Cyclophosmophide dosage? Too high??

[mzschaumkell]

Hi guys, quick question you may have read from my other posts, my partner was diagnosed about 4 weeks ago now. He is on oral cyclophosmophide, but I have been reading alot of other posts and it appears he is on a really high dosage.

He is taking 200mgs twice a day (400mg a day). Does this sound correct? He has a script for this for 3 months from what we have been told and then onto a less toxic drug.

Thanks

Jo

[woz]

Hi Jo, I am only fairly new to this myself, I have only just come off cyclophosmophide (on it for 3 months) , now on azathriopine. I was on a dose of 200mg per day, 100 in the morning, and 100mg at night. My doctor told me that it is usually based on weight x 2. IE 100kg(my weight approx) x2. Weather the doctor has a reason for such a high dose, you will be best to ask him. I found it is very important to have very close contact with your doctor, or doctors, I have 6. My main doctor is a thoracic specialist, he is just brilliant, I regard him as a close friend. All my other doctors, are also great, and between them all, they have helped to get me where I am today.

Hope things get better soon.
From across the Tasman ........

Regards Woz.

[mzschaumkell]

Thanks Woz. he was also 100kgs when released from hospital and from what I have read 1.5-2mg per kg is standard. His case is not particularly severe, kidney's were impacted but still has over 50% function and no scaring from what biopsy showed. Might call them tomorrow, I think they have done it incorrectly...mind you he has had no side effects at all...

[renidrag]

I would ask the doctor about the dosage and remember in the meantime to drink a lot of water to rinse out the bladder. A lot of water.
Dale

[pberggren1]

Unless he weighs around 500 pounds, 400 is way too high. Have you guys asked the docs about using Rituximab?

[HopeinTN]

That dose sound too high. I started at 150 per day and then down to 50 where I am now. I'm on month 21 though. I hope 3 months does the trick for him. It can't hurt to question the dosage with his doc. Like others have said, water is very important!

[annekat]

That dosage does sound too high. I'd think even 200mg. per day would sound on the high side, but might be correct for the typical weight of a fairly large, but not necessarily overweight person. I am a short woman with a few extra pounds, but not obese, and my dose according to the formula should have been about 125mg/day. I was only on that for a short time and most of the time my doc had me at 100mg., until he started tapering it to 75 or lower (I forget) after I'd been on it several months. I did well on the 100mg; my lungs cleared up very nicely. I wonder if I would have needed to be on it for less time if I'd had the 125mg. all along.

I second what Dale says, especially if he stays at that dose, but even if he doesn't; drink LOTS of water.

[annekat]

That dose sound too high. I started at 150 per day and then down to 50 where I am now. I'm on month 21 though. I hope 3 months does the trick for him. It can't hurt to question the dosage with his doc. Like others have said, water is very important! Katrina, I didn't realize you were on such a low dose of CTX.... I think I was on 50mg/day for a short time before switching to MTX. But I wonder how much good that amount is really doing you. Not as an expert, of course, but I seem to remember reading on here once that that might be considered a sub-therapeutic dose. Of course if you are pretty small, that could make a difference.
But it does make being on CTX as long as you have been seem a little less extreme, I guess, knowing that it's a low dose.

[HopeinTN]

I thought 150 was high for so long. It wasn't until recently that we went down and now at 50. I'm very eager to get off of it for good.

[annekat]

I thought 150 was high for so long. It wasn't until recently that we went down and now at 50. I'm very eager to get off of it for good. Well, now that you are on 50mg. and doing OK, maybe that bodes well for you getting off it altogether! I hope so! It seems like they should be able to switch you to one of the less toxic maintenance drugs.

[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!!

[drz]

My max dosage for CTX oral and azathioprine were both about 1 mg per pound of weight. When the higher dosages created problems they cut back till the CTX went down to 1/2 mg per pound and the azathioprine was only cut about 12 percent.

[Jen in Phoenix]

That does sound like a high dose of Cytoxan. I was originally started on Imuran but switched to Cytoxan after Imuran had no effect. When I was diagnosed I weighed 240 lbs and took 300 mg Cytoxan for 15 months. At my highest on oral prednisone, I was at 160 mg. I remember taking 120 mg forever (8 months or more), then slowly tapering down. I was also hospitalized for a week and given Solumedrol (intravenous prednisone). I was supposed to get 1 g (1000 mg) a day for 3 days, and then switched to IVIG for 4 days. But the hospital goofed and gave me three extra 1 g infusions of solumedrol. Man that stuff does a number on me. I quite literally gained approx. 5 lbs per day according to the bed scale, while getting the infusions. Then I had Cushings for about 2+ yrs after that along with the lovely "buffalo hump". Moral of the story - it always pays to check!!

[annekat]

Oh, man, Jen! That sounds like a huge amount of prednisone and did they ever goof on the Solumedrol! It's hard to imagine why they would not start you on CTX in the first place if they though you needed that much steroids! Better would have been CTX instead of Imuran from the start and fewer steroids, I think. I hope you got rid of the buffalo hump and are doing better now!

[Barry]

I was on 300mg a day for six months. I did weigh about 250lb at the time. The thinking was to get some control of the disease quickly before more permanent damage was done. It did work as far as stopping more damage from wg. I believe because of the quick hard hitting up front that my kidneys are now back to normal, lungs cleared up, and I got most(not all) of my hearing back. Note that was also before rituximab was fully approved in the US.

[mzschaumkell]

Thanks everyone for your responses, doctor STILL hasn't got back to me, I am tempted to drop it down to 200mg per day and get him to take it in the morning, but I will give her until tomorrow....from what I have read on these responses he is definitely on the highest dose by far, he was 104kgs on diagnosis (now 101kgs, about the same as you Barry).

How were your kidneys at diagnosis Barry and how about now? I thought the cyclo could effect kidneys in a negative way (maybe only from long term use!)

I checked about Rituximab and it is not funded in NZ for treatments of Wegs, so in other words it costs a lot of money and private insurance usually wont cover it.

[mzschaumkell]

Heard from doc today, she said it s only meant to be 200mg in the morn! not 200mg in morn and 200mg at night. Good to have that clarified. Blood tests were done this week and the white blood cell count is still normal and creatinine level has gone from 191 two weeks ago to 161 this time. So it is good news.

He has had no side effect from the 400mg of cyclo, so going to be strange to see what happens now, maybe he will get the insomnia from the pred haha due to go down to 40mgs on 1 August, so good timing!!

[annekat]

Oh my goodness! It seems like he'd be running out of pills too soon! Well, it's not a good thing to take that much CTX into one's body unprescribed, but sounds like he did OK and maybe got a head start at recovery! Best of luck to him.

[drz]

Thanks everyone for your responses, doctor STILL hasn't got back to me, I am tempted to drop it down to 200mg per day and get him to take it in the morning, but I will give her until tomorrow....from what I have read on these responses he is definitely on the highest dose by far, he was 104kgs on diagnosis (now 101kgs, about the same as you Barry).

How were your kidneys at diagnosis Barry and how about now? I thought the cyclo could effect kidneys in a negative way (maybe only from long term use!)

I checked about Rituximab and it is not funded in NZ for treatments of Wegs, so in other words it costs a lot of money and private insurance usually wont cover it.

My wegs expert at Mayo said it is approved for GPA in most parts of the world and said he would be surprised if not available in NZ. You might have to appeal to get. He said Australia has approved it along with Japan, China, and most other countries with reasonable health care.

[mzschaumkell]

Thanks Drz, I will ask when we have the appointment, I think it will only be if the cyclo cant be tolerated, but worth a shot, or even if he ever has to go on cyclo again (touch wood) that we could ask for it...