I've been taking my generous concoction of meds seemingly a-ok, until now. I started Mycophenolate early May, without issue at first, just a little rolling about in the belly. But in the last week I am getting such nausea. It is waking me and being an ugly presence without stopping for hours. I had only one bout of diahrrea a couple weeks ago. So there doesn't seem to be relief from the cramping. Normal bowel movements now and the feeling remains. Anyone had this? Did it go away? Anyone have a solution? I'm wondering why it's taken so long to appear (5 weeks) and if this is normal. I've called my GP to ask for anti-emetics. She'll call me back today. Do you have any suggestions of ones that work for this?
Thanks everyone.
Panda x
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Hi there. I took MMF at max dose 3g for 14 months but was taken off it by the CTD doctor and my rheum because they were concerned it was contributing to my stomach problems and other symptoms including tremors - and were unclear about whether it was actually benefiting me at all. I have to say that tremors still come and go but my abdominal issues have settled. I didn’t have nausea but I did have loss of appetite and upper abdominal pain and my constipation worsened.
However I was put on a new IBS-c drug prior to stopping the MMF and it made a huge difference to me so I’m unconvinced that MMF was the cause of my problems. All the things I was relieved to stop taking it for have continued, pain flares are more frequent and my pelvic pain has returned with a vengeance. The only thing I would say is that I lost a lot of weight while on MMF because my appetite went away. But in my case this was a good thing as I’m overweight.
Also I once again have trace blood in my pee and it went away on MMF.
In answer to the 5 week question - absolutely I’m afraid. I have tried 5 DMARDs in the past 7 years and found that my bad reactions to four only started when each drug had built up in my system. From anaphylaxis to pancreatitis to extreme nausea - these all started between 3 weeks to a year and were all confirmed as drug reactions.
Ah, I see... So it is normal. Damn! But I really appreciate your reply Twitchytoes. There are some overlaps with your experience that are very helpful for me.
I developed sudden constipation and excessive bloating last September BEFORE all new medications, such as Hydroxy, Mycophenolate and Montelukast. I take daily macrogol sachets in order to keep normal movement. I trialled going off it and trialled different food changes many times and each time I went straight back to pellets and ballooned even more. So I know something has altered in the bowel mechanism and I'm convinced it's from autoimmunity. My Rheumy won't acknowledge bowel in her domain. However, the dermatologist came up with potential mast cell disorder, which can cause gut problems I have discovered through an exchange with StickyBloodMentor. Thus the Montelukast leukotreine inhibitor I'm taking. Though it's not changed anything... Though there are other options to try there... Would you mind giving me the name of your IBS medication that has been so successful? Did you have bloating too? I would like to take that to my GP if other Mast cell meds don't make a difference.
I also have muscle twitching, not tremors as you mention. Suddenly twitching and fasiculating started happening all over my body including inside it. It comes and goes. This began around November or December, which was also before I was on any of the immunosuppressant drugs. So I wonder if yours would have developed anyway.
I'm gathering from your response that Myco was very helpful to you in some areas -- protein in urine and pain. Since other meds have managed some symptoms and others are still there despite being off the Myco, do you think they might consider putting you back on it? I've just seen you're in a lot of pain right now. That's terrible. I'm sorry to read that.
I had exactly the kind of constipation symptoms as you describe. Thought to be slow transit issues relating to my Sjögren’s. The name of my constipation med is Constella (Linacloctide). It has been life changing for me although the laxative side of things needs careful planning I’ve found. But it has helped enormously with the bloating and pain. I have Mast Cell problems too. X
I wondered about pseudo obstructive motility disorder. It seemed the only thing to make sense until I began to understand about the mast cell potential. Do you have anyone working on the mast cell issues with you?
Thanks so much for the name of the med. Going straight into my back pocket.
Hi Panda, sorry to hear you’re feeling like this, nausea is such an awful feeling 🙁
Have they raised the dose recently? I felt like this on this drug, not too bad on one tablet (500 I think) quite nauseas and palpitations by the time I raised to 2 tablets then felt awful by 3. I tried to go back down but by then had developed such an intolerance that I was having difficulty breathing, shakes, passing out etc so it wasn’t the drug for me! It also completely took away my appetite and I lost weight very quickly.
Sometimes, if it’s not too bad, it’s a case of persisting through the initial side effects as they do often resolve as your body gets used to it but as twitchy and I find, some of us seem to get these reactions which get worse around the 3/4 week point.
It’s always hard to decide isn’t it? Are the side effects worse than the disease effects sometimes? 😬
Have you tried any others? Sometimes it’s case of trying different ones until they find the one for you. I’ve tried a few now with big intolerances but have been on weekly methotrexate injections for 6 weeks and seem mostly fine - even though that’s the drug my rheumy said most people are intolerant to.
Thanks so much for your reply Melba1. You had a terrible go of things with the Mycophenolate. I guess there is a fine line for deciding what is worth staying the course for. So, it ratcheted up for you too at 3/4 weeks. I've not had as severe a reaction as you've had. Hardly much noticeable until week 4, while on 4 tablets/day. And now at week 5, it's worse. Last night was one of the most uncomfortable nights I've had in ages with my bowels. I was standing up, lying flat on the floor, walking around chairs in the lounge unable to get comfortable. My stomach was utterly distended for hours and hours, plus there was the cramping on top. I guess I'm wondering if the meds are exacerbating whatever has been happening to my bowels over the past year. But if it's the meds, I'm reluctant to give up yet, as I am noting that the sun has not been so intense with me in the past week, as well my flushing reaction to temperature changes has also lessened. So I'm aware that something might be working.
I've taken the Stemetil this morning. We'll see.
It helps so much to know others reactions in order to work out what is right for me. I've not tried any other immunosuppressants, so it's good to be reminded there could be other options. Thanks again for your response.
That sounds miserable 🙁 Can you speak to your rheumy to drop the dose down? If you were ok on lower dose that might still work to keep the disease at bay but not give such bad side effects? X
I think that is going to be my next move. Terrible night again last night even with the anti-emetic. Curled up in a ball and moaning with nausea. I've been on chemotherapy before and though it was worse in many respects, there was the knowledge that the feeling would end, which made it more bearable -- in its way. I'm just going to stick out this week with present dosage and talk to my Rheumy on Wed about dropping dose. Thanks so much Melba1.
Hi panda 2. I was recently put on mycophenalate 1000mg in morning and 1000mg. I too am on a concoction of meds. All was well for a month then I had awful stomach cramps, constipation and diarrhoea. My consultant dropped my morning dose to 500mg and the problem stopped instantly.
Good luck, hope you feel better soon and keep us informed on how you are getting on xx
OH! Thanks for that info ange726. That's potentially very helpful. I am on the same dose that caused you this same prob. (2 in the morning, 2 at night). I see my Rheumy next week, so considering I've begun to have some positive responses in other areas, maybe it's just a simple fix of dropping the dosage. Excellent and hopeful!
Yup! Just posted a new one: Mycophenolate update after Rheum appt. Warning, it's long and gets a little philosophical, but it was 3 in the morning after all. : ) Thanks for your interest ange726. x
Dear Panda, I got terrible nausea with mycophenolate after 11 days. Tried it in oral solution instead...same result. I just could not tolerate it which was such a shame because for the first 10 days I felt amazing but had to stop. You can get prochloroperazine maleate prescribed for nausea which can work well. Wishing you the very best. Lily
Sorry to know it was intolerable for you because I have the same feeling that it might be doing me some good. So pleased you mentioned Prochloroperazine maleate because it's exactly the meds my Gp prescribed and I've taken my first one this morning. I remain pretty rumbly in the tummy right now, but it has only been a couple hours. : ) Your post is reassuring. I appreciate it.
I ended up with awful gut problems on mico - and was changed to myfortic which is easier to metabolize version of the same stuff and much easier on the gut. It worked - and im happy to take it forever.
Nonetheless I'd advise anybody with SLE Lupus to get a referral to an auto immune savy gastronterologist and always be kidney vigelent.
The Myfortic! -- I've heard of that. Thank you. And great advice on the gastro too. That has been on my mind, but I don't think I would have said it at this next appointment. Now I will, cause god only knows when my next one will be.
Hi Panda, I had really agonising stomach cramps, gassiness & bloating as I increased my dose of Mycophenolate. I could get up to 2 x 500mg morning & night but any additional tablet to try & reach 3g per day make me very ill.
My consultant was very encouraging & persuaded me to persevere & gave me some info about the drug that's made all the difference. Apparently Mycophenolate has a 12 hour life once taken & if possible, the two daily doses should be taken 12 hours apart, after food as normal.
Worked a treat! Side effects disappeared within a week 😊. I've been taking the 3g per day dose for a year now & only get digestive issues if I push the 2 doses closer together e.g. less than the 12 hours. May be worth a try for you as well? Take care x
Thanks very much for your input. And yes - the agonising cramps, etc - it's exactly like that. I've actually been taking these 12 hours apart by accident, without knowing about the 12 hour life. So that's interesting and makes sense. I do wonder that the food issue could be playing a part. My Rheumatologist told me to take them a half hour before I eat or 2 hours after so they absorb better. There might be a fine balance here. Thankfully I will see her next week. Armed with all these responses has helped enormously. I'm particularly encouraged by everyone who really feels this drug is making a difference. Because I've been caught by surprise that it seems to be doing some good for me too. I had just about resigned myself.
It can be so confusing - my consultant told me to make sure I took them with/just after a meal! They've certainly helped me, esp with skin issues. Take care x
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