Can anyone tell me how they got on with this drug. Thank you.
Mycophenalate Mofetil 500mg: Can anyone tell me how... - LUPUS UK
Mycophenalate Mofetil 500mg
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molly19
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Pretty well compared to any of the others of same family. I’m on 3g daily now.
3 lozenge shaped pills in my hand
maggielee in reply to
Did you find 3g more or less tired? In addition to hopefully helping some of your autoimmune symptoms ? Still judging my increase....ml
in reply to maggielee
I’m still judging too Maggielee! It’s been 6 weeks of tapering from 2-3 and I’ve only been on 3g for 2 weeks so maybe a bit early to say. I was also given an IM steroid injection 2 weeks ago so that will have skewed things as well I’m guessing. I’m exceptionally tired just now even by my pathetic standards but as you know I’m moving house tomorrow so I’m sure this is contributing greatly! So far my bloods have all looked good - except for my inflammatory markers. And these are always raised to soaring because of my Sjögren’s associated polyclonal gammopathy.
I’m guessing it’s this side of things which is making me so extra tired too although I was hoping that the increase in dose and steroid would give me more energy I admit. I’m waiting for a full body CT and a Bence Jones my rheumatologist has ordered to hopefully exclude malignancy due to there being no other obvious cause ie pain for my Hyperviscocity. Sjögren’s can cause this and perhaps scleroderma can too - not really sure.
My personal suspicion is that it’s some form of ANCA negative Vasculitis. I did speak to someone the other day on the VUK helpline because of course Sjögren’s and Vasculitis often go hand in hand. She agreed my symptoms and signs tarried with Vasculitis and wondered if the Mycophenolate is actually doing enough or just masking things - and wondered whether I’d be feeling better on a big gun such as Rituximab.
She had some suggestions on how to approach this with my rheumi so that’s what I plan to do after I’ve had the CT and Bence Jones and results.
So it maybe too soon to know if higher dose of Mycophenolate is doing enough for either of us? X
maggielee in reply to
Ta for info & time hope your resting abit ? Much to understand from this health balancing act. Meds are a real query for me as well as symptoms (as to it all)...
Be nice to know if you could get Rituximab ? I believe here it's only given to RA patients (fight on Wendy). What a puzzle our lives are leading.... Hug hug hug & move...ml
in reply to maggielee
Interesting about only RA patients and Rituximab. I sure it’s used for non Hodgkin’s lymphoma and brain involvement associated with Sjögren’s right around the UK - and I know it’s used for Vasculitis sometimes because that’s what they told me on VUK helpline.
When I was getting my Iloprost infusions last week a chap was getting Rituximab for Ankylosing Spondy and a woman next to me was getting Infliximab for Crohn’s.
There’s another of the mabs (Tox…) which I believe is being trialled and showing good results in scleroderma patients at the Royal Free. But I’m a bit apprehensive about these biologics because I know they are now thought to erase the effectiveness of Covid vaccines to a great extent, if not entirely - so I’m not pushing for this.
That said I’ve tried 4 other DMARDs prior to Mycophenolate and failed all of them (allergies or intolerances). Mycophenolate is the only one I’ve tolerated and is the main one used for Scleroderma and Vasculitis patients who don’t have RA in their mix. Dr P did mention that, ironically, I’d be better off if RA came back than if my progressive overlap continues to be Sjögren’s and systemic sclerosis. Guessing the rarer the disease the harder it is to get targeted treatments or meet any treatment protocol 😥 xx
molly19 in reply to
That's good.
I was good on this drug but sadly had to stop it as I got dreadful acne that wouldn't go even with long courses of antibiotics. Hope it's successful for you ☺️
Ok with 2 (500mg) working my way up to 4 per day....still monitoring how I am reacting to it. ml
I start 3 tomorrow, it's ulcers and a sore tongue, but will give it time. X
Got on this after kidney flare and slowly increased to 6 tablets a day
How are you doing now.
Hi Molly19I’m on week 5 now of taking mycophenolate and have increased to 4 tablets a day, 2 in the morning and 2 in the evening. So far, so good. Don’t appear to have any side effects 👍🤞
That's good news pleased for you.x
Worked well for pain but made my hair fall out so I switched to methotrexate.
I take 4 per day been on. It for a year now alongside 1 hydroxychloroquine. I still get flares every couple of weeks but the brain involvement has decreased massively. Having problems with dry mouth and eyes at the moment even chipped my front teeth (not through grinding as they don’t reach the bottom😂). they were going to swap me to methatrexate but my liver function and inflammation levels went really high so had to come off the mycophenolate until bloods stabilised. I have been having bloods monthly since I started them as they are never quite stable! The swap was dismissed due to the liver function although they thought it was off antibiotics but checked started before! Ifeel since I had to drop the hydroxy from x2 to x1 200mg my tiredness got slightly worse but the rheumy said been on them too long at that dose and it’s not good for me (5year). Good luck 🤞
Kelbol1 -
That is really encouraging that the Mycophenalate has improved your neuro symptoms. Can I ask which symptoms got better?
Take care
K
I couldn’t remember anything names words how I had drove somewhere! headaches pain in sinus in cheeks, joint pain legs/arms, pins and needles, tiredness nearly all gone unless I am in a flare which is about every couple of weeks and some of these symptoms return x
