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  1. Janey - thanks so much for sharing. I also need to give Jo a belated thanks for the info. she provided. That is the only professional recommendation anyone has provided me (i.e. taking mycophenolate 2 hours before or 4 hours after an antacid). I have settled in to an almost identical regime as yours although I stretch out my mycophenolate a little further given the post 4 hour antacid advice. I find that can be a scheduling headache especially at night. Your response is reassuring and again shows I might be worrying too much. A lot happened since my original post and I'd like to share in case I can help others with a similar question. When I discussed the absorption concern with my rheumatologist, we agreed to up my mycophenolate dosage from 2 g a day to 2.5 g to help compensate for any absorption issue. While still below the recommended maximum of 3 g per day, I had a bad reaction to the half gram increase. I gained 10 pounds almost overnight (fluid retention) and had extreme swelling in my extremities below my waist, especially in my joints. I felt horrible! Coincidentally, my rheumatologist called to discuss my recent lab results and an upcoming Rituxan infusion and requested that I reduce my mycophenolate dosage to 1 g per day in preparation for the infusion. My weight gain and swelling disappeared within 2 days of reducing my daily dosage. I have to assume the reaction was related to the mycophenolate increase, ironically all because I worried about impaired absorption. I remain on 1 g of mycophenolate daily with no problem and I have my second Rituxan infusion tomorrow. Now I'm hoping for an encouraging PFT in June. I know this disease and associated medications can effect everyone differently, just thought I'd pass this along for info. I really appreciate everyone's help and support as I stumble through this relatively new phase in my life. Thanks to all of you! Speros
  2. Thanks Shelley. I think you're right. I just get too buried in the details. The lower strength of the enteric-coated version was of concern, but I guess my rheumatologist can figure out how to make up the difference. I'm putting a lot of faith in this drug to keep me breathing. I sure hope it works! Thanks again for your read on this! Speros
  3. I discussed the 2012 paper published in the Journal of Clinical Pharmacology "Omeprazole impairs absorption of mycophenolate mofetil but not of enteric-coated mycophenolate sodium in healthy volunteers" with my doctors and pharmacist. I am currently taking both mycophenolate mofetil (MMF)and omeprazole (proton pump inhibitor) twice a day for problems associated with diffuse systemic sclerosis. I'm especially concerned about any reduced efficacy of MMF as it relates to holding my interstitial lung disease in check. All of the health care professionals didn't seem too concerned about this drug interaction as long as I separated the doses of MMF and omeprazole. Maybe I worry too much or that I'm being too scientific, but I'd sure like to know what the ph of my stomach is during the times I take my meds (the journal article cites reduced absorption above ph 4.5). I currently separate the timing of these two medications while trying to follow the MMF guidelines to dose 1 hour before and 2 hours after a meal, another absorption complication. Has anyone had a similar concern and if so how do you take your medications (timing to separate MMF and omeprazole)?
  4. Hello: I was diagnosed with rapidly progressing diffuse systemic sclerosis in December 2015. My diagnosis was based on clinical symptoms, chronic Raynaud's, lung involvement (interstitial lung disease), thickened skin over most of my body, and esophageal involvement. Ironically, I tested negative for Anti-SCL70, ANA, rheumatoid factor, and other tests indicative of scleroderma. I too was confused although my doctors tell me this is not uncommon. Regardless, there's no mistaking my condition based on my clinical symptoms. I'm on month two of treatment with mycophenolate and prednisone. I hope they work! Best of luck to you as you deal with your condition. Know you're not alone. Speros
  5. Speedo


    I started Mycophenolate on December holiday 2015 after getting steam-rolled by rapidly progressing diffuse systemic sclerosis. Surprising when I think back to where I was 8 months ago. Now I'm hoping that my meds work. Some of your comments have strengthened my optimism. I had slight elevated liver enzymes early on but now my labs are all normal taking 1 gram of mycophenolate twice daily. Joelf, I'm intrigued by your comment about altering the course of your medication to accommodate hip replacement surgery. Coincidentally, I plan to initiate discussions with my doctors (my general practitioner, rheumatologist, and pulmonary specialist, all who I see next month) to see if having left shoulder replacement surgery is possible given my scleroderma that includes lung and probable esophageal (I have an endoscopy scheduled next month too) involvement. I had my right shoulder replaced in 2014 with no complications although that was prior to my systemic sclerosis diagnosis. My left shoulder definitely has become a quality of life issue. I'm not sure if my systemic sclerosis has contributed to it's deterioration, but regardless I need to get it fixed. Of course I need to talk to my orthopedic surgeon as well. Hopefully my tight skin won't pose a problem. Can I assume that it is possible to have major surgery while being treated for diffuse systemic sclerosis?
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