Mycophenolate duration

[Lilodog22]

Does anyone know how long a patient usually stays on mycophenolate after stage 4 diagnosis of lupus nephritis? It has been 2 years and my daughter is now in complete remission. Her ana is usually negative but her dr would like to see her anti dsdna at 0. She is at a 5. Unsure if that can ever get completely get to a zero as well????

[poodlegal]

I too had stage 4 nephritis that was 4 years ago, my DNA normal now but always have positive Ana the consultant said to me if it was negative it would mean the lupus was cured and he said that's near impossible ?? I too asked when would I ever be able to stop meds I was told very unlikely I will, u see my belief was even if we go into remission that's because of meds that suppress the immune system if u stop taking them the immune system would over react again ?? I dnt know perhaps I'm wrong I hope I am, I dnt fancy been on these toxic drugs forever but maybe we dnt have a choice xx

[Fennella02 in reply to poodlegal]

I had wondered the same. I have been on Mycophenolate for 2 years now but I had a generally negative ANA before I started and no sign of other antibodies either. My blood markers are erratic and unreliable as my flares can relapse and remit with dramatic speed so I have no idea how they measure its efficacy other than by listening to me. I am, however, flaring regularly so clearly things are not under control and there has been no mention of stopping it yet.

My understanding is that people may enjoy periods of remission but I'm not sure that many go into permanent remission ie a cure.

An interesting post. I'll be interested to hear people's thoughts. x

[Lilodog22 in reply to poodlegal]

We are praying with a good diet (she follows low grain low inflammatory diet) low stress and plenty of sleep she can keep flares down. So hard to know what will happen unless she stops meds. We adore her dr. He never wants to see her in the state she was in at first diagnosis. She is 20 now and in nursing school. Not letting her disease hold her back. Thank you for responding. XO

[Lilodog22 in reply to poodlegal]

Thank you for responding. Very difficult finding research on mycophenolate duration. Did they ever put you on plaquenel as an alternative?? Or lower the dose of mycophenolate?? I'm happy to hear your nephritis is gone. I do thank God there are drugs to treat it. XO

[abby1649]

I have been on it for 20 months. My Rheumy in May 2015 cut the dosage in 1/2. He hopes to get me off the drug eventually. I'm thinking by next May as he believes in slowly but surely. So far no Flares or ill effects. I have SLE Lupus

[poodlegal]

I had to half it as my already low white blood count was getting lower I still seemed to be in remission on a low dose but reading everyone's replies it just shows we are all different because it's our own unique illness, I do remember a young dr saying to me perhaps in time you can go on to anti malaria drugs but it was a prof that said the latter so I really dnt know, when the lupus has attacked organs we really dnt want that to happen again, I wish your daughter lots of luck and pray that her remission stays for good

Xx