Can anyone please tell me of their experiences on this drug. I have just been prescribed them for a lung condition related to scleroderma.The thought of being immunosuppressed has sent my anxiety through the roof. I work full time and am customer facing, I have no control over being around people all day every day .
I really dont know what to do .
How easy is it to catch things from others how has everyone else got on with it? I would love to hear back from anyone with advice please
I do sympathise with your anxiety given the nature of your work. I’m lucky to be self employed so so I don’t have to meet people much and have found Mycophenolate an excellent treatment overall although I’m now on Rituximab infusions as well. I haven’t found that I’ve had frequent infections and only caught Covid first time last year shortly after surgery when I was off mycophenolate. Is there a Human Resources team you can speak to in your work place and ask them to make reasonable adjustments so that you are redeployed to a less public role perhaps? The only thing I would say is that Systemic Sclerosis with lung involvement is pretty serious and, if your rheumatologist thinks you need immunesuppression, then I would say this is a major consideration. Best of luck whatever you decide.
I took my open late for a few years until it affected my white blood cells and I then switched to Thorne. I work as a special needs teacher so have a lot of contact with people and often close contact with children who are well known for sharing any illnesses. I haven't noticed any issues or increase in infections and have rarely had a cold even. Hope this helps
Hello,
I’ve been on MMF for 7 months now. When the Royal Free prescribed it to me, Prof Denton explained that it doesn’t make you immunosuppressed per se, it calms your immune responses and brings it down to the levels to that of the average person.
I had some horrible headaches and felt very fatigued/run down for the first couple of weeks but I feel that I adjusted quite quickly. I also got one or two mouth ulcers but again, I haven’t had any since that initial period. I didn’t get any nasty colds over winter and I honestly don’t feel that it’s had any negative effects, other than some sensitive skin, which is a well known side affect. You’ll be advised to have Covid and flu jabs too and it’s worth doing this if that’s your preference.
There is lots you can do to boost your immunity to bugs - I take a daily probiotic to help my gut and there will be other supplements you can take too if a probiotic isn’t for you. Take care not to burn the candle at both ends too much too as one thing I have noticed is that I can get more tired, but I think that is part of the condition in general.
I also see lots of people through the week and have a five year old Petri dish who brings all sorts back from school but I still haven’t caught anything horrible, even on flights and busy events etc.
I completely get your anxiety around this and I had the same dreads when I started taking it but I’ve been pleasantly surprised by how easily my body adapted to them. The benefits definitely outweigh the negatives and I’d rather have more frequent colds than have this hideous condition get worse.
As OldTed said, your HR dept should make reasonable adjustments for you - I don’t know what you do but maybe a plastic screen ala Covid between you and customers could help or maybe wear a mask again if you are really nervous about it? The good thing is that we are coming into spring/summer with naturally less bugs around, so hopefully a good time for you to be starting and adapting to it.
Good luck, easier said than done but try not to worry too much about it. It all sounds far scarier than it really is.
I am so glad you responded Thank you your explanation from professor Denton has made me feel so much better 🙏
First thing, is don't panic. My wife had similar concerns and while she did experience more side-effects than most, it has settled down now with a lower dose. In truth, she has found she is not particularly vulnerable to people's colds etc but does avoid the Covid and flu vaccinations following worries from some other sufferers who take micophenolate. The body does get adapted to it, now the only effect is sleep disruption but that is rare as a complaint. Viewing it positively, it has kept her lung fibrosis at bay, yay. No worse after 2 years in damage and performance. As to work, my wife is 67 and given up daily practice, part-time now as can never know how she will feel day to day. Generally, much better than when this started with extreme weight loss, endless coughing etc.
I am retired but the family know to stay clear if they are obviously infected. The only side effects was a temporary drop in white cell count which recovered with tablet adjustment (now back to higher dose and wbc count in range). Mouth ulcers can be a nuisance but again I’ve learned to avoid these by testing the temp of tea etc and avoid ‘sharp’ food (crisps, breaded items). I can live with these in the knowledge the mycophenolate / hydroxychloroquine have resolved most issues (e.g. lung fibrosis has gone, range of movement is excellent and no pain). Stiff hands and weight loss is about my limit but at mid 70s not bad.
Good luck. Remember everyone is different and be positive.
Thank you Whistler If i can feel as good as you do in my mid 70s I will be a very happy lady.
I have been taking myciphenolate since 2016 with no side effects. My rheumatologist also prescribed hydroxychloroquine and niphedipne also, since 2016. I work face-to-face with the public every day since I manage a dental office. There has been no progression of my scleroderma or my interstitial lung disease and my blood work keeps coming back good. I contribute to the medication that she put me on. Good luck with your decision and I hope you have a good rheumatologist like I do because that can make all the difference in the world.
It may make you feel somewhat better if you realize you’re not suppressing a normal immune response, you’re calming one that is hyper-reactive, malfunctioning, and causing your disease. It needs to be reigned in. I’ve been on the max dose of mycophenolate/Cellcept for 3 1/2 yrs and it has been lifesaving for me. It can take a long time to start having significant effect, so be patient and be sure you’re taking it properly. It was 8-10 months before things started to have noticeable effect for me, but then it was major. My lung function stabilized, skin softened, and early GAVE (gastric antral vascular ectasia) reversed. I have not gotten sick any more often than before, but I do take precautions, particularly in high risk settings. You may not be able to control being around people, but you do have the ability to mask when necessary, wash hands more, keep your distance from people that are sick, etc.
Thank you so much again I feel relieved. I have buried my head in the sand for the last 3 years since being diagnosed with scleroderma not wanting to talk about it or even find out anything about it, as mine is very mild but I have now been told I have a small amount of damage in my lungs so the mycophenolate has been prescribed.It's very hard to accept there is a problem when you feel so well,
I am so pleased my friend persuaded me to go on this forum it has helped so much I was making myself feel unwell with the anxiety.
Hi. I work as a nurse full-time and I'm on 3 grams of MMF daily. I asked my rheumatologist if I need to ask my manager if I need to be careful by wearing face masks everyday and he said not really. I had a chest HRCT scan and detected early ILD so I am basically the same as you. I was devastated when I had my diagnosis last year and I was thinking that I am fit and healthy as I am only 34 years old. I am still hoping that I get this horrible disease well-controlled and have kids soon. We'll get through this!
Thank you for your reply and I'm so sorry to hear you have been diagnosed the same as me. I'm getting concerned as I will be taking one 500mg tablet every day for two weeks then x2 500mg everyday for two weeks then x3 500mg my dose seems so high compared to everyone else.We will get through this THANK YOU 👍
I am so so glad you asked this question. I was diagnosed in 2023 and I’m about to start mycophenolate for mild lung involvement. Like you I have been fretting , so this post is of huge reassurance. Thank you !
I was on micophenalic acid as I couldn’t take michophenalate mophetil because of stomach issues but after 2 yrs I lost so much weight and had caught multiple infections to the point I could recognise myself. So they took me off it and now waiting for rituximab to be done. It did me poorly with the weight loss and infections but I didn’t have much pains in my joints and bones when I was taking it. I now do a part time job and the truth is I am gery cautious about being close to people. I often wear a mask as I find when people cough etc I tend to get sick. I guess my immunity is really low right now. Wish you all the best. I am also on hydroxychloriquine and nifedipine which helps with ulcers but is also going to get the illoprost infusions as well.
All the best what might work for you might not work well for someone else so take all our inputs as our experience as yours might be different. 🙂
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