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LUPUS UK
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Mycophenelate side effects esp headaches

Hi. I’ve just started taking a very low dose of mycophenelate at one 500mg tablet once a day to increase in a couple of weeks to twice a day then increasing slowly until I’m at 2000mg a day if I can tolerate it.

I’m currently taking these at night with food in order to minimise any side effects impact until I am settled. Anyway I am 4 days in and was warned about stomach problems etc but the last 3 nights I’ve been waking up in the middle of the night with a horrendous headache and waking up the next morning absolutely shattered. The first night was just overnight and cleared by mid morning. Yesterday it went into the morning and didn’t clear until lunchtime. Today the headache still hasn’t totally cleared and I’m still absolutely exhausted.

I’ve also just finished a course of antibiotics for a uti aweek ago. I’m not sure if the headaches are related to the mycophenelate and this is a common side effect which will clear or if it’s possibly being caused by something else. Has anyone else had anything similar when they’ve started on this medication?

Thanks in advance as always x

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Hi mifford. When i began myco, the protocol was similar. I too had a sort of headache which seemed v like my characteristic migraines and also i had increased fatigue - v like you’re describing. I crossed my fingers & hoped the “headache + extra fatigue” were due to my body adjusting to myco. I guess that was it, cause i’ve been able to go on to great benefits from 1000mg myco ongoing...and for sure it has uncreased my stamina & resilience, but i’ve also had to take daily pred alongside it. am taking myco cellcept. It’ll be interesting to read others’ replies. Take care & good luck

XOXO Coco

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Thanks BC. This is very much like my migraines and sounds like a similar reaction. It’s reassuring to know this isn’t just me and I shall persevere for a while in the hope they disappear soon. Can you remember how long this lasted for you?

I’ve been given cellcept as well but my consultant is currently refusing to add in pred despite my wish to try a low dose as I have no organ involvement at this stage. We are having a quality of life vs medical necessity standoff at the moment and I have ageeed to try myco on the understanding that if this doesn’t work there is nowhere else left to go but pred. I’m hoping she proves me wrong and your experience fills me with hope that she might :)

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Good thinking....Makes sense! But do keep a little log of what happens when & the severity etc...i did & if i can find my log to check when head stopped the aching i’ll get back to you....my memory is that the aching lasted at least 7-10 days and then tapered off. I was saying to myself, back then, that if the ache became more severe or any other dodgy symptoms started i’d see a GP right away! Am sure you’re as gently as poss while you’re trying myco out...take care & good luck 🍀❤️

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PS have your rheumy & gp agreed a ‘shared care plan’ for your myco treatment? If your plan is like mine, you should have v specific blood tests quite promptly...the intervals of testing are less frequent once you’ve proven to adapt ok to myco

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I was already on testing for mtx so we have just increased the frequency to every two weeks for 3 months then I will review where I am and see whether they can go back to monthly or stay at every 2 weeks for a bit longer. My gp and rheumy don’t really talk to each other though other than a letter 2 months later following my consultation. I’ve found that managing it myself works better so haven’t really battled that one :)

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Sounds good: realism + vigilance: you are already expert! 👌🤞🍀❤️

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My understanding is that myco should be taken two times a day as it's effectivness to keep the constant dosage in the blood is 12h. Are you taking it only at night or morning too?

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Just at night at the moment. I’m incredibly reactive and very intolerant of tablets so this is the last one left before we have to move to steroids - which I actually wanted but consultant didn’t. She is starting me off incredibly slowly in the hope my body doesn’t reject this treatment as it has so many others. Once we know my body has settled at this dose and side effects recede I will then increase to twice a day and repeat the process increasing by 500mg each time until I am at 1000mg twice a day

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Got it. The two medications are not exclusive thou. I have been on both mmf and steroids for years.

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Unfortunately you’ll have to persuade my rheumy more than me. She won’t add any steroids in at all at the moment as I don’t have organ involvement. My argument is that I also don’t have a quality of life, I’m having to get depo injections 3 or 4 times a year anyway and I don’t want to wait until we have no choice and are left having to use higher doses. I’d like to try a very low dose of pred which might well mean that the myco has a better chance of working. She has agreed that if the myco doesn’t improve my quality of life enough then we’ll revisit the discussion.

I see her viewpoint but I’m adamant that the final decision in either direction should be mine but I have agreed to try her route first. Hopefully she’ll prove me wrong.

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That's odd that she she thinks no organ involvement means no steroids. Usually that's the case with myco. People don't get myco unless they have organ involvement and usually get that only after hydroxycloroqinin and steroids failed. That's what my rheumatologist says. I only got myco after he saw my lungs involvement...myco has risks too. You just have to manage risks accordingly. Hope you will find the right cocktail for you. Do not give up your quality of life!!! I used to have one day a month where i felt ok. Now i have about 10 bad days each two months. That's a success for me and i have so many more good days...

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The myco is literally the last attempt before steroids as I have reacted to everything else and can’t take nsaids at all. I was on mtx but my photosensitivity is still off the charts and the photobiology unit have decided its the lupus driving that. When I look at my blood tests over the 2 years I’ve bern on mtx it’s not improved anything - my crp stays at around 8 so although I’ve stanilised I’m always on the verge of a flare. My rheumy thinks a crp of 10 is fine but at that level I can barely function and my tendons are extremely painful with severe fatigue and I need a steroid injection!

Photobiology at Guys have pointed out that I’m only keeping it under control by barely leaving my house which isn’t much of a life. They have made it clear that as far as they are concerned I may be managing but it’s not under control. With that in mind spending 3 days a week sick as a dog from mtx just to stay feeling rubbish became less appealing. Based on that we are trying myco to see if it makes a difference but personally I expect very little based on previous experience and with these side effects I’m looking to see some improvements in my blood tests quick or I’m going to want a further discussion about trying my preferred route. It’s fine the consultant wanting to try it first but she’s not the one who has to deal with how it feels!

Having said all that she’s usually very good at listening to me and working with me so that’s why I am trying her route first as she isn’t one who’s arrogant enough to ignore her patients.

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Yeah I find that odd also. @Mifford I was first started off on steroids as soon as I was diagnosed in sept this is before my lupus got severe and had any organ involvement. My rheumy also put me on just 10mg back then due to me having a very deep open wound or he would have put me on a bit of a higher dosage. Once my kidneys got involved in Nov I got put on all three: 50mg of pred, 400mg of hydroxychloroquine and gradual dose of Mycophenalate from 500mg to 2000mg over the space of 3 weeks. Steroids work within a few days max and the other two can take anytime between 3-6months to be effective. As for side effects you just have to bare with it unless it’s too much, have to weigh the pros against cons. When I was on the initial 10mg of steroids I didn’t really notice any side effects until I was on the higher dose. I’m on quite a lot of medication so I’m not sure what is causing which effect but I’m aware they all do. However I can’t complain it’s better being alive than losing my kidneys 😭 You just have to ask yourself if you can cope with the negatives and I really think you ought to see a new rheumatologist or just call them up on the unusual behaviour. Goodluck x

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It gave me a lot of problems headaches, stomach pains and sickness,and as had shingles before kept flaring that up, I had to stop.

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I feel very sick today and stomach cramps. Last night I was doubled up with tendon pain in my ankles, knees, hands, hips and my ribs. After 5 days of it I’m getting to th point of wondering how long to give it

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It could take months for myco to work. That's why people usually take steroids while waiting for it to work. Make sure your myco is coated and delayed release! That's an important factor in how much you could tolerate. Sorry you are going through this. It sounds terrible...hang in there

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Funnily enough I did ask if there was a slow release version so knowing how reactive I am I’m not happy that she hasn’t prescribed this. The whole reason for starting me slow is my stomach reactions to meds in the past, including stomach bleeds, so if an SR is available you’d think I’d be a prime candidate.

To be honest the whole thing has become ludicrous. I was meant to be seen by my nurse at 6 weeks to monitor how I’m reacting and switch tablets then if needed but they had no appointments before 3 months. Last week that got cancelled and switched to 6 months and I don’t know if that’s with the consultant or the nurse. The gp has no idea what is going on and I don’t seem to be able to find out what the plan is if I can’t take these. I don’t blame the consultant or nurses as it’s the system that doesn’t work and it’s been stripped back so far that I don’t know how they work within it any more. I’ve learnt to stay very much on top of everything myself but if I didn’t the whole thing is set up for something to get missed at some stage and is bordering on being downright dangerous.

Thanks for the advice on the SR and I’ll look into this further as well.

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Good luck! Im taking generic version of this one, enteric coated rxlist.com/myfortic-drug.htm#

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I've been on myco for approx 7 or 8 weeks after having to stop aza. Like you I was on 1 x 500 each evening for the first month, then it was increased to an additional 500 each morning.

I've had very few problems, the only one was when the pharmacist changed the myco for a generic which gave me violent gastro troubles! Back on the one I started with and I'm fine now and the increase has not had any issues at all. It's actually been much easier to tolerate than the aza was initially.

I too have an on going pred debate with my rheumatologist who is adamant I can't have it long term. Which is difficult for me because I've been flaring almost constantly since I came off aza last November. The only time I feel ok is when on short term pred. I posted recently on here about this because he said short term means no need to taper, but what if the short term has only short gaps ie a week or so, in between??? So currently been off since the weekend and feeling awful again - like hit by a train - and can't take them because not long enough of a gap.

My rheumatologist is very much against steroids. Yet like yours, is happy to give me a depo, 3 times a year or so! I don't understand either because to me, side effects of steroids v quality of life is a no brainer!

I hope the myco works for you and you (and I) get the quality of life we all deserve. X

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It sounds like we have a lot in common! My rheumy told me it wasn’t something she’d agree to without there being a detailed discussion about the risks and side effects etc. I told her too bloody right and this wasn’t a decision I’d made lightly without already doing a great deal of research and weighing up both sides. It definitely isn’t an easy decision and I’ve been the one resisting it until now when a previous consultant had tried to put me straight on pred as a first line treatment. I also asked how much better is a drug that I have to inject every week which burns my skin and blisters incredibly painfully if the slightest drop gets on my skin (I was on methotrexate).

I’m 47 years old and I’ve spent the last 28 years rollercoasting between episodes of feeling awful from the lupus (which was only diagnosed 7 years ago!) or from the medications side effects. If pred means I need a hip replacement in 20 years time at least I might have spent that time in between able to walk without crutches and pain and able to actually have more than 3 days a week where I can have any kind of life.

I was happy on the mtx having stabilised because I was nervous about them messing around with me and sending me into another spiral but since about September I’ve been spiralling again anyway so the down sides start outweighing the upsides again. If that’s going to happen and I’m going to be all over the place again then I’d rather go the route that I get more benefits than downsides rather than carry on down a route that makes me feel so rough that I’ve had to take 3 days off work doing nothing already. At the moment this feels like a mtx day that won’t stop and it’s not fun.

Now my only debate is how long I give it.

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We're the same age with a very similar history!

I've had OA in knees and other joints since my 20's, told wear and tear which I thought odd since so young. Skin issues and hair and scalp issues since my 30's. Referred to rheumatologist in 2012, finally diagnosed in 2014.

My problem now is that I have really low white cells and the culprit could be hydroxy, but I sincerely hope not as it has been my life saver! I asked my rheumatologist last visit if there was any medication to increase them and he said pred!!!! But it's apparently not an option! 🙄

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I sometimes wish that consultants could be forced to live with the consequences of their decisions for a couple of weeks so they can see the impact it has and I think the outcome would be very different.

As I said though mine is usually very good at working with me not at me so I’ve accepted her opinion for now and she has agreed to be open to that discussion if this doesn’t work. I’m quite forceful at putting my views across to doctors now (politely) and pointing out that I’m the one who has to live with the consequences which seems to get through. She has accepted that my quality of life has to come into that decision and not just blood tests that tell her nothing about the day to day living so I’m hopeful that if they myco doesn’t work then she will allow me to lead the decision more. We’ll see.

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Hi Mifford,

Sorry to hear about these side-effects. That does not sound very fun. As others have perfectly said, it is a fine balance of what is tolerable to you. Hopefully the side-effects will subside so you can see if cellcept becomes a benefit to you, because personally, I've found this drug to be very effective on several fronts and I find I can get some really decent normal spells.

It has been my experience with Cellcept that the side-effects do calm down. I started very slow like you have. My Rheumy explained this was because, like you, I don't have organ involvement and therefore we have time to allow my body to adjust a bit more gently. It has taken me 10 months to get me to 2500 with the aim for 3000/day if necessary. Partly that was due to not tolerating the generic version and having to start again.

I've also got a steroid sparing Rheumy. : ) But so far I'm pleased about this and I'm sure it would be an option as well should it be necessary. There is another version that is more pure called Myfortic if the side-effects are actually caused by the excipient. So just know there is a little more hope out there and though it looks like you might have the same slow route I've had, I have had some good results. And because I've suddenly found I've got significant deterioration in my spine at 50 years (after prolonged back pain sent me to x-ray), I'd rather not pummel my bones anymore than necessary with steroids. So I do think they have good reason why to be steroid sparing. Certainly in my case anyway. But it's all such a struggle and so very personal to each of us.

Gosh, I hope your headaches ease really soon.

Panda x

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Thanks Panda. The headaches really are bad - I got up from the loo during the night and every step made my head throb.

Having looked at my meds I think I have been given a generic called myfenax and I hadn’t considered that as a possible cause. I have to have brand specific on a lot of my meds, especially the thyroid ones, because I am so unbelievably reactive to very small changes. I get told they should be the same but it is clear that from test results etc that I’m not imagining it and that I really do react differently on certain brands.

From the replies it looks like myco is worth giving a good go so I think I may give the lupus helpline a ring and see what they say and whether they want to change brand or if I should just keep going. The rheumy did mention that there was another version they could possibly try if needed but that it was unusual to use it and they’d save it until needed so I wonder if that is Myfortic.

Many thanks for the help x

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That’s a great idea. Defo give them a ring.

There are 3 kinds: 1) Myfenax which apparently works for many, but not me ( I often need certain brands too- very sensitive). 2) Cellcept which has taken me about 1-2 months each increase to settle the stomach. 3) Myfortic much more expensive and some don’t even offer it, but it is out there so do persist if you find a difference otherwise.

Good good luck to you!

Panda x

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Checking the myfenax I have it is made by Teva. I don’t know if it’s related but I couldn’t take Teva thyroxine. From memory they were then taken off the market due to problems with it so I’d assumed that was why but it could be something in their fillers.

I’ve left a message with rheumy and will see what they say. I’ve described it as feeling as though my body is trying to reject the meds so I’ll see what they come back with.

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So to update the lupus nurse rang me back and told me to stop taking the myco for now and then once everything has settled to start back at either 1/4 or 1/2 tablet and see how that goes. In the meantime she’ll talk to the consultant tomorrow and we what she wants to do

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Hey, that's great that they got right back to you! When it comes down to it, what are a few days here or there in the whole scope of things? Sounds a good idea to chill and get as far away from that brutal headache as possible; then try again.

I will pipe in (possibly wrongly) that I read Mychophenolate is not to be cut in half or even handled much due to its toxicity. When I was really struggling with stomach problems for 4+ weeks on the Cellcept, but had such a good response otherwise I didn't want to stop it, the Rheumatology pharmacist gave me a prescription for 250mg tablets to intersperse with the 500mg ones. And that way I could just ease into the dose. Turned out I was at the turning point and didn't need them. But having just upped them again only 3 weeks ago, with repeat side-effects, I was awfully tempted to go back and fill the prescription. So I do know they have half dose, but I'm not sure about quarter. And if it were me, I'd really want to know it was safe to chop those tablets up if that's what they're suggesting.

Have yourself a good sleep tonight without the splitting headache I hope!

Panda x

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Oh wow thank you. I will certainly be checking this. I have another blood test next Friday and am away next weekend so I’m not starting again until after I have those results and my weekend is clear so it gives time to find out.

I honestly do not know how I would have got as far as I have with this illness without the help and support of this board. I even mentioned severe fatigue to the nurse who rang me back yesterday from the helpline and she told me she’s not surprised as it sounds like it’s stopping me sleeping. Words totally failed me at the idea of explaining to someone who really should know better that lack of sleep and fatigue are two totally different things!!!

Anyway the fatigue has reduced. The nausea is still bad but I’ve got hold of some complan which has really helped and off the back of that I have managed to eat a small amount of chicken and rice tonight. Now to just get shot of the headaches. I’m starting to suspect the meds may have caused a bit of a flare and these might be coming from my neck which might take a bit longer but we shall see.

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I know exactly what you mean. The help and even the info I've received here from just reading other's posts is invaluable! God, that nurse and her view of fatigue...! Shocking.

It might be worth looking into how long the side effects take to wear off, if you still find you're having them, so you can get a handle on what might be coincidentally caused by something else and what could be caused by the drug -- in particular, for example, if you've been prone to headaches.

Hang on in there.

P x

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