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    • #20568
      Mark Koziol
      Keymaster

      Quite often I have read some of our forum members are taking mycophenolate also known generically as cellcept. Oftentimes, physicians combine the cellcept with a prescription of prednisone.  Both of these medicines are prescribed to combat the inflammation occurring in our lungs from the fibrosis, and can be used to treat other autoimmune diseases as well. Each doctor has his or her own preference for treating the fibrosis, and subsequent inflammation. Before I was transplanted I was not prescribed either of these medicines. Hearing that others were on these medicines after starting to participate on various forums and online support groups kind of startled me. My doctor explained to me that since I was most likely going to be listed for a lung transplant, he did not want to introduce me to prednisone.

      Prednisone and cellcept are frequently prescribed to lung transplant patients and are both immunosuppressive medications. I currently take 5mg of prednisone and have been prescribed a prednisone taper several times because of different viruses and an acute rejection episode. The taper would start me at 40mg for 5 days, 30mg for 5 days and so on until I was back down to my 5mg dosage. I was also placed on cellcept for several months but was taken off because of a decreasing white blood cell count.

      Unfortunately, many patients are not given clear directives on why they have been prescribed or what they are used for. One of my favorite websites; Pulmonary Fibrosis Foundation offers fact sheets on both of these medicines. The sheets are easy to read and informative.

      Prednisone

      Mycophenolate

      Did your physician give clear and concise directives on why you are taking prednisone or cellcept?

      Have you suffered any side effects from using these medicines?

    • #20602
      Denyse P Browne
      Participant

      Diagnosed February 7, 2017 with NSIP at UCSF. Lung capacity at 33%. Put immediately on 40 mg Prednisone and 2000 mg CellCept (1000 AM, 1000PM) for one year. Bedridden or move about with 5liters Oxygen 24/7.  Within one year lung capacity improved to 55%. Used portable oxygen concentrator for next 6 months and titrated down on Prednisone to 0. Remained on 2000 CellCept. Then began to titrate down on CellCept slowly. Now am at 1000 daily ( 500 AM, 500 PM)  lung capacity has increased to 78%. No longer on oxygen during day. Use 2L 0 at night connected to my CPAP machine. Have permanent fibrotic scarring but can lead a fairly normal life by pacing myself. My type of NSIP is genetic. Put on 40 lbs. with Prednisone but lost all in 3 months by following strict anti-inflammatory diet. Also benefitted from acupuncture during the first half of second year. Hope this info is helpful.

      • #20603
        Mark Koziol
        Keymaster

        Hello Denyse, thank you very much for reading and commenting. It as always good to hear when our fellow pf siblings are improving their lung function. I am also happy you are on top of your medication regimen. This is an important piece of maintaining or improving your health. Thank you for telling your story. Best wishes, I hope you continue to improve. Mark

      • #20650
        Keith Nelson
        Participant

        Great news Denyse!  Thank you for sharing.

        I was first diagnosed January 4, 2019 with IPF – Physican’s Assistant immediately recommended ofev. I demurred. My Primary Care Physician suggested we get a second opinion. My lung capacity was measured at 21% of predicted. Not a great place to “start” – but we do not get to choose!  On April 26 the Instructor, scientist, PhD, MD at our local research and teaching university was able to refine (trying to be nice, rather than…) my diagnosis to Nonspecific Interstitial Pneumonia, from the January 4 diagnosis of Idiopathic Pulmonary Fibrosis.

        On May 1 I started at 1000mg Mycophenolate Mofetil and 40mg of Prednisone. On June 15 the Mycophenolate Mofetil was ramped up to 2000mg daily. On July 31 we dropped down to 10mg of Prednisone. It has been going relatively well, all things considered. I have had the insomnia and some occasional cramping, but have been able to control/endure those side effects. Curiously, with the Prednisone I have not gained a pound – which would have been helpful in my particular case.

        I walk every day. The Dr.’s have cautioned me to keep my heart rate in the training range, rather than my propensity to work to the max heart rate on these walks. I am not on supplemental O2, and have not experienced the need for that, thankfully. I do get the discoloration on my fingertips and can tell when my O2 level is diminishing, but if I slow down, let my body recover the discoloration goes away.

        I head back to the university on the 23rd for the once-over-greatly again to check how well the drugs and my lungs are working. If it never gets any worse than I presently am, it would be wonderful!

        • #20653
          Mark Koziol
          Keymaster

          Hello Keith, thank you as well for sharing. Keith please watch your oxygen saturation. When your oxygen level drops below 88% there is a possibility of you causing damage to your organs. Try to use an oximeter when you plan to exert yourself to avoid going under the required o2 level. Wish you well on your next appt. Mark.

    • #20647
      Wendy Dirks
      Participant

      My father was on prednisone for some time with IPF 30 years ago. My doctors won’t put me on it because I am fat and they don’t want me to gain any more weight. I’m back at the hospital for lung function tests tomorrow and a meeting with my consultant. I’ve been told that if my lung function declines again, I’ll have another scan and the next step is immunosuppressant drugs. I’m not looking forward to that. I have this terrible fear that if I’m on them, I’ll be confined to home completely to avoid bugs and a debilitating chest infection. I have hypersensitivity pneumonitis, not IPF but any information on what it is like on these drugs is appreciated.

      • #20649
        Mark Koziol
        Keymaster

        Hello Wendy, thanks for commenting. Everyone will have different experiences. I have been on the prednisone since my transplant and I have maintained my weight. I also have not experienced any other noticeable side effect. I know some people gain weight but it’s from your increased appetite from the medicine. Just because you are on immunosuppressive medicines does not mean you have to live in a bubble. If you take some precautions you can avoid constant illness. I was on cellcept for a very short time and I didn’t feel any different. I hope this helps. Best wishes, Mark.

    • #20651
      Wendy Dirks
      Participant

      Thanks, Mark! I’ve heard that before about prednisone and I will discuss it again if my lung function declines. Over the last year my appetite has decreased remarkably but so has my activity and so my weight remains the same. I’m hoping that my lung function hasn’t declined much over the last three months and I can carry on as usual for now. I find myself becoming full of anxiety before these checkups but I’m trying to stay positive.

      • #20652
        Mark Koziol
        Keymaster

        Hello Wendy, stay positive. Ask your doctor if he will prescribe a pulmonary rehab program. This should help with your activity level. Mark

    • #20659
      Coreeta Mays
      Participant

      I’ve been on Mycophenolate and prednisone for about a year now. My treatment was prescribed by my rheumatologist to treat my lupus. It’s believed that my PF is a result of my immune system attacking my lung . I started on 3000mg of Mycophenolate per day and 40mg of prednisone. I’m currently on 2000mg of Mycophenolate and 25mg of prednisone. I’m hoping to be able to get down to 5mg of prednisone over time in order to alleviate some of the side effects.

      • #20663
        Mark Koziol
        Keymaster

        Hello Coreeta, thank you for sharing your experience with these medicines. I hope your inflammation subsides and you are tapered down to 5mg as well. I currently take this dosage and have not experienced any side effects. Keep us updated, best wishes. Mark

      • #20866
        Cynthia
        Participant

        Has it halted the progression of your PF?

    • #20658
      Wendy Dirks
      Participant

      Thanks, Mark – I’m one of the British Lung Foundation’s stars in their pulmonary rehabilitation videos that play in doctors’ offices! 😂 I go to a “Healthy Lungs” followup class but this summer I have been inundated with research deadlines and spent way too much time sitting and staring at computer screens. 🙁

      https://youtu.be/LIxfiDcE_L4

      • #20662
        Mark Koziol
        Keymaster

        Hello Wendy, that’s great. Hopefully you can back into your fitness routine soon. I know the feeling of too much work, even though it’s not physical work it is just as draining on the body. Mark

    • #20733
      Wendy Dirks
      Participant

      Hello, everyone – I saw one of the team at the Interstitial Lung Disease Clinic yesterday and my hypersensitivity pneumonitis continues to progress so the next step will be treatment with mycophenolate alone, without prednisone. The doctor spent a long time explaining the possible side effects and the need for close monitoring. She also told me that I would not feel better, but that their goal was to keep me stable. She said most people tolerate mycophenolate well but the two side effects are nausea and fatigue. I already have fatigue and I’m not eager to become Rip van Winkle! Do any of you have any side effects? Any advice you have for me? Warnings or positive experiences? She told me she wanted to keep my lungs working for the next 20 years! She said for that reason, they don’t want me on prednisone because the side effects over the long haul aren’t good and they think I’m in for the long haul!

      Thinking I might last another 20 years had got me thinking I need to make more of an effort to live a healthier lifestyle. I have to admit that I don’t really try at the moment. My attitude has been eat, drink, and be merry, for tomorrow you die.

      I always leave the appointments feeling crushed because my illness is progressing but I always wake up the next day feeling a sense of hope. Anybody else have this reaction?

      Best wishes,

      Wendy

       

      • #20746

        Hi Wendy,

        Thanks for summarizing your doctor’s visit! I know hearing that your disease is progressing can be so disheartening and gut-wrenching, sadly, I’ve experienced this too. That said, glad your doctors are committed to 20 years out of your lungs, let’s hope they achieve this! It sounds like you have a great team in your corner 🙂

        I started a “healthy recipes” thread in the forums, feel free to check it out for recipe ideas and if you want to keep each other accountable to healthier eating, I would be happy to do that with you! I know it is online, but sometimes having someone to help me works wonders. I am pretty good at eliminating white sugars (never really eat it) and I now try to eliminate all standard carbs (rice, quinoa, breads, pasta) and only get carbs from veggies. I notice a huge difference in how I feel even when I do this for a week. Goodluck and let me know if I can help! Hang in there 🙂

        Charlene.

    • #20738
      Mark Koziol
      Keymaster

      Hello Wendy, thank you for sharing your visit to the doctor. Many of our members have mentioned when they began living a healthy lifestyle they have felt better overall. Keep the positive attitude going, stay active, and enjoy your loved ones. Best wishes, Mark.

    • #20750
      Mary Osullivan
      Participant

      I was diagnosed with pulmonary fibrosis 4 years ago. The first year I really had no symptons…not even a cough, and it was found by my pulmonologist when I went for a check up for my sleep apnea as I needed an order from a doctor to order more supplies from the insurance. You can imagine my shock at the diagnosis after the cat scan. the second year I noticed some difficulty going up inclines, but did fine if the sidewalk was even. Couldn’t run or even walk really fast without getting out of breath a lot but I attributed that to being out of shape. Began dieting and swimming in our pool and lost about 30 pounds. I thought it odd that my breathing wasn’t a whole lot better but just kept exercising and figured it would slowly improve. By the third year I was getting sick…seemed like I’d just get rid of a cold and would catch one again. I’d be back to the doctor and on antibiotics over and over. I still was not on oxygen at this point. We had planned a trip to Yellowstone Park and I cleared it with my doctor before I went. Well I caught a cold again on the plane and it went downhill from there. We got through the trip and I went back to my pulmonologist and told him I wanted a referral to Duke University. My pulmonologist referred me to Dr. Marshall there. The team felt I had an autoimmune disorder and I was put on Cellcept 1000 mg 2x per day. I also was put on Prednisone 10 mg 1x per day. I have had no side effects from either medication, but I am having a terrible time losing weight. He said I would be a good candidate for a transplant (which I am interested in) but I needed to lose 40 more pounds to have a BMI less than 30. I am having one heck of a time losing the weight now. My stats have improved a little and I’m doing well in rehab but feel somewhat pressured to get this weight off in case this disease takes a turn for the worse any day. Also…I have a terrible cough with flem constantly. I take Mucinex 1200 twice daily, but still cough. It did stop the choking at least. Any suggestions on the weight loss is appreciated. Othwr than that I feel pretty healthy. I can’t say I am ever really tired as long as I get my 10 hours of sleep! 🙂

      • #20756
        Mark Koziol
        Keymaster

        Hello Mary, you can lose the weight. I was in a similar position before my transplant. I had to lose 80 pounds so I could be eligible for a transplant . I took the challenge and did what I needed to do. I usually ate 5-6 small meals a day. I had a protein with each meal and a small carb. My intention was to eat healthy but as you know it doesn’t always happen this way. The weight will come especially combined with your pulmonary rehab. I also suffer with an autoimmune disease and I take precautions when in public. I previously wrote a forum topic on my weight loss. Here is the link. Best wishes Mary. Please keep us updated.

        https://pulmonaryfibrosisnews.com/forums/forums/topic/meeting-weight-qualifications-for-transplant/

        • #21109
          Cynthia
          Participant

          I’m on 1000 mg 2x  a day of Cellcept and 40 mg of Prednisone. One or both of them are giving me terrible insomnia. I do feel tired during the day.

        • #21113
          Mark Koziol
          Keymaster

          Hello Cynthia, I’m sorry to hear about your troubles with sleeping. One of the side effects of prednisone is insomnia. Some experience it and some don’t. Have a conversation with your prescribing doctor and maybe he can come up with a remedy to help you sleep. Take care, Mark.

    • #20861
      Cynthia
      Participant

      I was first diagnosed with interstitial lung disease in May 2019. Because my blood tests were inconclusive, my pulmonologist decided to call it IPF rather than an autoimmune issue. I went on Ofev. When I had a flare-up of a skin problem on my hands, and the rheumatologist saw it, he ordered a skin biopsy, which proved positive for “mechanic’s hands.” (Some 70 percent of those with mechanic’s hands get ILD.) That tipped the scale for the pulmonologist and he changed his diagnosis this week. I’ve just started prednisone and Cellcept. He feels this could be good news for me. If some of what they thought was scarring is actually inflammation he said I might actually “get better” and possibly get off the oxygen. And he said there’s a good chance I could go into remission. I left feeling more optimistic than I have since the initial prognosis. I’m almost 72 and if I can get six to eight good years on these drugs, I’ll take it happily.

      • This reply was modified 1 year, 1 month ago by Cynthia.
      • #20868
        Mark Koziol
        Keymaster

        Hello Cynthia, this is great news you have brought to your forum members members. Thank you for the update. Good luck, mark.

      • #20869

        Hi Cynthia,

        Wow, thanks for sharing – what a different week you’ve had! Does the doctor think the Prednisone and Cellcept will bring down the inflammation, and if it does, he can conclude it is an autoimmune issue with inflammation vs. scarring and IPF? Goodluck with the drugs, I hope they don’t have any side effects and work wonderfully for you! Keep us posted 🙂 I’ll be thinking of you.
        Charlene.

        • #20874
          Cynthia
          Participant

          It won’t be a magic bullet, but he seemed hopeful that I’d see some improvement. I definitely have some scarring that can’t be reversed, but there were areas on the CT scan where he said it was hard to determine whether it was inflammation or scarring. Given the autoimmune issue, he’s now thinking some of it is inflammation and that the drugs will remove it. The disease is still progressive, but he says many people go into long periods of remission. I’ve seen posts on other forums from people who have been on Cellcept for years. Of course it has its risks; you’re much more vulnerable to viruses and infections, but I’m willing to take them.

          I’d love to hear from others who have had long-term success on this treatment.

        • #20885

          I will keep my fingers crossed for you Cynthia! Please let us know how you make out on the two new drugs. I know the risks are there for catching a cold/virus, due to lowering your immune system but I hope it helps improve your ability to breathe. Thanks for sharing.
          Charlene.

    • #20865
      linda waldschmidt
      Participant

      Cynthia, I am glad you got better news. I saw a relative of mine and she is on oxygen. She has a Phillips Simply Go that she uses when out and about. She felt like its not working for her that good,but she has other issues with her lungs than IPF. The only thing I know about the machine is she left me hold it and I can tell you it is heavier than my oxygen tank that I carry around that I get from Lincare.

      • #20867

        Hi Linda,

        That is the machine I have – the Respironics SimplyGo machine – and you’re right, the only complaint I have about it is it’s weight. It’ll be interesting bringing it with me to Hawaii, in terms of lugging it around because it is heavy, agreed. Wishing your relative the best!
        Charlene.

      • #20876
        Cynthia
        Participant

        What appealed to me with the large Simply Go (not the mini) is that it has continuous flow, which I need for sleep. It would make it so much easier to travel without arranging for a concentrator. And sometimes I just want to go for an overnight trip.

        • #20884

          That is one of the factors I considered too Cynthia! I have to admit, it has been a very easy POC to travel with, aside from the weight but others tend to help lug it around for me. Would your insurance cover a POC? Really worth the investment if one can manage financially to buy it, though I recognize this isn’t always the case. Charlene.

    • #20903
      Taleena Koch
      Participant

      Another reason some may not be prescribed Prednisone on a regular basis is because they have IPF – the idiopathic form of PF.  It is now known that Prednisone does not usually do a lot of good in those with true IPF as there is not much inflammation.

    • #21014
      Dan
      Participant

      I was first diagnosed with PF in June of last year.  By September I’d had a battery of diagnostic tests including an open lung biopsy, resulting in a narrowing of my diagnosis to chronic hypersensitivity pnumonitus (HP) as a cause for my HP.  Further test of a variety of antigens to try and determine the source of my HP was inconclusive, making my HP of unknown origin.  The PF can’t be reversed, but the HP can be slowed or stopped IF we can find and eliminate whatever it is that is causing the inflammation in my lungs.  The hunt good on.

      In the mean time I went on a burst and taper off Prednisone while titrating up on Mycophenolate (1000MG 2x daily).  Since then (around 6 months now) my inflammation and consequently my PF have not gotten any worse.  Which is great news given the alternative.

      I’ve not experienced any noticable side effects from the Mycophenolate.  My Dr also put me on sulfameth/trimeth to help me keep infections at bay.  I’ve not had any problem with that.

      I too am working on getting some weight off in order to get my body fat percentage under 30% to qualify for transplant if the time comes.

      I use supplemental O2 when exercising to keep my saturation above 86 and I start rehab next week.

      I’ve had Pulmonary function tests about every 12 weeks since diagnosis.  The drop in function was observable until I started the Mycophenolate.  Since then it’s leveled off.  We believe it’s helping.

      I still get out of breath.  I still cough.  I still get tired easily.  These things won’t change unless a way to reverse the lung damage done by PF scaring is found.

      Until then… I’ll stick with the Mycophenolate (Cellcept) as long as I can and just adjust to my new normal.

      • #21018
        Mark Koziol
        Keymaster

        Hello Dan, thank you for commenting. I am glad the cellcept is doing it’s job. Keep working on the weight loss. If possible mix in some weightlifting along with cardio if you haven’t already. When I was losing weight I had to do all my exercises sitting down because my sats dropped to much when I would stand up. Also keep your o2 sats above 88%. When it drops below 88% it can affect your other organs. I hope you remain stable. Keep up the good work and best wishes. Mark

    • #21846
      Sofia
      Participant

      My mom, aged 72 diagnosed with IPF or  an autoimmune issue (mayby hypersensitivity pneumonitis).

      not clear diagnosis because of sudden severe ards 2 months ago. we are from Greece.

       

      she is on steroids (medrol) and cellcept (1000mg/day). her pft test are geting worse (she made 3 the last 3 months). I have an HRCT but 2 pulmonologists disagree (IPF or other ILD).

      waiting for an appointment on a third pulmonologist next couple days.

      While she is still on cellcept and steroids which they are immunosuppressants does make sense to do flu shot?

       

      • #21847
        Cynthia
        Participant

        I’m also 72 and was diagnosed last spring with pulmonary fibrosis. At first they called it IPD (idiopathic pulmonary fibrosis) but later determined it was caused by autoimmune disorders. I started at 1,000 mg cellcept a day and am now at 3,000 mg. I’ve been on it for almost three months, which is how long it takes to start working. I’ve also been on a steroid (prednisone) but am tapering down. I’m starting to seeing some improvement, and my doctor is hoping we can keep it stable for a while. Yes, she can (and should) get a flu shot unless her doctors tell her there’s a particular reason she shouldn’t.

    • #21848
      Sofia
      Participant

      Cynthia, thanks for your prompt reply.

      since steroids and cellcept are immunosuppressants how you deal with possible infections ?

       

      • #21849
        Cynthia
        Participant

        I do worry about that and wash my hands a lot. I also carry wipes around with me to clean surfaces. And I don’t greet people with hugs or hand shakes anymore. I stay away from hospitals and schools. I’m up to date with all my vaccines. But my doctor tells me not to let it make me crazy.

    • #21850
      Sofia
      Participant

      So happy you are dealing great with your new treatment. Hope feeling even better and get off O2.

      what about your skin problem on the hands? once I read it I realized my mom also has a problem with her hands. From elbows to palms she has inks from time to time and a thinner skin. was it the same with you?

      • #21851
        Cynthia
        Participant

        Last winter my hands, especially around the thumb and index finger, got very red and cracked. It was quite painful. I thought it was the dry winter air and tried treating it with hand creams and mositurizers. A biopsy showed it positive for connective tissue and it’s what they call “mechanic’s hands.” Some 70 percent of people with this rash get interstitial lung disease. I also had a rash that looked like eczema that ran from my hands to my elbows. The skin rashes have pretty much disappeared since I’ve been on the cellcept and steroid, but I do have some cracking on the palm of one of my hands.

    • #21853
      Sofia
      Participant

      Maybe schlerodemma?

      • #21860
        Cynthia
        Participant

        They believe it’s dermatomyositis and Raynaud’s.

    • #21867
      john styles
      Participant

      I had the same problem with my fingers, it was auto immune. My fingers would go raw and bleed and evan when I touched soap they would bleed. It was lachen planus, mine cleared up when I stopped taking  milk  thistle and probiotics. I guess we have to remember auto immune is our body saying it does not like something. I also had a good response with 50 mg of prednisone but after 3 months the improvement stopped and the decline in lung function started again. I am still on prednisone 10mg a day, because of the prednisone I take allicin the compound in garlic that helps prevent infections and dapsone 100 mg. Dapsone is for leopsary but has anti inflammatory and helps prevent lung  infections. I use hand sanitizer all the time, I keep a bottle in the car and when I fly I wipe everything down. If I touch a door I wipe my hands. I have not been sick in 2 years. It is a change in life style.

      • #21868
        Cynthia
        Participant

        @caneelbay1

        Your doctor didn’t suggest Cellcept? It’s pretty effective in treating autoimmune-related pulmonary fibrosis.

        • This reply was modified 10 months, 2 weeks ago by Charlene Marshall. Reason: tagging
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