Cyclophosmophide dosage? Too high??

[HopeinTN]

That was the plan until they realized I have a nodule that is getting bigger in the right lung. Surgeon wants to check it in 3 months and decide then on surgery. If this is disease activity then not sure why all the CTX hasn't been working.

[annekat]

That was the plan until they realized I have a nodule that is getting bigger in the right lung. Surgeon wants to check it in 3 months and decide then on surgery. If this is disease activity then not sure why all the CTX hasn't been working.

Maybe the 50mg. day isn't enough. I know you and they have thought of all the ins and outs. I seem to remember you saying you felt pretty good, except for the pain, which I hope is better now..... So maybe it is WG activity or not.... I know you are waiting to find out more.... I think maybe 2 weeks has gone by since the start of the 3 months! Waiting is never easy. But if anything serious happens, you will be in good hands with your docs, I'm sure.

[mzschaumkell]

Thanks for your replies, I didnt realise it was high until I was reading the Mayo Clinic and John Hopkins info on the recommended dosage!!

He did have kidney involvement, would it be that they are trying to hit it hard for 3 months to try and get the kidney function back up to normal??

I will call the doctor today and ask if we can drop it down to 200mg.

Phil, I am not sure about Rituximab, we never got offered that, just got put on the current regime. Is that drug suitable for those with kidney involvement?

[annekat]

They COULD be trying to hit it hard with the high dose, but that is pretty hard.... maybe they could consult with a known Wegs specialist like the ones listed on the Vasculitis Foundation website? It's interesting that you say he has no side effects.... sounds like the ideal patient.

As for RTX, yes, I'm sure it is used for people with kidney involvement or any serious cases of Wegs where CTX might be used instead. RTX is very expensive and involves getting infusions, an all day procedure, I think, though I haven't done it. Many think it should be the first choice for treatment as it is less toxic than CTX. But I think there are issues with it, too, for some people. A forum member said it is not used much in Australia, could be true for NZ, too. I myself was happy with oral CTX, taking it at home and not having to go through the infusion thing, and am happy with how it worked on my lung involvement. I made sure to drink lots of water to avoid the dangers to the bladder.

[woz]

Hey Jo, I have kidney, lung, sinus and muscular/joint involvement, when I first got medication, I was on 200mg cyclophosmophide, 100mg prednisolone,
bactrim forte 800mg/160mg, every day, after a week the dropped my prednisolone down to 80mg, a week latter down to 60mg, and there I stayed for quite a while, the bactrim I take only 3 days a week. I am now on 100mg of azathioprine, 10mg prednisolone, bactrim still three days per week. my doctors plan is to
taper the pred to zero, then stop the bactrim, stay on 100mg azathioprine for three more months, taper that down to 50mg for maybe 6 months, then taper to zero, hopefully. Fingers crossed, hope it works.

Regards Woz

[mzschaumkell]

Doctor hasn't responded yet, I am tempted just to drop it from what I have read!! All the research concludes you should be on the cyclo 1-2mg for each kg of weight. He is 100kgs....so is on more than double.

No side effects yet Anne which is awesome..but early days yet. RTX I don't think is funded by our government as a standard wegs treatment, however is funded for some cancer treatments, we could look at getting it privately though if it is much better than the cyclo.

Woz, your regime sounds similar, except they put my partner on 60mgs pred for a month because he responded well to the IV red in hospital, tapering to 40 next month and then slowly...how long did it take you to get onto the azithioprine? What was the extent of your kidney involvement and how are they now?

[woz]

It took exactly 3 months, which is usually the minimum to get on azathioprine, methotrexate wasn't a option because of kidney and lung involvement. I am very lucky to have only minor involvement, no protein in the blood at the moment, I had a small amount of protein in the blood at the start. My kidney specialist wanted to do a biopsy on my kidneys, but because they have responded well to the drugs, he has put it off until needed.
I was diagnosed and started treatment, start of April 2013.

Regards Woz.

[mzschaumkell]

Thanks Woz, glad to see you are doing well!! Are you working at all? What was your creatinine level?

[woz]

I have been back at work for about 6 weeks, limited hours for the first 4 weeks, full time for the last two weeks, my muscles are finally catching up
to where they once were, I have had tuck shop arms for a while(for those who don't know, the flabby bit under your arm when you flex your bicep).
My creatinine levels have gone down to 65-70, range is 60-100, my kidney specialist was very happy with them last visit, told me to see him in 3 months, I still get my Gp to check my urine every 3 weeks. To be sure, to be sure. I find the more I know, the easier it is to maintain, and try and keep ahead of Mr wegs.
At the moment I have a full blood count and my crp checked every week, just to make sure things on the inside are going forward, not backward.

Regards Woz.

[Reetsky]

Hi There, I was initially prescribed 100mg of Cyclo and 40mg of Pred. I had a moon face with the Pred that slowly reduced as the lowered the dose over time. However, I was only on the Cyclo six weeks and had to be taken off it as my white blood cell dropped drastically. I was changed to Cellcept (Moefitil) and couldn't tolerate that either. I am now on Myfortic (another form of Mychophenolate) and once again have had to stop due to WBC and low haemaglobin counts. Once counts come back up they have put me back on the lowest possible dose of Myfortic possible. I had 3% kidney function and stage 5 ckd when I became ill a year ago and I'm still not stabilised. Going on to an ACE inhibitor tomorrow because my blood pressure and protinuria are too high. Welcome to the world of Wegs (GPA)!!! Oh! And Mychophenolate changes my temperament! I get quite anxious and often narky. Explained this to my Doc who said "we don't know what effect all of your meds, taken together, have on your system but its the only way we know how to keep you alive and dampen down the Wegs!!