Has anyone remained in remission after initial Cyclophosphamine course, without going on a maintenance drug. Doc wants me to take AZA,.

[tonympb]

I am taking Prednisone at 12.5 mg daily. I am just seeking input as I decide how to proceed.

[Nadine99]

My husband has WG and had 6 infusions of Cyclo and there was no question that he would then have a maintenance drug & was put on Aza. although this had no effect at keeping the disease maintained. It was as tho he wasn't taking it!! He's now had to have another 3 infusions of Cyclo and is then going onto Mycophenolate. If you stay in remission without a maintenance drug, then that's got to be better than taking yet another drug.

[luggsey]

My Mum had oral cyc for about six months and she is now tapering off steroids, no other maintenance drugs required so far.

[tonympb]

Thank you for your replies, I just can't see how taking a another drug after 2 months of being off cyclophos

[Haggiss]

I have WG and had 6 months of Cyclo 5 years ago I was then weaned off the steriods and then put on 100mg of Aza. I then asked if I could start and reduce the Aza at first they were a bit reluctant but now i'm down to 50mg at my next appoint i'm going to ask to be taken off it completely. The thing is everyone is different so what works with one person might not work with the rest. I've found that keeping fit and healthy has made a massive difference to myself physically and mentally.

[Doghouse]

I should have had 10 infusions of cyclo got to my 9th then found it hadn't worked. I then had a course of rituximab 4 in fusions and now on Aza and preds down to 5mg but struggling with pain in different areas of my body at different times, but i don't want to increase my preds. I think it depends on what you suffer from and how bad it is , given the choice I wouldn't take mine but I know I have too keep my immune system down to stop it attacking me.

[jaydub]

2 months is about the maximum time that the Cyclophosphamine can still last in your system, from what I hear. Be a little cautious because these drugs take so long to start working in your system. I've been on Mycophenolate for three months and it's only just started working.

[Hidden]

The way my Rheumy put it was maintenance drugs sometimes have side effects but take prednisolone for long enough and the side effects will always cause damage!

We all react so differently that it can be hard to get consensus.

I haven't had cyclophosamide but am currently on MTX ( the highest dose and injecting it! ) and 9mg of pred reduced from 60mg. My goal is to stop taking pred, the MTX is helping me achieve that.

Have a full and frank discussion with your consultant. If they are good they will respect your opinions.

[tonympb]

Thank you all for your replies, I needed the additional input as I decided my direction. I have been fortunate to have Physicians that care. I want to be sure that alternative choices have been thoroughly searched out.

[Simmonds797]

Hi my husband has cerebral vas which started Sept2013. He finished his Cyclo mid jan is on 15mg of pred and 75mg aza. I am about to chase the GP re his drug regime as since mid Jan nobody has reviewed it and he's still on antibiotics. I think his aza is going up at the next appointment in 2 - 3weeks time, currently he is feeling tired and has aching legs sporadically, he did have a backward fall when he was on his own 2 weeks ago and not sure if he blacked out, was checked had a cat scan all ok. So my experience is that at the moment he is in remission on both, who knows, as someone said everyone is different but my gut feel is better to be safe than sorry...hope this helps a little

[tonympb]

Thank you for your reply and I am glad to hear that your husband is in remission. I am giving myself until this weekend to make a decision

[Rod-J]

Hi, I had the opposite experience, that is every time I came of Aza (a few months after a cyclophosphamide course) I had a recurrence of Microscopic Polyangitis (MPA). And the dose of Aza had to be high enough to work i.e. 100mg/od for me. These multiple recurrences resulted in me needing a kidney transplant 22 years ago. However, for other reasons (dangerous interaction with gout drugs, plus the effects on skin are considered fairly high risk), after 30 years I came of Aza a year ago. But because I take other (now improved) immunosuppressives for the transplant it was considered a safe choice. Hope my experience helps with your decision. RJ

[tonympb]

Thank you for your reply, you give a different insight, to see that you have maintained for 30 years gives hope to many.