Wegeners Granulomatosis

[hornet]

HELP we are so frustated my husband has been to the clinic today to be told that they want him to go onto Mycopheneolate he has recently had Retuximab and it doesn t appear to have worked even thou his results say it has but he is so ill, he also had blood in his urine on the last visit but thankfully not this time, we do not understand why they have put him on Mycopheneolate as it has never worked before, he went on that before Retuximab, when we asked the doctor & she said this was just to keep the Wegeners in remission, if this is the case he has never taken this before when he was in remission, but when we asked wouldnt he be open to further infection she said that he would be okay, but at the moment not trusting what they are saying....is anyone else having to take this treatment my husband is also taking 20mg of Pred, they have up this also.... he is so fed up and so worried.

[Chris-Bromsgrove]

Hi Hornet

I’ve been on mycophenolate since the beginning of December last year (2 grams per day). It is being used as a maintenance drug along with 5 mg of pred since my MPA went into remission in October. I did have a brief spell before that on Azathioprine but it didn’t suit me. So far, touch wood I’ve had no problems with Mycophenolate, other than the common side effect loose bowels. Like any other immunosuppressant it does make your immune system weaker and therefore more prone to infection but I do not believe it is any worse than the other maintenance drugs in this respect. I do hope your husband starts feeling better soon.

Chris

[quinnster]

hello,i had similar treatment,12 courses of cyco,followed by rituximab

also have always had blood in urine

what the doctors have done sounds perfectley reasonable,once the cyclo or rituximab is finished it is normal,to be put on either,mycoponolate,azathioprine or methotrexate

its also normal to stay on the pred

hope this eases your worries

[SCGUK]

I have had Rituximab a few times and each time I expect miraculous, immediate results. Unfortunately while it does work for me it can take about a month or so, so I'm not sure how long ago 'recently' is. My latest dose was in November and I'm still struggling with tiredness in the morning.

[Sarahjh2004]

Hi

I've had rutiximab which didn't work. I'm on 2.5 gms of mychophenolate per day as well a 40mgs of preds. Plus 11 other meds inc immunosuppressants.....

I now find any change in dosages no matter how small results in a flare..(the current flare has lasted 6 months from a 5 mg reduction)

[John_Mills Volunteer]

Rituximab is not the magic bullet. It works wonderfully for some, but not all, it does take some time to have full effect. Mycophenolate is a very effective immune suppressant, but as with all drugs, it doesn't suit everyone and it is a maintenance drug for use after Cyclo or Rtx. I have taken it for about 6 years now, with excellent results.

Perhaps if you would like to send me a message we can start from the beginning and see where things are maybe going wrong for your husband.

Which hospital does he attend?

[kath12341]

I am on mycophenalte and have wg have been on this since intial chemo treatment 6 years ago.

[Hidden]

Dear Hornet, I was diagnosed with WG in 2000 and have been on and off poorly since then until I was properly treated by a Vasculitis team courtesy of John Mills. I was initially treated with Azothiaprine but within a short period it dropped my white cell count down and I developed septicaemia. I was hospitalised and then commenced on Mycophenolate Mofetil and obviousely steroids so I do keep getting annoying 'flares' ie eye/ear/lung things' but they don't seem to be life threatening just extremely painful and distressing. I also have blood/protein/leucocytes in my urine too but it is not a definitive pointer to damage to major organs. You need regular blood tests and regular visits to a Specialist Vasculitis Clinic..please do not fight the system just ask for the best possible care ie a Vasculitis Team in your area that deals with this disease. I truly wish you well and hope you get the best possible care. x S&J

[hornet]

thank you all for the help and support it has made things a bit more clearer for us