Mycophenolate begone!

Hi, was going to post on Barnclowns myco thread but decided that any negative reaction to mycophenolate probably should go somewhere else.

Spoiler alert - not a positive post having not been posting here for a long time though I do read every day.

I have SLE / RA / Fibro, Reynauds, possibly vasculitis and IBD. I'm agoraphobic and a hermit, life is more simple that way.

Unfortunately, I am having / was having great difficulty with mycophenolate and having started it 10 months ago when the azothiprine ceased working, I was started on 2g myco day along with steroids, amitryptaline, diazepam at night and coprox...usually around 4-6 500mg day.

I was put on myco June 2016 and NOT ONCE was I followed up either by phone or seeing the consultant to which I have thrown my hissy fit. I saw the consultant in March as an urgent appt as I was losing the will to do anything and tired of being tired. I was upped to 3g, 40mg steroid a day (they are my nemesis), amitryptaline 50mg and the diaz.

Well... I made a big decision 2 weeks ago to now take my chances with the wolf and I have stopped the myco altogether due to horrific gastro problems.

Sick of being sick.

I discussed the stopping treatment with my GP on Friday and asked him to contact my consultant before my appt this week. I have taken poison after poison for the last 27 years and now, at 52, so am going with quality of life over quantity. I have been put on oramorph to try and control pain and reluctantly have persuaded myself to take steroids. Had a depo steroid injection 2 weeks ago so surviving in that right now and having made this decision feel stronger mentally that I am taking control of my life and meds instead in being pumped full of drugs that don't even get followed up.

I have been on pretty much every medication over the 27 years. So I'm calling time on the nasty drugs which really haven't worked with me. I'll take my chances for a while and see how I go, though I have told my family that I, as a girl, reserve the right to change my mind.

However, I do read here every day and it is so good to see how different meds affect others so will continue to lurk in the background. Wishing everyone continued success with the varying regime of meds.

26 Replies

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  • Sorry to hear of your problems.

    Unless I have misunderstood you, if you were put straight onto mycophenolate at 2g/day with no monitoring that goes against all medical guidance. There are strict protocols for the use of this drug (in my area it is consultant only prescription as well). You should be started at a much lower dose - 2g is my current dose and it took about 3 months to get to that level, starting with weekly blood tests then fortnightly then (and still) monthly bloods to check what it is doing to my liver, immune system etc. You should have been given an advice leaflet (something like this uhs.nhs.uk/Media/Controlled... and also have access to advice from a myco nurse through a helpline eg I contacted mine when I had to take antibiotics and she said to come off the myco. If this was not the case then someone has not been doing their job properly.

  • Hi, yep, the monitoring... or lack thereof, is disgusting. I did have the occasional blood test but being agoraphobic, I find it hard to leave the house... however, I kept phoning the consultants secretary to ask when my appt would be as I was seeing her every month/ 2 months - then they stick me on 2g day in June and was told how I would have to be sooooo carefully monitored and NOTHING, NADA, ZIP... hence my hissy fit when I did get to see her in March at my local cottage hospital (I find it difficult to go the city hospital).

    Anyhoo, at that stage and being so desperately DESPERATELY ill and unable to walk amongst other things, I think she went into panic mode at the lack of follow up, that she ordered lung function test, X-rays of hands and feet (have fused foot) and severe boutonnière deformities (awaiting ortho surgeon letter), heart scan and ulstrasound on thickened tendons with protruding bumps on the front of my shin and behind heel and new nodules on my feet! Had lung function test and oxygen diffusion is not brilliant but not too bad so the chap said, but those results have to be read in with heart scan (something to do with the left side of heart) to see if I now have internal organ problems. Haven't even got an appt for the heart scan yet.

    So, she did do the business after my hairy eye ball... but that in my opinion, is simply not good enough. My mental state has deteriorated badly as it is so hard to keep going at times... yet today, you wouldn't think there is a thing in the world wrong with me if you saw me. Damned diseases. I do count my blessings but I'm so tired of being ill.

    I've now had 19 operations in my life and waiting to have my fingers operated on. I know she will not like me going off my meds BUT, I'm now taking control of what they put in me. That makes the noise in my head a little less loud.

    Many thanks for your thoughts and reply.

  • Hi there. I strongly relate to your list of diagnoses and your decision to quit meds. Although I'm only seven years in I have already suffered many severe intolerances including anaphylaxis and pancreatitis to Sulfasalazine, Methotrexate, Hydroxichloraquine and Azathioprine. Now on 2000mg Mycophenolate heading up to 3000mg once my liver settles. I'm not sure it's helping much really.

    I'm newly on Sildenafil (viagra) for Raynauds as well as many other meds. I'm noticing that I'm starting to lose words and wake with bizarre moments and just feeling generally fudge. I really can't believe how many drugs I take for a deeply sensitive /allergic person with a very multisystem Sjögren's- I keep wondering how this has happened to me and blaming myself for agreeing to it all!

    I'm assuming that you were monitored for Myco correctly by your GP practice and the neglect you refer to is from the rheum? No way would I agree to taking all these meds if I didn't feel properly monitored by both sides of my healthcare team. In fact now even make my practice print off my monthly bloods so I can keep track - especially valid when I recently dricovered that my liver Alt has doubled and no one fro the practice had told me!

    Meanwhile i'm starting the autoimmune protocol diet in the hope that it helps my guts and improves the neuro symptoms. Perhaps then I can slowly taper off most of my meds apart from Levothyroxine. When I was first diagnosed with RA I was terrified that my agonised joints would deform if I didn't take them. My rheum at the time kept reinforcing this. Then he gave up on me.

    Now I have renovated and was rediagnosed with primary Sjögren's. I am told that immunesuppression should help keep organ damage (small vessel disease of the brain and small fibre neuropathy) away or slow it down. I often panic that I'm poisoning myself though. But I have at least been seen by the rheumatolgist every 4-6 months to date. Your wait was shocking!

    So far i don't have any significant side effects from Myco and I've been on it for nearly six months. But then I didn't start having nausea from Methotrexate until I'd been taking it for six months or anaphylaxis from Hydroxy until 18 months! So I do strongly relate to your feelings about getting off it all and taking your chances. I hope you stay around or come back often to tell us how things are going for you.

    Best of luck.

  • Thank you, it does help to talk to folk who know what this is like. When I was first dx I had so many different regimes of meds and as the years have gone on, I've taken pretty much everything. Sulphasalazine, D-penicillamine, Plaquenil... etc. Methotrexate worked for me for 10 years, then stopped, so I started injecting MTX, at which stage, my LFTs went through the roof. So I went onto Azathioprine and felt good for a while... I was even on here a ways back singing it's praises ... then that stopped and straight onto 2mg myco... when I went up to 3mg and still had such problems ALONG WITH the nausea and "how quickly can one get to the loo" problems... that was the final straw. I'm going to get this stuff out of my system and see how I go. I was taking 80mg of prednisolone... damn I hate steroids having been on them for 6 years in the early days... but they do work... then of course, they have their own side effects. They do screw my head up.

    Of course, famous last words... if my lungs and heart show any problems because of SLE etc, then I may have to reconsider, but I'm in fighting mode now and my GP (who has been part of my life for 19 years) and also got my hairy eyeball down the phone on Friday, having not called me back for 10 days (ahem), has been instructed to get hold of my consultant before Thursday, to ensure she knows it was HIM who cancelled my blood tests 2 weeks ago and advised me to stop the myco for a little bit. What he didn't realise is I'm not going to restart it and to be fair, he knows me very well and that I've hit rock bottom again, says he understands and will support my decision to stop it and will let the consultant know, He will manage my pain and hopefully the hand surgeries will be sooner rather than later. It's hard enough making myself go to the hospital which is only 10 minutes away without having a confrontation about my meds, so at least she will know prior to me arriving.

    I do feel very chemo brain at the moment... often forgetting words and trying to get sentences out which simply don't come and then losing track of conversations with my son.

    I guess feeling a tad fragile and vulnerable has kinda forced me to make this decision, just so I have some modicum of control. I need to take control of my body.

    No doubt I shall be bleating when the pain is unmanageable ... though I rarely talk out loud, but my home is my safe place and I'll deal with that at home. I don't like asking for help but I have a great OT who has played an important part in assisting with aids of all sorts so she comes to the house and if I get low, I can ask her to visit.

    Wishing you well and many thanks for replying. It does make such a difference to those who can relate. Best wishes to you.

  • Hi sorry to hear you're feeling so ill and depressed. Just wondered ,has anyone mentioned the new Biologics ? I know someone who tried all the usual meds. without much success and a lot of side effects. Her consultant started her on Adalimumab (Humera) and she never looked back.hope that helps .All the best Elfie

  • Thank you for this information - I have been reading up and weighing up... I will ask the consultant on Thurs. Many thanks.

  • Hi dragonfly

    So sorry to read of all your health problems and your very brave decision to come off Myco!. Do understand why you've done this as it was shocking you didn't get the right follow up with it!. I can relate to to your feelings of despair I would imagine at being ill such a long time going thru serious procedures and having symptoms and side effects, despite taking lots of drugs!. You wonder what your doing after a while so good on you for taking back some control.!. You'll feel better for that. I do hope the steroids help , hope you take calcium or a bone strengthener tablet .

    I also had to come off Myco after taking it many years and becoming seriously ill with persistent diorrhea!. It had been a helpful drug but things suddenly changed and like you I now am just on the steroids. I also have similar conditions to you IBD, Vasculitis, SLE Raynauds and whilst I worry about steroid side effects all the time , don't like them being my main treatment , I've managed well with my conditions on them so I hope I give you good heart for you!.

    Good luck for your hand op , hope you'll keep us posted as to how you get on. X

  • Ha, that made me smile about the calcium tabs... nope, never even been offered anything like that despite being on steroids for 6 years in the early days. I've had a number of bone scans...the first being the injecting me with radioactive stuff and being in a tube and the hospital LOST the results!!!! Have had 2 bone scans since which didn't show anything significantly wrong but it was something I meant to bring up with the GP - shall add this to my list on Thurs.

    As for the diarrhoea, yep, its been horrendous and the stomach pains and nausea, ugh ugh ugh. No more. I'm done with that. Just so sick of it all. I also have chronic fatigue syndrome, as I imagine most of us do, ankylosing spondylitis... ha, don't know what else I could get. I haven't actually got a diagnosis of IBD and asked for both "scopy's" which I had done in 2010 - it showed at that time I had aphthous ulcers, but not loads and was told it could be the early onset of Chron's... but having asked my GP on Friday to do a referral now as it's been so bad, he said until the myco is out of my system (he wants me to ask the consultant how long that takes) he will not do the referral as it could just be the myco that caused this. I have to say, that particular problem does appear to be getting a tad better now now I haven't taken any for 2 weeks - so perhaps he is right on that. I've had IBS for so many years but over the last few months, the minute I ate anything, the cramps started and immediate dash for the loo. Good job I don't leave my house!

    The consultant suggested taking Nifedipine last June for my hands and toes and mottled skin; basically, it was mid summer and I had chilblains, still do... however, as I didn't see her for another 9 months, nothing was done about this. Again, just more meds...

    Ah well, guess I have lots to discuss on Thurs! Thank you for your help - this is reminding me of things I need to list when I see her. Thanks, wishing you well.

  • Good luck tomorrow Dragonfly. Let us know how you get on. I'm not surprised your fed up with it all, you've got so much to deal with!. One of my Rheumy's said you can have a one off attack of colitis on Myco and then be fine. I wasn't so lucky but hope you will be now your off it!. Glad there's some improvement. Fingers crossed for you. X

  • Thank you, feeling prepared and my Mom is going to accompany me due to my a-phobia and also so she can witness what the consultant says. I've a big long list of questions now and photos to the ready so I think I may overstay my 10 minute welcome, but a gals gotta do...and all that. Thank you so much for your kind thoughts, will let you know how it goes tomorrow.

    Great folk here, so very much appreciated x

    (nausea better but loo visits still a problem... ack!)

  • Hello dragonfly. Am vvvvv much feeling for you and relating to everything you're sharing with us. Managing all this is ultra complicated and you are clearly an expert. Am taking my hat off to you: RESPECT.

    There is probably nothing I can add to this wonderful & important discussion other than this:

    my feeling is that mycophenolate is able to help some of us, but it seems to me that its risk:benefit side is only just beginning to be understood...compared to, say, prednisolone's risk:benefit side, relatively less is understood about myco. So my mental jury is out at the mo on just how much of an all round "good" pharmaceutical myco is 😏.

    When I started on myco, my collection of diagnosed chronic upper GI conditions all flared for 3 months making me feel pretty awful. But I immediately also felt great improvements in my levels of stamina, resilience & joint/muscle pain. So my medics & I decided to persevere. After those 1st 3 months, my upper GI stuff settled down & even began to benefit from daily myco ongoing. But I was ready to stop myco if things hadn't gone well....partly cause forum friends like misty had told me their stories of having to stop myco because it gave them significant problems.

    Am wishing you every best wish & am so glad you posted. Good luck with everything 🤞🤞🤞🤞

    😘🍀😘🍀😘 coco

  • Thank you coco, I am so glad it is working for you and that the gastro problems improved. I was started on 2g and then upped to 3g but I can't tolerate the nausea and diarrhea any longer. The 2g wasn't doing anything for my RA/SLE etc and I was having to just take more and more steroids. Anyhoo, like all meds, they work for many and not for some and I just hope that I can get my pain management controlled - I'm so pleased they are working for you and fingers crossed, one day they will find a cure for us all. Thank you so much and will keep y'all posted.

  • Thanks...well, so far so good for me 😉 on Cellcept

    But my closest local lupus friend had such persistent diarrhoea on Cellcept that our rheumatologist tried her on mycophenolate myfortic...which she has done vvvv well on. But you've probably considered myfortic...

    Take care 🍀😘🍀😘

  • Hi Dragonfly,

    Sorry to hear that you are having a rough time on mycophenolate, you're lack of monitoring sounds bad as there can be some adverse effects with this drug and by regular monitoring, any problems can be looked at.

    I have been on mycophenolate for 2 years and take 2g a day with 5 mg of Prednisolone was initially on 35mg and as far as I am concerned the drug has made a big difference to me, I was in a wheelchair but this drug helped me to move to a walking stick. I am on 6 monthly checks with my consultant and see lung, gastric, hand specialists to name a few. I also have my bloods and urine checked monthly. However not everybody reacts the same to drugs, what is good for one person is not necessarily good for someone else.

    I am surprised that you have not been looked after properly. Cowhide has provided some good information on the monitoring, I too was given a leaflet on mycophenolate and given details of Arthritis Research also.

    Good luck, ask plenty of questions and sometimes coming off a drug has to be done carefully by lowering the dose gradually.

  • Hi, unfortunately I couldn't open cowhide's link but rest assured, I plan to ask a lot of questions on Thurs. I honestly cannot even remember when I last had a pee test done - which you'd think with SLE they would be doing regularly. I do just feel as though I've dropped off the planet and they don't give a damn. Re: coming off the myco, that's the reason I insisted that it was the GP who contacted the consultant and that he was the one who cancelled my bloods. Then she can't come back at me on it, I hope. I can't wait to get my hands sorted - even trying to type is a pain as I have a 4th finger that is so bent it touches my palm the whole time. I'm trying to adapt but a little tired of adapting - the surgery for the trigger fingers is so quick (youtube is my friend) and simple but what they will do with my 4th finger, who knows - just want it sorted.

    I'm so glad you've had such a good response and have managed to get out of the wheelchair - that is a massive positive so I wish you all the very best for your continued good response. Many thanks.

  • Hi dragonfly.

    Boy do I know how you are feeling. Like your abandoned and they don't care how you are.

    They always seem to have a very cavalier attitude to our health then suddenly they realise how serious our situation is and they change their tune.

    It is only after 2 heart attacks and a byepass pass in the space of six months. Stopping taking methotrexate by my choice because it was doing beggar all and much crying and gnashing of teeth have they realiased that just sticking you on a drug and giving you an occasional blood test isn't good enough. Along with my very forceful sister in tow they are now sorting me with scans , x rays and suggestions of various other treatments.

    I honestly feel we have enough to contend with ,without putting their unsuitable treatment in the mix as well.

    I truly hope that you can manage and your life takes a better turn.

    I actually considered stopping all my medications a couple of weeks ago, but I was going to start smoking and drinking again as well because the last time I felt at least halfway decent was 5 years ago when I abused my body with nicotine and alcohol.

    Do keep us posted on how you are doing and I am sending love and hugs to help keep you going.

    Karen x

  • Thank you Karen - it's exactly that feeling of abandonment that is bothering me so much... I just don't understand how they can put us on these meds and not follow up - even after numerous calls direct to the consultants secretary who said that I could not see the consultant as I was due for a telephone consultation for the nurse - which NEVER happened. Unbelievable... oh gosh, I'm such a whinger right now - feel like a 2year old stamping my feet. Many thanks for your reply - it's good to talk.

  • Thank you all for your replies, sorry I haven't replied back yet, was too knackered yesterday but hope to reply tonight. Very interesting comments and given me more to think about, especially the biologicals which I am reading up about ... gah, the side effects for all these drugs is just GAH!

    I'm feeling stronger about my decision but dreading seeing the consultant on Thursday as it's bad enough leaving the house and then knowing I'm walking into a kinda confrontation of my lack of care and yet I understand how overworked they are, but that doesn't mean they shouldn't be watching over people who they hand out drugs like sweeties to, and you're left to get on with it.

    "Abandonment" is exactly what it feels like and unless you're having a flare on the day you see them, they think you're tickety-boo. Ha, fat chance... I usually end up flaring straight after but now I photograph the rashes, the joints, the rashes and my iPad will accompany me so she can see what she doesn't see in the 10 minute appointment.

    Thank you, will reply properly later. X

  • Just a pointer - as you list RA ammongst your diseases - Mycophenolate isn't used to treat active RA because it's seen as ineffective. But if yours is active and you have tried and failed at least two Disease Modifying drugs (DMARDS) including Methotrexate - then you may well meet the criteria for the much more expensive anti-TNF drugs or Biologics - which are often much better tolerated I'm told.

    To learn more about how this is assessed by your consultant you should look up DAS28 - the scoring system used for how active your RA is currently. I think you have to score about 5.2 to meet the criteria. Worth looking into prior to seeing your rheum - but you may need to come off everything with their support anyway in order to get an accurate picture.

    Sorry if you know all this already but just in case you don't... NRAS HealthUnlocked is also an informative place to ask about this next tier of drugs and how people get on with them re side effects etc.

    I was newly (mis)diagnosed put on Methotrexate for RA in 2011 and didn't get to see my consultant again for 9 months. Finally my GP asked me to write to the medical director of our health board (Scottish island) to complain about this which I did. My rheum was quite unapologetic about this and explained to me that the pressure of seeing all new referrals within the correct time frame meant that those such as me were less of a priority.

    He agreed this was far from ideal but felt my GPs were very good at getting in touch with him by phone or email if they had concerns. I tried to explain that the GPs felt that it wasn't their responsibility to monitor me for disease activity or decide whether or not the drug was being effective.

    When I left for the mainland a few years later he told me that I had certainly kept everyone on their toes! I think this was his way of saying that flagging things up to them myself (i.e. lots of "hairy eyeballs" as you described it!) is the only way to get anyone to act. This is the unfortunate reality of such a beleaguered NHS rheumatology service. Such a huge additional drain on our very limited energy levels and extra strain on our fragile health I know🙄😕

  • Ahhhhhhhh, this is so interesting - when I saw the consultant last June, she said myco was the last chance saloon as I didn't fit the criteria for the "other" medication - I can only think now that she meant the antiTNF meds (and I would imagine due to the cost). I had never heard of the DSA28 and have just done that and put a low CRP of 7 in as I don't know what my CRP is at the moment - and it came out as high disease activity. Of course, the thing I often find is that my bloods can show low CRP when I feel like death warmed up and am flaring - so how does that even happen? It drives me nuts because I then feel a fraud and only I know the pain I'm in. The other thing is, I look FINE on the outside and yet feel as though I'm being eaten from the inside out.

    I'm not looking forward to Thurs BUT I do feel stronger now I'm taking control... I just have to hope she will listen and not just look at the outside of me and think - "well she looks OK". I've taken photos of the nasty tracking rashes on my ankle at the moment and one can hardly miss my deformed hands so, we shall see.

    Thank you for the information about 2 DMARDS and the DSA28, most helpful and I would never have known about that. Many thanks.

  • You're welcome. Need any more info then NRAS community are usually pretty on the ball. You would probably have to be off steroids completely to get a high CRP that reflected your pain. And even then some people's inflammation never shows in their blood. Very unfair when it comes to anti tnfs and the das 28.😡

    Mine is usually raised whether in pain or not - but sky high if in pain or ill. But then I too generally look pretty well even when I feel dire - as I do currently 🙄 It's just an autoimmune thing.

    But a good rheum should look beyond bloods and our outward appearance anyway. Best of luck for Thursday. X

  • I get the opposite sometimes - there have been times over the years when my CRP (or ESR then PV as was) is sky high and yet, when the GP has called me saying that my results were abnormal, you could knock me over with a feather as I could be feeling OK. However, over the last few years, I rarely have extreme results even when I am so ill. That just annoys me then.

    The times I've said the very same thing... 'it's just an autoimmune thing" - makes me smile that someone says that too.

    Thank you very much Twitchy - I hope you improve VERY soon.

  • Thanks Dragonfly - you too! 🤗

  • Thanking everyone for all your input and listening to my whining.

    I feel I'm now much more equipped for the convo with the consultant, stronger in my head. Will let y'all know how it goes. x

  • Hello again

    I've been doing a lot of research since talking on here and am starting with rituximab on Tuesday with my first infusion. I have decided to write a blog commentary on what happens from day 1 but I don't know if I am allowed to put up a link to my blog. Maybe Ken or an admin can let me know.

    I'd like to thank you all for your input and listening to me. I had never heard of biologics but I will give this a go, at present I'm not taking anything other than painkillers (and boy, am I in pain) ... the consultant started me on hydroxychloroquinine which I hadn't taken for 25 years but my stomach reacted immediately and was very poorly so they've been stopped.

    So as of Tuesday, another attempt and I hope I will have a good reaction. If anyone could let me know from admin if I can link my blog (though I've no idea how to blog, I've just been rambling) , then that would be great. I have written to Lupus News to see if they will publish it as a running commentary on exactly what happens to me when I start this week.

    Thank you all so much for pointing me in another direction having wished to give all medication up xx

  • Good luck for Tuesday. I would be interested in your blog. X

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