Hi guys, i have diffuse systemic sclerosis with lung fibrosis and I have just been started on mycophenolate and hydroxychloroquine. Has anyone been on these drugs long term, have they experienced any improvements or side effects on them? Also I am a medical student in the UK so I am about to start working as a doctor in the NHS - is this a problem for me being on immunosuppressants am a bit scared of the future. Are there any doctors/nurses/healthcare workers in this forum with the disease?
Starting on Mycophenolate : Hi guys, i... - Scleroderma & Ray...
Scleroderma & Raynaud's UK (SRUK)
I’m on mycophenolate its really doing good for my arthritis n helpful with my lung disease
I’m on hydroxychloroquine and experience no side effects - you do need to have your eyes checked (I think annually) so make sure to mention it to your optician. It’s an antimalarial they call “disease altering” so is not actually an immunosuppressive.
I tried mycophenolate a few years ago when things were quite active & it made me too sick. Suppressing your immune system is always a risk; have you told your doctor you’re a medical professional? It is not an easy decision I expect it depends on how active your disease is and weighing up the risks. If you’re just starting on both, I assume you’re just diagnosed? I’d strongly suggest talking to your doctor
Thanks for your reply I told my doctor about being a medical student and he said it should be ok as long as you are cautious in hospitals and wear a mask etc dont go near patients who have infections.
I was diagnosed in January and I just had a CT scan which shows extensive lung fibrosis so thats why theyve started me on these two drugs. But if another drug that is not immunosuppressive can help me that would be great!
I have been on hydroxychloroquine for about 5 years with no ill effects, although i am not sure of the benefits. I also took mycophenolate for a while but it made me neutropenic. Thats why it is important to have the monthly blood test. I have now been switched to azathioprine and have had no ill effects. I was working as a teacher, so cant comment on being in the health profession, but children are notorious germ spreaders. I did find if i caught a cold or virus it lasted longer and was much worse.
First of all what a great profession you have chosen.
I am sure that if any profession will help and ensure
your well being , you are in the right one. Obviously,
professional discussions will occur about how best
to support you.
I started on hydroxychloroquine September 2020.
I do not think I have lung fibrosis as and not been told
as such ... but have systemic sclerosis.... so confusing
Started Mycophenalate Friday 23rd October and have
booked fortnightly blood tests as necessary to check on
Currently... I cannot tell whether things have changed
physically or not as too early.... but time will tell and told it
takes a while.
Good luck with your medical training.
I have systemic sclerosis which has given me lung scarring, a little bit of interstitial lung disease, pulmonary hypertension and inflamed tendons and joints in fingers and toes and a bit in hands and feet. I was started on mycophenolate mofetil in July 2019 (after I was stabilised on several vasodilators and the like) and they started it gradually - 2 a day for a week (or was it two weeks), then 3 a day for 1 or 2 weeks then 4 a day, and then adjusting times gradually to make it 2 twice a day. Always taken after food. The rheumatologist said that increasing gradually was the key, and that if the up-titering regime they had me on gave me too many side effects, to come back to them and they would give me an even more gradual schedule. I found that it loosened my bowels for about three days after each increase or after changing the time I took them and then it settled down. Once all that was in place, I started the hydroxychloroquine which would be early August 2020. No side effects from that. The mycophenolate was primarily to stop the lung scarring from increasing but was expected to benefit inflammation in general as well. Nothing especially obvious happened until early September, when it was like someone flicked a switch and over the space of about four days I went from unable to grip a knife to chopping fruit. Took longer to be able to chop harder things like veg. I then had another medication for the PAH added to my regime and that took me through to February. Things were a little up and down until June 2020 - some weeks felt really pretty good and others like the tail end of having flu - really tired and aching muscles. I was advised to be very careful to regulate my activity otherwise you can get into a boom and bust cycle. In June I realised I had more stamina. In July I was just happier. Really did re-gain a whole lot of my old bouyancy. Been good since then.
Regarding side effects, I would add the note that some of the side effects are the same as some of my symptoms, and overall the symptoms got a lot better. So it isn't possible to tell if I am definitely not having side effects, but since I am so much better overall, and don't have any new symptoms/side effects, then it is a big win. I've been told that you can see improvements up to two years after first taking mycophenolate.
Regarding infection, no, but I live out in the country and don't go out to towns much or use public transport. No increase in my normal level of infection and I am dealing with animals and getting bitten by insects without picking up lingering sores. All my lung clinic tests show improvement. I do still have some problems with my hands and feet but much less and now I am getting help from occupational therapy and podiatry to manage and improve the residual problems.
Thank you so much for sharing your treatment - I have also been recommended to uptitrate my mycophenolate - so far I havent been having any side effects which is good. Although being on these medications mean I havent been able to attend my medical school placement because I am clinically vulnerable :(- but my health matters more! I'm hoping that once I'm stabilised on my dose it should become easier
When you are qualified please come and be my GP - it would be wonderful to have a GP who understands this awful disease. I'm in the same boat as you plus lung and heart issues and stage 3 kidney disease and breast cancer. I've been taking hydroxychloroquine for about 4 -5 years without any side effects. I had to 1 a day and on alternate days 2 a day. Recently my condition deteriorated (I'm now 80) and in August this year I was prescribed micophenolate with the hydroxychloroquine reduced to 5 tablets per week. I'm just beginning to feel the benefit and I'm less tired these days. Consultant wanted me to take 4 micophenolate per day but at the moment I'm only taking two per day as I was advised to increase them slowly. I'm reluctant to take more as I felt quite nauseous when I started on them but that's settled down now and I feel like I can tick along on two.
I wish you the best of luck with your studies.
Aww thank you so much! Yes it is true that many GPs don't understand this disease fully - I think because its so rare we do not get that much teaching on it in medical school but luckily I did a placement at Royal Free and we got some teaching on Scleroderma and saw people with the disease so I was able to recognise symptoms from that! Good luck with the treatment hopefully you wont get side effects as you increase the dose from now on! Wish you best for the future
Hi, I am on highest dose of mycophenolate for about 3 years now n also I have had success in stabilising my ILD for the moment, it has been limited n controlling any other of the symptoms. hydroxycloroquine didn’t do anything for me at the dose I was allowed to take so discontinued use of that.
Fortunately I have had no side effects from anything but that was a big worry for me initially.
I take 7.5mg prednisone too which helped with the pain initially but is wearing off now.
Good luck in your care and your career. Let’s hope this is not forever!
Thank you so much for your reply. That sounds great that you haven't had any side effects! Have you taken extra precautions being on immunosuppressants since starting them or have you been living your life as normal as you can! I am hoping that the mycophenolate stabilises my ILD but Im just concerned that it will put me at risk of getting other infections especially with the current climate of COVID and me working in hospitals.
Absolutely. I understand your concerns. I’ve went through phases of taking vitamins etc but generally the medication has not held me back at all. Like I say doesn’t feel at times like much benefits from it when you’re really struggling with the illness but the ILD stabilising was always my main concern. I was shielding but as I’m in an area of Scotland with low infection rates I’m getting out in about a bit now but obviously being super careful. In winters before tho I’ve had no more colds or bugs than pre medication n I do voluntary work with children who are normally super spreaders! Maybe I’ve just been lucky, I’m sure others will have had different experiences but hope that gives you some confidence. Also I would imagine you’ve done your research n although immune suppressants put you at high risk for Covid, at least you can take a break from them if needed n apparently lung disease is way down the list of illnesses proving fatal with it which is so strange since it is a respiratory virus! Take care
I’ve been on mycophenolate since it first came available. I am also on the maximum dose. This has been a game changer for me. I’m also on long term prednisone, coming up to 20 years. My maintenance dose is 7.5mg.
Before mycophenolate I hah two rounds of cyclophosomide, methatrexate but still had progressing lung disease. This drug has stopped it and initially gave some improvement, and I am still here.
I have had no side effects, I am monitored with my blood tests by my GP practice. My drugs are delivered to my home by Health care at home. Prescribed by the Royal Brompton.
Hydroxochlorinequinine, however was prescribed for me for increased joint pain but had no positive effect for me. I know this has been the case for others too. It there are others to whom this drug is beneficial . You do need eye tests regularly as there are risks but this will be talked through with you by your consultant.
As you are a medical student the main risk for anyone is the suppression of your immune system on mycophenolate especially with Coronavirus. For example I am shielding for various reasons but for immunosuppressants (mycophenolate), lung disease.
I wish you all the best with this illness, please stay positive medicine is advancing all the time and I have really benefited from this during my treatment. Also with your career.
Regards Helen x
Thank you so much for your reply! Yes I do realise being a medical student who is immunosuppressed is difficult especially with COVID 19. Has the mycophenolate help stabilise your lung function. Also do you know whether you'll be on this drug for longer and how long can you stay on an immunosuppressant?
I’ve been on prednisone for over 18 years and I think I’ve been on mycophenolate for over 10 years, from the beginning, someone has to be the first lol. I also started straight on the maximum dose and have maintained on it. I don’t think there is any plan for reducing it or stopping it. As I said it has been a game changer for me . My worsening lung disease improved and is now stable and I had been in decline for some time.
Oral methotrexate didn’t really do much. I had two cycles of cyclophosphamide by infusion. On the second pulse of the second round my periods stopped and never returned but I knew this was a risk and lung deterioration was halted.
Outside of Covid where we have maintained full shielding, I live a full and active life.
I’m careful of infections but not overly. My friends tell me if they are I’ll and then I’ve maintained social distance but still socialised. I’m careful of chicken pox being immunosuppressed a seven though I had it as a child I’ve been told it’s dangerous for lungs.
I think if you wear proper PPE, maintain strict hygiene and barrier nursing etc then infection risk is low.
I’ve not had many infections because I’m careful and sensible but I’m still sociable and active.
I wish you every luck and best wishes x
Hi Helen. Your story sounds so similar to mine medication wise yes. Interested to hear your experience of cyclophosphamide tho. I was considering that prior to lockdown. Thanks for sharing that info x
I had two rounds of 6 pulses each of cyclophosphamide. By the second pulse of the second round my periods stopped and never returned.
I did know this was possible and we had three young children. We had wanted another but I was getting very ill.
The cyclophosphamide arrested the lung deterioration. Oral methotrexate didn’t help and I couldn’t tolerate azaphioprene ( liver issues).
Mycophenolate has improved and maintained my ILD.
All treatment has benefits and side effects. It’s a case of finding the balance between improving and poisoning.
The consultant will talk you through all the benefits and then the risks. You will also be carefully monitored.
I wish you all the best x
Thank you very much for insight. My consultant isn’t that helpful. That’s why I’ve held off n done my own research. I know it is a very aggressive drug n just wonder since my ILD stable at moment if it’s worth the risk. Can I ask how long into the illness your lungs were affected n how long they’ve been stable. I didn’t take medication at all the first few years (like I say poorly informed by consultants) n by that time I had ILD n my DCLO was 64%! It’s remained at about 63% now for a couple of years so I’m delighted. I have a young daughter and was so worried about the mortality rates but it’s always good to hear of anyone so many years in with the disease n stable. Best wishes to you too.
When I was first diagnosed in 2002 I had 3 girls under 3 and was told I could die within 3 years. It was fast onset scleroderma. My lungs were involved from the onset and my decline was rapid and frightening.
I was lucky I had a fab Rheumatologist who started methotrexate straight away but when that didn’t touch it told me he was Hugo refer me to Prof DuBois st The Royal Brompton lung hospital in London, the specialist lung centre , pretty much worldwide. He also told me not to do trials that I needed aggressive treatment and couldn’t chance any placebos. He was kind but clear. We wanted another baby when we first saw him but he kindly told me I needed to try to be there for the babies I had.
It takes someone special at consultant level to refer you to someone more specialist and eventually I was referred by the Royal Brompton to The Royal Free UK specialist scleroderma clinic.
Because of this I had two rounds of cyclophosomide both over 6 months. It stopped my periods an early menopause but I knew that because of my consultant.
These treatments bought me needed time for the new drug mycophenolate(cellceot) to become available. I was one of the first on it and it dramatically improved my lung function and now I am maintaining and plateaued.
I’m active, currently doing couch to 5k. Yes I don’t like hold but I used to be really breathless.
Before this drug I tried many other drugs that didn’t work for me or I couldn’t tolerate like azaphiaprene.
Yet others have side effects with mycophenolate and tolerate the other.
Consultants are the best guide.
Ask probing but polite questions, be your own expert and advocate.
You must be monitored on high risk drugs and I’m lucky to have mine done at my Gp every 4 weeks. My drugs are issued by the Royal Brompton but delivery is by health care at home.
I love the NHS.
I wish you all the best x
Any questions post here. It’s a worldwide community with other perspectives, but remember your tolerance is unique to you as this dreadful disease is unique to you too.
Best wishes x
Thank you so much for sharing your experience . Yeah that’s the thing it’s nice to get reassurance but it’s so individual this disease, no two cases are the same! Well you stay safe. Very impressed on your couch to 5K. At the moment walking can be a struggle but great to think that maybe one day in the future....who knows. Got to remain positive. Thanks x
I have been on mycophenolate for 12 months 1g twice a day (4 tablets). It has helped control my SS and I am more mobile. I'm also on Prednisolone-10mg. Suppression of immune system is a concern. I contracted an infection in January and was in hospital for 4 days on IV antibiotics so you need to be careful. So far I've had no side effects, blood tests have been ok. I check my urine for protein at home, you can get the dip sticks on the internet. Good luck with the condition and your future career.
Thank you- that sounds awful being on IV antibiotics for 4 days. Thats exactly what I am afraid of. I think I just need to be more careful about being in hospitals and surrounded by infection. Do you know how much longer you're gonna be on this drug for?
I’ve never had a major infection despite being on the maximum dose of 6 per day.
If I start to feel a cold is getting to good a hold I halve my mycophenolate and double my prednisone. I also have my own pack of antibiotics if I feel a lung infection. I act early and contact my GP and consultant.
Hello and welcome! I have been on plaquenil for over 4 years, no problems with it at all. I took Cellcept for about 2 years and was doing well until last winter I needed three antibiotics for a chest infection that wouldn’t clear, and in the end I was hospitalised became neutropenic and they stopped my cellcept.
I also have Rituximab infusions every 6 months, daily low dose steroids.
I have limited systemic scleroderma thankfully no lung involvement at the moment, but I have 4/5 CREST symptoms.
This is a brilliant source of information and support, I was an ICU nurse, so I have moved to a non clinical area and because of COVID and the drug regimen that I am on, I am working from home.
Good luck with your Medical career, I miss clinical so much, you must look after yourself. The medications take a while to work, and there is a degree of trial and error, so be patient and mind your mental health, relax and get plenty of sleep.
Thank you for your advice! So before COVID were you able to work in a clinical environment well or were you advised to not go to certain wards because of being immunosuppressed. It sounds awful being in hospital for a chest infection. I'm getting blood tests fortnightly at the moment to check my white cell count. Are you doing well on Rituximab? I think they might think of switching me to Tocluzimab
You are most welcome. I have not worked clinically since last year around the time of the episode of neutropenia. The chest infection was very severe and I actually cracked some ribs from coughing! I am working from home now, in a non clinical role because of COVID and being very careful. The Rituximab infusions started 18 months ago, and I am doing well on it. I am also taking Prednisolone and plaquenil. You will need to discuss with student health/ occupational health and or a rheumatologist prior to starting clinical. Look after yourself, there are ways round everything,and you need to protect yourself. Good luck 😉
Autoimmune diseases like scleroderma used to be treated with antibiotics please get the book “scleroderma the proven treatment that can save your life.” I have been on this treatment 2 years and doing so much better about 50% better! been told I could be in remission in another two. There’s also a website called roadback.org where you can get info and read people’s stories. I’m a nurse I’ve learned anytime there’s major inflammation in body most the time is caused by bacteria or virus got to get your immune system strong so it can fight this off the antibiotics help to keep them from multiplying but your immune system has to do the trick. All modern medicine is doing with everyone is suppressing immune system to cover up the issues only to have worse problems later on. Take care
I have just finished reading this book. As someone who is new to limited sclerosis with mild symptoms it's been quite a shock to read the stories of other sufferers. Are you on minocycline and did you find it hard to persuade your doctors to pursue the antibiotic route?
Glad to hear it's making such a good improvement for you.
Yes I couldn’t get my rheumatologist to prescribe and she was pretty rude to me as well. I had to go to roadback.org and find a doctor that would. I take minocycline and doxycycline sometimes too. I also eat lots of fruits, vegetables and take anti inflammatories. I’m doing anything I can to boost my immune system I have the serious one I went from normal to barley being able to open my mouth in a couple years!! I’m about 50 % better and have all my energy back just graduated nursing school! God is good so glad I learned how to take care of myself you are your best health advocate!
I have been on hydroxchloroquine since diagnosed 6 or 7 years ago. No issues and has kept most of my symptons at bay. I have a PFT every year and so far things are good. Good luck with everything.
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