Mycophenolate - how do you know it's working?

I started it a fortnight ago and my hands are swollen itchy and achy again...is it expected to relieve those symptoms? I realise it takes a while to kick in

[domayh]

According to Arthritis research it can take up to 3 months to kick in.

[Barnclown]

I'll try to answer your question, but as my symptoms are different to yours, my reply will seem slightly off the mark, but I hope what I have to say may be of some use to you

I've been on mycophenolate cellcept since early January. I started on. 500mg and felt some positive results within a few weeks! So my drs increased the daily dose to 1000mg, very soon, this dose helped me to feel better than I have since the 1970s.

However, on increasing myco to 1000mg, I did have a severe flare of my chronic upper GI symptoms, which took 7 weeks to settle down and led to full on gastroenterology investigations (endoscopy etc). But I'm glad I persevered with myco because it has given me back my life, with less side effects (so far) than prednisolone

I'm 60 and have been coping with untreated autoimmune multisystem disease all my life, unaware, until 3+ years ago, that I was diagnosed with lupus as a child & teen. when the nhs finally realised what has been underlying my dodgy health, I began treatment with 400mg hydroxychloroquine (plaquenil) daily, which I continue to take because it takes the edge off most of my symptoms, including sore aching joints & muscles. But only prednisolone, and now myco, give me back more stamina, resilience & less neuro/cerebral symptoms...AND myco has also virtually stopped the chronic aching pelvic girdle pain that even hydroxy hadn't helped much at all.

So, I'm well into treatment of SLE as my primary condition. Simultaneous raynauds & erythromelalgia are considered to be 2 of my secondary conditions.

Am sorry you're suffering these symptoms. But, as I understand it, domayh is right: myco, like hydroxy, can take several months to kick in....I think the speed of my positive reaction to myco was just lucky, as was the rate at which my seemingly one area of bad reaction cleared up (my upper GI flare)? Yesterday I was at rheumatology clinic where it was decided that 1000mg myco daily is my therapeutic dose, and I can have up to 3 x 4wk 10mg pred tapers per year to treat breakthrough flares. It seems that often treatments of conditions like ours consist of a cocktail of meds like mine....my advice would be that you keep a log of symptoms rated 1-10/10 and regularly check in with you gp &/or specialist nurse....my feeling is that it's important they know you're having these symptoms. Perhaps you're doing all this already....and you probably are taking other meds already too. My bloods were monitored fortnightly during my first months on myco, and more recently only monthly.

Take care. Wishing you all the very best

[trunchalobesity]

Bear, my lung function is stable for the first time in years. I am on the maximum dose. Please persevere. Hope it gets better.