started on cellcept today.

[crackers]

that's my understanding too phil.
john

[Luce]

I was put on Imuran/Azathioprine after my first 12 week course of cyclo but it didn't work for me and I flared. In fact I flared so badly I needed another 12 weeks back on cyclo to get my ANCA right back down.
I think Imuran was given before anything else as it's probably the cheapest drug to try - that's the way the NHS tends to work.Methotrexate has never been mentioned to me, I was told after my flare the options were Mycophenolate (Cellcept) or Rituximab. So we've gone with Cellcept, fingers crossed eh?

[Jack]

Nothing to do with the cost Luce. The established treatment regime (such as there is) moves from Cylophosphamide through Azathioprine to Cellcept. The exact drugs used and their names vary from country to country Each in turn is less effective at controlling the disease, but far less toxic.
I don't know if you have seen the original packaging for IV Cyclophosphamide. It is black and yellow with DANGER written on it!

[crackers]

the itching went a step further this morning.i was sat on the chair with the little dog asleep next to me.my inner forearm was resting on her back and after about 5 minutes my arm started iching.when i looked it was covered in white lumps where it had been touching the dog.i've had dogs all my life and this particular dog 2 and a half years and i've never had an allergic reaction before.as it happened my wife was at the hospital this afternoon for a test so i called in to rheumotology and told them about this.their response was to get a book on side effects and said "well it doesn't say anything here about itching".i told them that it does on the leaflet that comes with the tablets so they consulted the book again and said "nope nothing here".they said i must be allergic to the dog so i told them what i posted above but they seemed unconvinced.anyway the outcome was to stop taking the cellcept for a few days,see if the itching stops and then start again.has anyone else had a similar experience?
john.

[pberggren1]

I do get itchy sometimes on my face and neck. I don't know if it started when I started taking the Cellcept in January or not. There could be a link here. I don't get any lumps or rashes that I know of.

[RCOSSIO]

That's what I have been told least toxic...and I believe "not sure" but Meth and Cyto are carcinogen, whereas Cellcept is not.

[RCOSSIO]

no fairly good no itching

[Geoff]

[quote=crackers;3292]hi luce.they tried me on cellcept in 2007 on 2000 a day but i ended up with pneumonia because of it.

Hi Crackers, Like you I am on Cellcept (MMF) for over a year now and at present am taking 4x500mg daily. Concerned to read about your pneumonia problem. What was the link with Cellcept? My other meds are Omaprazole for stomach protection, 15g pred and pill for blood pressure. Only problem at moment is bad sleep (which my doc says is down to the Cellcept)

[Luce]

Hi Geoff

I always thought it was the pred that affected my sleep as I've suffered since being diagnosed, no matter whether I was on cyclophosphamide, azathioprine or Cellcept. I don't nicely come round from sleep any more, I wake up 3 or 4 times in the night and am instantly wide awake! Quick nip to the loo for a tinkle, a good half an hour staring at the ceiling and I'm back in the land of nod.

I'm also taking omeprazole and co-trimoxazole, an antibiotic to prevent PCP lug infection. Do you not take this one Geoff?

[Geoff]

Hello Luce,

I guess you mean Lung infection and not something to do with my Lug Holes! Speaking of which my ears have been playing me up of late. No I dont take co-trimoxazole. When I was first admitted to hospital, the scan of my lungs was quite good. Not to say I shouldnt be taking a preventative medecine tho.... So many parts of the body to think about!.. Love your part of this country. My favourite place in the world is Durdle Door. Many happy childhood holidays in a caravan.