Mycophenolate : My consultant is quite keen on... - LUPUS UK

LUPUS UK

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Mycophenolate

LilyMistri2 profile image

My consultant is quite keen on increasing me from 1000mg to 1500mg. Anybody had good results from increasing to this? I’m worried about hair loss, chills and being more vulnerable to covid-19.

34 Replies

Hi! Just say I’m on 1.5g am and 1.5g pm of mycophenalate for lupus and have been now for about 18m or so. Prior to that was on lower doses of mycophenalate but they weren’t working and prior to mycophenalate was on azathioprine. I was diagnosed with lupus six years ago. I also take some other medicines too eg hydroxychloroquine, mepacrine. My personal experience has been very positive, my hair has finally grown long and thick again for first time since being diagnosed and my bloods and urine are much, much better. You will need to talk in detail with your consultant re risks and benefits for you but just wanted to share my positive experience (especially re hair) in case helpful. Best wishes

LilyMistri2 profile image
LilyMistri2 in reply to Andfiona

Thanks for your reply. Your experience sounds great. I too was on azathioprine and then got switched in 2019. X

Hi LilyMistri2 I have been on 1.5g of Mycophenalate about 2 years now & its been fine. I was on lower doeses before & I was constantly getting sick was having a lot of flare ups. Its been fine so far with this dose, less hospital admissions, less infections & less flare ups. I have also been fine with covid. I also take a few others meds with it but literally within a month of being on 1.5g my bloods shot up & there was no protein in my urine :)). I thankfully haven’t noticed any side effects with losing hair. Xx

Thanks for sharing your experience. It seems to be very positive. X

I am taking 2mg. and have been for more than 2 years now. I understand your concerns about increasing the dose - in the past I have been very scared of taking a bigger dose of MMF. But I feel physically better now than I have at any time in the last 18 years and as long as I follow the rule to take it away from food I have no side effects. This is the best drug I have been prescribed since being diagnosed with SLE. A biased opinion, based on my own experience - but if I were in your shoes I'd take it.

Thank for sharing. I was wondering what you mean by taking it away from food? Do let me know. X

It is supposed to be taken on an empty stomach.

That’s fine. I usually take mine a couple of hours after breakfast. How about you?

11.00 and 11.00

Me too.

Good point on taking it on an empty stomach. I however cannot tolerate it on an empty stomach and take it after breakfast and after dinner. This means the absorbstion is less but still OK if otherwise not able to take it. So i would assume w food im only getting 2/3rd of my 1500 dose.

LilyMistri2 profile image
LilyMistri2 in reply to Tanitani

I find doctors are relaxed about this. After all we have to live with these drugs long term, so we do get them in our system one way or the other, which is good.

The point is not to give you an upset stomach, which is one of the main side effects. I can’t handle the effects of taking it on top of food.

It definitely makes sense! However, my doctors recommended me to take it after food and with Omeprazol in case it upset my stomach. I've been taking it without Omeprazol and before breakfast and it doesn't upset my stomach as much as I thought.

It’s all very complex isn’t it! X

debsgm profile image
debsgm in reply to WinterSwimmer

? 2mg or 2g =2000mg. Must be 2000mg? 🧐 or 4x500mg tablets?🧐

Apologies for being punctilious but dosages matter,😥

Xx

WinterSwimmer profile image
WinterSwimmer in reply to debsgm

Yeah - sorry. Mis-typed. Of course it is 2000mg or 2g.

Hi

At 1 point I was on 2000. My hair was ok but I too sepsis !! from a uti infection! Hospital great but I was removed from this dose and never went back to it.. still unsure why he put me on such a high dose. It lowers the immune system.. just ask lots of questions..

Sorry to hear about the sepsis! How scary! Yes I will ask the consultant some questions. I have an infection on my leg since August, I want to ask him if taking MMF will make it better or worse.

Hi there! I'm currently taking a dose of 360, twice a day. That's like 1440 a day. I started taking it around April, when I had anemia and a non scarring alopecia. As I started this medication, my anemia disappeared and my hair grew back strong. I immediately started feeling better. I'm taking it along other meds but it's been working for me. I do have heard from other people who take it that for some it makes them have a loose stomach. Diarrhea.

Thanks very much for telling about your experience. It sounds like good news. Btw if you got a cold, did it get worse on this higher dose?

I would be careful of ant infection on immune suppressing medicine chat it over with your doctor.. it’s a hard balance to be on medication you need and escape side effects.. take care always xx

Thank you! And you take care too x

Well, surprisingly, I never got one. Even with the whole pandemic thing, I never caught a cold or anything like it.

That’s good!

I take 2grams daily and I agree with WinterSwimmer 🙂

I take that much. I dont have any side effects. Not sure if it is doing anything better but I have been on this dosage since the begging of taking it almost 15 years ago. Im still on it. I dont think this medication has much effect on covid vulnerability. After 2 vaccines i measured antibody levels as i was concerned about the same thing you are and had way above average level of antibodies against the spike protein.

LilyMistri2 profile image
LilyMistri2 in reply to Tanitani

That sounds good! X

Hi, I was on azathioprine and was constantly flaring. Then I was switched to 1500mg of mycophenolate. Been over two years and I have felt much better and more stable. Got Covid in first wave, as hubby works on frontline for NHS. I was very poorly but obviously that was before jabs were discovered.

I have been fine since having my three primary dose Covid jabs. Due Covid booster this evening. Best of luck to you. I am really pleased I am on the dose I am on to help keep me well and stable.

Renu xx

LilyMistri2 profile image
LilyMistri2 in reply to Renu

Thanks for your reply. Sorry to hear you had covid! I’m glad you’re ok now!x

I am on MMF and take 750mg. When I started about 14 years ago it upset my stomach and was advised to split the dose. 250 x 3 daily and no problems. I also take with food. My bloods are stable, I have lovely hair and feel mentally and physically well. No chills either. so that is my advice - split the dose xx

LilyMistri2 profile image
LilyMistri2 in reply to IMWilson

That sounds good. Can I ask what milligram tablets you take? I thought only 500mg was available?

IMWilson profile image
IMWilson in reply to LilyMistri2

I am given a months supply of 250mg capsules x

LilyMistri2 profile image
LilyMistri2 in reply to IMWilson

Great to know that.

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