CELLCEPT

[doggydootwentytwo]

Hi everyone, I will be starting IV Cellcept next week. Just wondered how much success you guys have had with this? How long before you felt any benefit?

[NewEngland3]

I started oral cellcept 1gram BID a month ago---I am taking it for nephritis. I dont know yet--side effect of multiple bowel mvmts daily, insomnia and being ramped up. Why IV and not oral?

[doggydootwentytwo in reply to NewEngland3]

I have stomach ulcers

[larainehudson49]

I have taken mycophenolate for around 16 years, it kept me on an even keel. Had some set backs along the way but 18 months ago I was very ill with pneumonia and pleurisy. I was taken off it as they thought it was suppressing my immune system too much. I am now on azathioprine but not feeling the benefits as yet. Hope the Cellcept is successful for you.

[LouisaRose]

Been taking 1.5g of cellcept for over 10 years. I also have nephritis and it has helped keep me mostly stable. I've coped very well with it. No major infections.

[creaky]

I've been taking oral cellcept for about 4 years, It worked like magic to start with, but it's not so successful now.

I have to make sure that I get the cellcept brand as the other brands make me very sick.

I am taking a break from it at present as I've just had surgery on my foot, will be restarting when my wound has healed.

Good luck with your treatment, hope it works for you

[doggydootwentytwo]

Think Cellcept is the generic name

[WinterSwimmer in reply to doggydootwentytwo]

Cellcept is the brand name.

[Djlr]

hopkinslupus.org/lupus-trea...

Above “Link” to updates on Cellcept and other immunosuppressants.

Hope you are getting the advice from others that have used it to help you on your journey💜

[creaky]

Hi, cellcept and myfenax are brand names for MMF. In my case myfenax doesn't suit me, it makes me sick, so I have to have cellcept.

Everyone is different.

[Dalilatm]

Hi! I started taking it in 2015 and was on it for almost two years (tried both brands). I was having Lupus Nephritis. All went very well. Never had any problem with it. And last week I restarted taking it as on a flare again.

Most important issue: don’t get pregnant whilst on it!

Good luck x

[WinterSwimmer]

I’m sorry, I don’t know.

[Yllek]

I’m starting this drug next Week after my latest brain mri. I don’t have a lupus diagnosis but I have CNS Antiphospholipid syndrome and likely Sjögren’s. I’m very hopeful this will help my neurological symptoms.

Good luck.

[doggydootwentytwo in reply to Yllek]

All the very best to you too! X

[Joanna36 in reply to Yllek]

Hi Yllek, was the diagnosis quite easy to 'See' on your brain scan? I'm so very unwell I'm virtually bedridden. I have very very severe neuropathy and agonising head and brain function problems. I fear that these scans pick up nothing and further 're enforce the dreaded psychological diagnosis. I have sjogrens and multiple other autoimmune diseases. Sensory neuropathy and autonomic neuropathy have absolutely crippled me. These don't show on a scan which is devastating

[Yllek in reply to Joanna36]

So sorry you’re suffering. I did not have an easy road to diagnosis. I saw many doctors, some of whom originally diagnosed functional neurological disorder, which I absolutely knew I didn’t have!

My brain MRIs were originally ‘normal’ which made me look mad! Now they show small white matter foci which is non specific but assumed to be from the neurological effects of APS.

I met a fabulous neurologist (paid private and then he transferred me to his NHS clinic) and he did a PET scan on me. This showed I have severe hypometabolism in both temporal lobes and parietal lobes. This was very abnormal and I was started on azathioprine. However that drug didn’t suit me so I’m now moving to mycophenolate.

Good luck finding help and answers. I know how very difficult it is xxx

[doggydootwentytwo in reply to Yllek]

My experience was exactly the same as joanna. Brain MRI's always showed lesions and very poor blood flow,but it took 14 years to dx Lupus. The whole situation is unacceptable. Stick with us! X

[creaky]

No if the myfenax is suiting you there is no point in changing, I don't know about the costs