry you are dealing with so much at the moment. I know how overwhelming and frightening it all feels. I've not ever taken either Immuran or Cellcept so I'm not very much help in that regard. I know that we have members who have taken both drugs and members who cope with both Scleroderma and Sjorgren's. Ugly diseases both. To have your employer adding to your stress is just adding insult to injury. I haven't worked in my former capacity since my diagnosis. I have been on SSDI for over a year and a half. Your ability to work while being treated with these meds will depend alot on your bodies tolerence and the way you react to the meds. That can be notoriously difficult to predict. I remember my Grandmother while being treated with both chemo and radiation for breast cancer carried on as though nothing was happening. The only sign of anything unusual was she lost her hair. My ex-husband on the other hand would take to his bed for a week if he got a head cold. Everyone is different. I hope you get the information you need and find support and friendship here also! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Drug Side Effects Hi EveryoneI need some help.I have been going to Univ of MI Hospital. Saw Pulminologist in June. He thought I might have Sclaraderma, sent me to a Rheumotologist. Saw her on July 14th. She sid I do have Sclaraderma and also Sjogren's. She did more blood work. I go see the Pulminologist on Aug 4th. She is going to recomend that the Pulmo put me on Imuran and also Cellcept.I have seen posts from others that are on Imuran, but haven't seen anything about Cellcept.The thing I need help on is side effects of these drugs. I have read that Imuran causes Nausea. How bad I need to know.My Employer is giving me a really hard time about taking off from work to go to the doctors all the time. I have to show proof that I have an appt. I don't think they will let me miss work for nausea. Am I even going to be able to work while taking these drugs.Please HelpJo AnnUIP 9/07Slacaderma 7/08 Sjogren 7/08MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Joann, I have taken Imuran for three years...no problems at all with nausea. Actually no side effects I'm aware of because I've also been on Prednisone at the same time and it has enough side effects all by itself! You will have to be aware that it can harm the liver..I have monthly blood work ( liver panel) to keep sure that all is OK. 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 joann10691410 wrote: Hi Everyone I need some help.I have been going to Univ of MI Hospital. Saw Pulminologist in June. He thought I might have Sclaraderma, sent me to a Rheumotologist. Saw her on July 14th. She sid I do have Sclaraderma and also Sjogren's. She did more blood work. I go see the Pulminologist on Aug 4th. She is going to recomend that the Pulmo put me on Imuran and also Cellcept. I have seen posts from others that are on Imuran, but haven't seen anything about Cellcept. The thing I need help on is side effects of these drugs. I have read that Imuran causes Nausea. How bad I need to know. My Employer is giving me a really hard time about taking off from work to go to the doctors all the time. I have to show proof that I have an appt. I don't think they will let me miss work for nausea. Am I even going to be able to work while taking these drugs. Please Help Jo Ann UIP 9/07 Slacaderma 7/08 Sjogren 7/08 MI No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.3/1565 - Release Date: 7/21/2008 6:36 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Jo Ann: I also have scleroderma - (specifically diffuse systemic scleroderma) that is effecting only my organs. I did 6 months of chemo (cyclophosphamide) infusions from June 2007 to Dec 2007 at RWJUH in NJ but the long term effects were disappointing - only six months after the chemo ended the disease is again showing lung progression. So the next course of defense is Cellcept. I have been on it only 1 month and it really hasn't bothered me much - I do find it difficult to schedule the doses though because it must be taken w/o food (2 hours after and 1 hour before eating). I noticed you said you are at the Univ of MI hospital - they have one of the few scleroderma centers in the US. If you haven't been there, I would strongly recommend that you call them. Here is a link: www.med.umich.edu/scleroderma/ I go to the center in NJ and found the doctors have the best overall knowledge of the disease and what to expect. It's complicated because scleroderma effects so many organs and does not follow any expected course. I don't post often but if I can provide any help, please do not hesitate to email me. Dunn, NJ dSSc, PHGet fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hi Jo Ann, I'm on imuran and I've never felt nauseous on it. The side effects I have had are a lowering of the neutrophiles and I was in hospital with neutropenic sepsis, in isolation which wasn't great. It had got that far as I had got blase about my blood tests and I had been given some antibiotics that had knocked me out of kilter from a few different angles. However I'm sure it wouldn't have got that bad if I'd been a good girl and had my blood tests done. I've learned my lesson there, honest guv! I hope this is of help to you Love Ze xx>> Hi Everyone> I need some help.I have been going to Univ of MI Hospital. Saw > Pulminologist in June. He thought I might have Sclaraderma, sent me > to a Rheumotologist. Saw her on July 14th. She sid I do have > Sclaraderma and also Sjogren's. She did more blood work. I go see > the Pulminologist on Aug 4th. She is going to recomend that the > Pulmo put me on Imuran and also Cellcept.> > I have seen posts from others that are on Imuran, but haven't seen > anything about Cellcept.> > The thing I need help on is side effects of these drugs. I have read > that Imuran causes Nausea. How bad I need to know.> My Employer is giving me a really hard time about taking off from > work to go to the doctors all the time. I have to show proof that I > have an appt. I don't think they will let me miss work for nausea. > Am I even going to be able to work while taking these drugs.> > Please Help> Jo Ann> UIP 9/07> Slacaderma 7/08 Sjogren 7/08> MI> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Jo Ann ... I want to acknowledge your post but I can't be of any help since I don't take these meds. I'm thinking everyone is different however, and one may have severe side effects and another hardly any...at least that's what I read on the board from those who do take these meds. It's so hard, isn't it, to have this disease and still hold a job. Employer's (SOME) are not very tolerant,even over what we cannot help. Hugs to you MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Drug Side Effects Hi EveryoneI need some help.I have been going to Univ of MI Hospital. Saw Pulminologist in June. He thought I might have Sclaraderma, sent me to a Rheumotologist. Saw her on July 14th. She sid I do have Sclaraderma and also Sjogren's. She did more blood work. I go see the Pulminologist on Aug 4th. She is going to recomend that the Pulmo put me on Imuran and also Cellcept.I have seen posts from others that are on Imuran, but haven't seen anything about Cellcept.The thing I need help on is side effects of these drugs. I have read that Imuran causes Nausea. How bad I need to know.My Employer is giving me a really hard time about taking off from work to go to the doctors all the time. I have to show proof that I have an appt. I don't think they will let me miss work for nausea. Am I even going to be able to work while taking these drugs.Please HelpJo AnnUIP 9/07Slacaderma 7/08 Sjogren 7/08MI Quote Link to comment Share on other sites More sharing options...
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