Fatty liver with Leflunomide

Has anyone else found they have fatty liver, Gp says it's all the weight I have put on since taking steroids, have been on them 18 mths and started taking Leflunomide 8mths ago, went for a ultra sound scan and found the fatty liver, had a CT scan still waiting on results, just wondered if anyone else has had this trouble, seeing Rheumy next week wonder if I should stop taking Leflunomide as after reading about the drug found it can cause fatty liver, thank you for any responses. Val

41 Replies

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  • Hi valrene - I wondered what was going on that you had an ultra sound of your liver done? Does a fatty liver show up in blood tests? I don't know if you remember me -we have spoken on this forum before😊

  • Hi zebsky yes I remember we had a good conversation about Leflunomide,how are you doing improving I hope, kept getting a sharp pain in my upper right abdomen so Gp sent me for an ultrasound where they found I didn't have gallstones but a fatty liver, then a week later I had a CT scan but still waiting for results, reading up on non alcoholic fatty liver found that steroids and Leflunomide have a bad report for giving a fatty liver, my Gp thinks it's because I have put on 3st but I would like to know if it's the Leflunomide as well, seeing Rheumy next week so would like some information before I see him, I know I have to try and loose weight but it might not only be that, in 3 mths have only managed to drop by half a mg of pred as the pain just got too bad waiting to get told of next week, wondering if hospitals try all the cheaper drugs on us to see if they work first, staying on 4 &1/2 pred I'm fine but may try dropping a 1/2 1st March, all the best to you hope you are not into much pain. Val x

  • Hi - Yes, my liver bloods came up with this some time ago, after being on Leflunomide for a couple of years. My rheumy wants to put me on tocilizymab(?) Instead of the steroids I've been on for five years, but can't until my liver bloods improve. I went to alternate days a few weeks ago, then stopped it altogether, but not enough improvement yet. A bit worrying!

  • Hi Venezia 1 thank you for replying very worrying about fatty liver as if it doesn't improve can lead to liver failure I know that is the worst that can happen but you have to wonder if it is all the drugs fault, did read that they can do a liver biopsy to see if it is Leflunomide causing it but that's not without risks, we do put all our faith in the Drs but we do not know what the drugs are doing to our body's, if I hadn't mentioned to my Gp about the pain in abdomen I still wouldn't of none about my fatty liver, Rheumy just said my liver enzymes are up and down. Val x

  • Hi Valrene, I don't know abut Lefflunomide and fatty liver, but I have a fatty liver - diagnosed with ultrasound, told not to worry too much about it. I have been on steroids since Sep 2010, have PMR and GCA, plus now type II diabetes. SInce the diabetes diagnosis my weight has increased and it's nigh impossible to lose weight. Mind you I've never been below 8mg of steroids, presently 10mg and not feeling brill. Have tried Lef, didn't agree with me and I was also interested to read what you said about it causing fatty liver. It's a worry knowing what to do next as I'm sure you know only too well. Wish you luck with your reduction and hope you feel well this Sunday morning.

  • Thank you for your replyGosingen, Gp said it's probably all the weight I have put on with steroids best thing to do is loose weight then she added it will be hard while still on steroids, I was border line type 11 diabetic but glucose sugar test came down a little so waiting to see what happens, also have high blood pressure due to i.e. Weight,steroids or Leflunomide they all course blood pressure, not really sure what to do about Leflunomide apparently reading up on it they have given it a black box against it for giving people fatty liver, oh well see what happens next week when I see Rheumy, hope you have had a pain free day.Val x

  • Thanks for your reply too, and good luck with Rheumy visit. I too have high BP and take medication for it, but thankfully managing my diabetes without meds. Almost non diabetic at last annual check up. Fairly good day today, hope yours is too. Let us know how your visit goes and what you decide about Lef.

    Yvonne x

  • I will let you know how I get on with Rheumy, so pleased about being non diabetic at last check up, hope that continues for you, PMRpro just said about the carb free diet, not sure if my stomach acid could cope without bread or potatoes, never used to eat bread until 18mths ago when I had the camera down the throat and found out I had ulcers so can't eat to much fruit or salad if I get hungry I have awful pains in stomach I am on Omeraprozle which does help, will let you know how I get on. Val x

  • Carb free diet is a trial I'm sure, I cut down, but not been able to reduce totally. Too much fruit no good either, and fatty food when you have a fatty liver, what's left to eat??? Winter months require fuel and as much as I love spinach etc etc it doesn't fill that hole. Again gd luck with your visit. Yvonne x

  • Hi Valrene,

    I had similiar right sided stomach pain and was sent for scan for suspected gallstones with the same result.My GP then told me about the fatty liver but not to worry about it.He decided it was colic caused by the Pred and put me on extra Omeprazole.I'venot had the pain again since then. I've put on about a stone since Aug after starting on steroids for GCA. It's so hard to lose weight!! I also broke my ankle in Oct ,so obviously that's not helpful with regard to exercise but I still manage to do a 3 or 4 mile walk everyday...very slowly haha!!

    Hope you feel better soon x

  • Know how you feel monkeay I broke my ankle 7yrs ago while out with my 5mth old puppy, with the leg in plaster it wasn't very funny trying to stop him doing things, hope you feel better soon at least you are still laughing !!! I wonder if it is colic I am on Omeprazole may increase to 40mg after lunch today the pain was worse, thank you for your reply.Val x

  • Hi Valrene,

    I am so sorry to read that you received so unpleasant side effects from Arava.

    You wrote on 9th December that you have been taking Arava for 4 months and were

    able to lower the Predisone to 5mg at the time.

    You encouraged me at the time

    and I started to take 10mg Arava.too.

    How many mg Predisone were you able to reduce with Arava over the period of

    over half a year?????

    I have an appointment with my rheumy on 27th Feb and I shall asked also about

    getting a fatty liver.

    I have to take a serie of blood tests this week and I wonder if they can also see in the blood tests if something is wrong with the liver.

    I also put on weight since taking Arava. I have been able to

    reduce the Predisone to 7mg.

    I had no side effects beside an ongoing cold due to weak immune system.

    Good luck with your Rheumy and let us know the out come.

    Wish you better .

    Orchid

  • Hi Orchid47 not really had any side affects with Leflunomide, it's just after having an ultrasound have been told I have a fatty liver, Gp blames it on my weight I have put on, but reading up on Leflunomide it has had a black box against it for giving people fatty liver, I will try and loose some weight Gp said it will be hard while on steroids but feel that might not be the only reason for a fatty liver want to find out from Rheumy if I should stop taking it, have only managed to drop 1/2mg since 1st December went down to 4mg like Rheumy said but had a lot of pain so went back up to 4&1/2 I then tried 4 again on 1st January but still a lot of pain so went back up to 4&1/2 going to try 4mg again on 1st March will let you know how I get on, Rheumy said that my liver blood tests are up and down wonder if fatty liver shows up in liver blood tests, hope things improve with you I see you have managed to get down to 7mg hope with out to much pain, Leflunomide really helped me get walking again without any pain, take care will let you know how I get on. Val x

  • Lefunomide does have a record of helping in PMR - there was a study done a few years ago with very promising results.

    Personally, I do get very annoyed at GPs whose immediate reaction is to blame pred for everything - especially when the patient is on another drug which has a reputation for doing the same thing!

    Never mind dropping the pred - have you tried cutting carbs drastically to lose weight while on pred? It does work! There are a lot of us on the forums who have had success with that method.

  • Thank you PMRpro no I haven't tried cutting carbs yet, I have read on here that lots of people have had successes with that plan, does that mean no bread at all, or pasta,rice and potatoes, I do get a lot of stomach pain as I have ulcers so can't eat salad or some fruits because of the acid I am on Omeprazole which does help, do you know of any diet sheets or books I could buy to help with a low carb diet.Val x

  • Just google it - there are loads of sites discussing it, from Atkins to paleo! And ask in a book shop (do they still exist?).

    Yes, really it does mean cutting bread etc - but there are ways of getting round it these days! It also depends on the person as some people can get away with more carbs than others. I have to eat very very little to be able to lose weight but others don't have to be as extreme. A very common mistake is to eat a lot of fruit as they have a fair bit of sugar. Whether it is good or bad sugar is immaterial - it is still sugar and carbohydrate!

  • Didn't realise thatPMRpro on the slimming world diet which I did for years you can eat as much fruit and carbs as you like and still loose weight, I will google it to get some information to help. Val x

  • There are people on pred who have lost weight with SW so obviously it can work. But if your primary problem with pred is that it is affecting your carb metabolism it won't - and as I always say: everyone is different!

  • Yes I have a fatty liver I had it before prednisones. I had it before I gain 20 pounds. It seems to be fairly common. I would not worry.

  • Thank you Nap 1 just thought it could be a serious condition.

  • Early stage NAFLD (non-alcoholic fatty liver disease) isn't but it can become serious:

    "Early-stage NAFLD doesn't usually cause any harm, but it can lead to serious liver damage, including cirrhosis, if it gets worse. Having high levels of fat in your liver is also associated with an increased risk of problems such as diabetes, heart attacks and strokes.

    If detected and managed at an early stage, it's possible to stop NAFLD getting worse and reduce the amount of fat in your liver."

    nhs.uk/conditions/fatty-liv...

  • Thank you PMRpro didn't realise that fatty liver can be connected to all of those serious health issues do feel now I have to do something about this.Val x

  • Hi Valrene -I was taken off Leflunomide yesterday by my Rheumatologist and I am very pleased. She was not happy with my side effects and wanted me off it. I hope you get your fatty liver health issues sorted soon.Take care X

  • Hi zebsky thank you for letting me know, I'm worried if I stop taking it I won't be able to walk without pain again, but do worry now what it is doing to my body, did your Rheumy suggest anything else they could put you on ?? You take care will let you know how I get on. Val x

  • I'm back on methotrexate -I took methotrexate from 2013 - 2016 and I've also had my knee x rayed and I'm off to physio and then to an orthopaedic surgeon.I take 8 paracetamol a day and if I take them at the right time they get on top of the pain quite well.I wish we could sit down and have a lovely chat about this over a cup of tea😊

  • So do I, my friends are so kind but unless you are going through this long term illness people don't really appreciate that you feel like crap somedays, when they ask now I always say I'm fine think they must get fed up with me always being ill and tired, can't remember where you live, I'm in the uk it's 4am not had much sleep tonight think I will need a couple of match sticks in the morning, have been reading up on the low carb diet you can fill up on dairy, meats, veg and butter and oils with 1 piece of fruit a day but if you don't loose weight cut out the fruit eat less cheese and nuts, I'm 67 can't drink any alcohol at the moment so fed up with my body but if I can't even have a nice brown salad sandwich for my lunch and a few potatoes with my roast dinner what's the point in living, sorry just feeling a bit sorry for myself as I can't sleep, just lovely to talk to some one who understands. Val x

  • I'm in New Zealand - Take again soon x

  • Off to bed for a couple of hrs x

  • HI Valrene

    Haven't seen you on the forum for over 5 months and wonder how you are getting on with the tapering of the Cordisone beloved 4mg in February.

    Are you still taking Leflunomide?

    Hope you are feeling OK and no news are good news.

    xxx

    Orchid 47

  • Hi Orchid 47 I thought the other day haven't been on here in along time, I went to Gp in March for something else told him I was in so much pain reducing he thought the Rheumy shouldn't of reduced my steroids that much for awhile so went back up to 7mg from 4mg would like to of gone back to 10mg really, my Gp told me to stay on that until I felt better then do a slower method of reducing, managed to get down to 5mg in June, had a Rheumy appointment in June as I'm having trouble reducing he put my Leflunomide up to 20mg from 10mg, having blood tests to make sure my liver is ok, to top it all I'm diabetic now type 2 so supposed to be losing weight, have cut out all chocolate,biscuits,cake,pastry anything with too much sugar and fat in, so fed up now I haven't cut the carbs out yet may have to though, thank you for getting in touch how are things with you ok I hope xxx

  • Hi Valrene

    I am so sorry to hear that you have been feeling so bad that you had to increase the Prednisone again. I was sure that you were almost off Prednisone.

    I am also trying to avoid chocolate, biscuits and cake.Difficult for someone like me who is addict to sweets.

    I found out that the only way to get ride of Cortisone is by lowering very very slowly by only

    0.5mg at the time, 1 day new , 4 days old med. etc

    I had to stop taken Lefluomide as I got gerd disease (reflux).

    I don't know if Lefluomide helped me to reduce Prednisone.

    When I lowered to 4.5mg my arms started to hurt me again, so I went back to 5mg for a while.

    My Rheumi wanted me to lower the Prednisone by 1mg per months, but I lowered to

    4,5mg in June, 4mg during July and intend to lower to 3,5mg next week.

    The fatigue has gone and I can sleep well again at night. Only I still get bruises and have thin

    dry skin.

    Some people take 5mg for years.

    Don't give up, take it slowly and you will get there at the end.

    We need a lot of patience with this horrible illness.

    Speedy recovery

    xxxOrchid

  • Hi Orchid my Rheumy nurse was more help told me to do 3days old dose then 1day new dose for a month, that's how I managed to get back to 5mg, going to wait until 1st August think I will try how you did it by 1/2 mg at a time and leave 4days in between the lower dose, hoping the extra 10mg of Leflunomide will help lower inflammation, really fed up now with diabetis can't drink because of my liver can't enjoy a bar of chocolate because it pushes my glucose up, once I get my blood glucose down I can start having a bit more sweet food now and again, like you I like sweet food more than savoury especially when I feel a bit low, will not leave it so long to let you know how I am doing with lowering pred, hope you keep pain free and well.

    xxx Val

  • Good morning Val

    My reductions are very slow and the first week I feel a bit funny until my body gets used to it.

    Starting 1day New dose, 4 days old dose, 1 day New dose 3 days old dose......

    then 1day new d. 1 day old d. 2 days new d. 1 Day old d...

    All in all 26 days. It give the adrenal glands enough time to get used to the new dose.

    I got high blood pressure and high eye pressure from the Predisone and they both are again normal since I am on low level Predisone, so your sugar level will in time come down again too.

    Good luck with the tapering of the Cordisone and let me know how you are getting on.

    xxx

    Orchid

    .

  • Morning Orchid did you not get any pain while reducing I usually wait 3 weeks for the pain to subside then I have to go back up, your way sounds so much better than I was going to do, will start on the 1st of August then will let you know, thank you off to take my beagle for a walk now at least he makes me walk every day.

    xxx Val

  • Hi Val

    I sometimes feel a bit weaker, but have no pain.

    I go every morning to a Keep fit or Pilates lesson and twice a week I do Spinning. I have also a cross country bicycle which I use at the week end. Sometimes I go swimming in the morning instead to the Sport club

    I think that Sport lifts up the moral, as well as our muscles and our well being.

    Orchid

  • Hi Orchid that's good you don't have any pain, you certainly keep active I do about 15,000 steps a day walking the dog every day but so tired all the time can't do much other exercise, I was feeling really great so maybe it's the diabetis making me feel exhausted until I get my sugar under control. Val xxx

  • Hi Val

    Signs of high sugar/glucose are dry mouth, hunger and feeling very tired.

    Do you check your sugar level before breakfast and 2 hours later?

    Do you take Metaformin?

    Walking should help to lower your sugar and 15000 step is a lot.

    How much sugar do you have on an empty stomac in the morning?

    Orchid47

  • Sorry Orchid missed your message, at the moment going to diabetic education classes last one next week talking about taking blood finger tests, what are blood glucose should be, I think then I will find out wether I will be diet only or have to take metaformin, I have plain porridge every morning, and yes my mouth is always dry, always exhausted and always hungry didn't realise diabetis makes you hungry I do try to fight the hunger, perhaps if I take metaformin it will help all of my symptoms, at the moment only testing with urine strips once a day then have to right down results and take form when I go to the classes, feel a bit down at the moment with it all, Val xxx

  • Hi Val

    Your sugar level sounds very unbalanced.

    Try diet and get Fenugreek seeds from a Health Shop.

    Put 1 teaspoon of Fenugreek seeds in a cup and add boiling water in the evening, leave

    it for 12 hours. Then drink the water without the seeds in the morning before

    breakfast.It lowers the blood sugar.

    My husband and father in law could illiminate taking medication with this natural

    drug.

    My husband used to take also a big bowl of Porrigde in the morning, but he was told,

    that he may only take 5 spoons of oatmeal (quaker) and to use water instead of milk.

    Milk has a lot of sugar.

    If you have to get up at night several times to urinate, so this is also from high sugar.

    Did they do blood test ,Glucose and HbA1C?

    ? If so how high were they?

    You can get a booklet from the Diabetes Organisation, were they tell you what and how

    much you can eat from everything.

    I go every 3 months with my husband to a Diabetes Clinic, first we see a nurse for half an hour, then a dietician for an other half an hour and at the end an Endocrinolog and Diabetes doctor.

    10 days before my husband has to check his sugar before all the meals and 2 hours later.

    (breakfast, lunch and supper). and make a list.

    Strip test of urine is not accurate, get yourself a blood finger test machine.

    My mother also got Diabetes from taking her life long Cordisone for another auto

    immune illness. Now she is on Immuran (Steriod Sparing drug) for the past 15 years.

    So by having a lot of members of my family being treated for Diabetes I have a lot of knowledge also about the different drugs and injections.

    At the beginning you should be able to control the illness with a good diet, sport and

    drinking fengreek water. It doesn't smell nice, but it really helps.

    Good luck

    Orchid

  • Hi Orchid gosh I'm glad I spoke to you about this, driving me mad the number of times I get up in the night, did think about getting a blood finger test kit as it would show which food is causing my glucose to raise, ( which kit do you advise) going to my last educational class next week where they are going to discuss about testing our glucose levels, 3mths ago my HbA1c was 50 just had another one taken for next week hope it is lower. Didn't know about the book from the diabetes organisation that would be great it's a bit hit and miss at the moment, I'm having a few rough days shaking and sweating think it is when I'm hungry and doing lots of walking,

    The classes I go to are basically quite helpful just wish they would give printed out leaflets at the end to help, try to write it down but they talk to fast.

    Will try the Funugreek when I get some if it saves more medication take enough now, Thank you so much for all of your help has been very interesting to talk you. Take care

    Val xxx

  • Hi Val,

    We use FreeStyle Lite Blood Glucose Monitor from Abbott Diabetes Care Inc., but there are many other kits on the market.

    Maybe you are entitle to get a kit at a reduced price or free of charge from Nat. Health after being diagnosed Diabetes. Ask your GP and if so, ask him for a prescription.

    Do you measure sugar level according European system 4-5,7 normal above Diabetes or

    American system 80-100 normal above Diabetes?

    HbA1C can't be 50.

    Why don't you google Diabetes Support Group England?

    They could answer all your questions.

    If you haven't got enough time to take notes at the meetings, why don't you record what is important for you with your smartphone?

    If I were you, I would make an appointment with a dietician for Diabetes from N.H.

    You can live a good life with a balanced and controlled Diabetes illness.

    Try to take life a bit easier.

    Stress and worries also elevate your sugar level.

    xxx

    Orchid

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