hello all,
I'm just wondering if anyone has had to stop taking Mycophenolate Mofeil , due to blood tests results or anything else, and if so, how fast was the dose reduced?
Best wishes
Elizabeth
MMF: hello all, I'm just wondering if anyone has... - Behçet's UK
MMF
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Bethb
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I stopped it just a few months ago as I was changing to a different drug. I wasn't given any advice so I just stopped it dead. I don't think I had any adverse effects although have been having a bad flare but that could be just the disease.
Thank you for your reply.
Sorry to hear that you are flaring up...hope it doesn't last very long.
I've been having an awful lot of gastric problems since starting MMF, but the consultant persisted with it. My latest endoscopy and colonoscopy showed oesophagus , Barrets oesophagus , gastritis and patchy inflammation with ulcers, oedema and some disturbance with the architecture , oh and abbesses throughout the colon. I feel very concerned the MMF should have stopped very early on. I've been taking it for over 2 years. He did switch from Azathioprine after 3 months , as that gave me gastric pain too.
I'd be interested to know what your new drug is.
Best wishes xx
Hi Bethb I've been put back on methotrexate, I took it several years ago but it upset my tummy but this time rheumatologist has prescribed injections to bypass the stomach but I've had 3 doses so don't know if it's going to help or not. I couldn't tolerate azathiprine. I hope your flare settles soon, it's a complex disease and none of us seem to have the same symptoms.
in reply to Rachel-Grace
Rachel-Grace, May I politely ask how much you were on and what drug you were able to switch to? I am on MMF myself but alas, I may be flaring, too... 
Thank you. Bethb, that sounds dreadful
HI Coniston11 I was on 3G, 6 tablets a day, but they had stopped working and I was finding I had constant ulcers. The rheumatologist has changed me to methotrexate injections. I was on methotrexate several years ago but it upset my stomach but rheumatologist says I should tolerate the injections. I've injected 3 times so far so waiting to see if they help. I'm on steroids at moment to help with the flare. I hope you feel better soon.
in reply to Rachel-Grace
Thank you so much Rachel-Grace. It seems lots of people are flaring at the moment. Perhaps, they might be able to consider to give you a biologic drug once you tried three DMARD? Hope your injections will work much better to control your symptoms. 
Hi
I had to stop first of all humira (and i was on a double dose of that) and then a few weeks later the Mycophenolate 2.5g all in one go due to persistent shingles on top of other problems. I can't increase my steroid either as it causes a dangerous rise in my eye pressure. Mycophenolate takes a while to stop having an effect as it is to do with your bone marrow and the bone marrow takes time to adjust to either starting or stopping - a kind of natural taper so to speak. I have had some return of symptoms but drs are hoping that the return of my behcet's won't be so severe as having the drug can sometimes modify your illness . Also spring is a better time to stop as the immune system is naturally quieter at this time of year apparently.
Some of these drugs are not fulfilling some of the hope placed in them for behcets- anti tnfs being a case in point.
Good luck with ant treatment you try.
best wishes
Sian
Thank you all for letting me know your experiences. Behcet's is so complicated drives me mad trying to figure out what to do.
Good luck .
Hi Elizabeth
I was on a very high dose of mycophenolate mofetil it had to be lowered due to liver function being high and crp levels being high but most of all my oesophagus was badly inflamed and I had to have a feeding tube fitted for 6 months to give my oesophagus a rest at present I take 250 mgx2 in the morning and 250mg x2 in the evening but over a year ago I had to be abruptly taken off it due to the above problems and they stopped it on the same day as my consultation so I do know you do not have to be weaned off hope this helps
regards
mandy lee raichura
Hello Mandy
That sounds terrible . I really feel for you . If I may ask....were your Behcets symptoms really bad ?
Also , I spoke to a pharmacist who gave me the impression that I should have been taking Omeprozole with MMF if gastric symptoms are experienced.
Hi
yes I have severe behcetts disease and yes you should take eamosoprazol or nexium if the mycophenolate mofetil is causing gastric problems it helps to tolerate the drug better it is a very potent drug normally used in transplant patients but it is used as a background immunotherapy in patients with behcetts disease hope this helps
mandy lee x
Sorry to keep bothering you...but we're you taking one of these to help tolerate the MMF but still the oesophagus got inflamed ?
I was on 2750 mg per day taken in 3
Yes that is right but I was on the large tablet form and my dose was 3 500 mg per day but then they reduced it to 1000 mg but changed it too 250 mg capsules so they were easier to swallow and digest x
Oh dear. How are you doing now?
I wonder why It took 18 months for them to start me on omeprazole (proton pump inhibitor) I'd been having gastric symptoms all the time. I was only started on omeprazole after the upper endoscopy showed Barrets oesophagus (abnormal cells - pre cancerous) . I'm feeling nervous about taking MMF . I am due to see the Gastroenterologist this week, and I will ask him about changing to something else - although I do feel he will say continue with the MMF.
Xx
To be honest I have tried other background immunotherapy and I think mycophenolate mofetil is the better one as long as you get the dose right and if you have got problems as you say with the oesophagus and if you are taking the solid tablets it would be better to change to the capsules at 250 mg to make up your dose as they are small and alot better to digest tge tablets are too harsh on the digestive system especially when it is compromised good luck let me know how you get on x
Hi. I discussed this with the Gastroenterologist. He did think it might be helpful to stick to the capsules. He said they are digested lower down the gastric system. When I asked if tge MMF could be causing the inflammation, he said in some it can do this. He didn't seem concerned. I have lowered my dose from 2.75g to 2.25g per day. I'm not sure how it's affecting me yet. I've had some lower gastric pain...but I've also had a cold virus so far. As you will know, it's really difficult to determine what's helping with this condition.
Thanks again for your help. Your so kind to take the trouble to reply , especially given your not feeling too well either.
All the best
X
MMF is a fairly benign drug. I never had any issues with my stomach lining. It's just it's not robust enough whilst I am on high dose (close to 3g) no other issues. But if you have pre-cancerous cells or have new symptoms whilst on MMF, it might be a red flag.
Bethb in reply to
Hi. Thank you for your message.
Yes, I have acquired new symptoms of upper gastric pain after taking MMF for 18 months. The upper endoscopy with biopsies, revealed inflammation and pre cancerous cells barrett's oesophagus.
I'm still taking MMF but the Gastroenterologist increased the Omeprozole and I'm now on 2g of pentasa twice a day.
in reply to Bethb
I'm terribly sorry to hear that, Bethb.
It's a tricky, serious situation, something I deeply sympathise with. Thank you for sharing. PS If I'm honest, I would personally ask to switch to another treatment if that happened to me. Cause and effect? Surely, that's something to address in my honest opinion. x
Bethb in reply to
Thank you. I will discuss this with my Behcets specialist on 3rd May.
Kind regards.
X
