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wgrebel
07-24-2010, 06:05 AM
I am now off Cytoxan. I was diagnosed October 23, 2009 with WG & had my first infusion of Cytoxan via IV on October 24, 2009. I began taking 200 mg a day by mouth November 23, 2009. I was on 200 mg a day from that point forward until July 13, 2010 when I had to go to the hospital because my white blood count was .6 due to the Cytoxan. My specialist admitted me to the hospital in Nashville, TN and informed me that the Cytoxan had put my immune system into a state of shock. I was in the hospital for eight days and released on July 21, 2010. About a month before I went in the hospital I had began to get really fatigued and sick and have basically not felt like doing much of anything. I have started Rituxan & have had my first Rituxan infusion. I had no reactions to the Rituxan & apart from being in fight with my insurance company over the drug (I will explain & ask for advice in another post) I am to get my secon infusion of Rituxan on July 30.

Sangye
07-24-2010, 09:44 AM
And that will be the beginning of your recovery, I'm sure. :)

pberggren1
07-24-2010, 11:23 AM
Well, it sounds like you are on the right track wgrebel.

DEE
07-24-2010, 01:43 PM
Glad to hear someone coming of cytoxan im working towards tappering down as i take tablet form next move could possibly be Imuran
Hope all goes well wgrebel DEEx

Lightwarrior
07-24-2010, 06:26 PM
I saw my Rheumy today I start Methotrexate tommorrow (Saturday, oope thats today already). I am to take 25mg once a week and drop my cytoxan from 200mg a day to 100 a day for a month, with the exception of Saturdays when I will only take the methotrexate. At the end of the month I will stop cytoxan altogether and continue with Methotrexate. He started me on folic acid and wants to leave my pred at 15 until we get through this first month of the switch.

pberggren1
07-24-2010, 06:59 PM
I thought that Methotrexate was usually taken every day instead of once a week?

Hammy8241
07-24-2010, 07:27 PM
I thought that Methotrexate was usually taken every day instead of once a week?

I'm weekly

elephant
07-24-2010, 09:51 PM
It's usually once a week.

JanW
07-24-2010, 10:48 PM
It's once a week, which is why both patients and docs like it. I'm on 15 mg/weekly.

Sangye
07-24-2010, 11:32 PM
That's great news, LightWarrior. Do you feel comfortable with that?

Lightwarrior
07-25-2010, 02:34 AM
The dosing seems higher than what others in our group report taking, however I was also on a higher dose of cytoxan than usual and I am a large girl. looking at some of the literature it is not that far off. I am estactic about moving forward and getting off the harsh side effects of cytoxan, disappointed that I can't reduce prednisone more but a month more at 15mg won't be so bad when I spent over 6 months above 40mg. Lets say that I'm cautiously optimistic. Does this sound like a reasonable plan to you??I think I am close to not being able to use Cytoxan as my wbc have been below 3.5 for over a month.

Sangye
07-25-2010, 05:50 AM
I was only on mtx for about 2 months but did 25 mg injections once a week. I don't know how that compares to the oral.

I think your doc is being ultra-cautious about your treatment, which may or may not be necessary. I sure can't tell! Did you decide to consult a VF doc? I remember you posted something but I've forgotten what you decided. :D

Lightwarrior
07-25-2010, 06:27 AM
Sangye,
I did decide to consult a VF doc, since my rheumy won't do it, I just need to gather everything and find another doc to ask for the consult. I think he is being cautious because I have ahd one flare while being treated and have not really had a day that was anywhere close to pre-wegener's since i was dx.

JanW
07-25-2010, 06:34 AM
For what it's worth, I specifically asked whether mtx dosing was correlated to weight because I'm on the small side, and he said it was not. The highest dose he had a patient on was 32 mgs, I think.

pberggren1
07-25-2010, 07:07 AM
It has been a few years since I was on Methotrexate but I could swear I was taking it every day.

Sangye
07-25-2010, 07:41 AM
LightWarrior, that makes sense. I'm glad you're going to get a VF doc.

DEE
07-26-2010, 12:09 AM
[QUOTE=Sangye;20378]I was only on mtx for about 2 months but did 25 mg injections once a week. I don't know how that compares to the oral.

Lightwarrior i took 25mg mtx for six months tablet form all on the same day and same time it used to make me feeling extra tired for a couple of days afterwards but other than that no other side affects good luck with your treatment DEE x

JanW
07-26-2010, 07:20 AM
And, for what it's worth, Lightwarrior, I don't take have any side effects at all except very slight tiredness that evening, and I have been taking it since April. So you never know!

Lightwarrior
07-26-2010, 09:14 AM
Thanks Dee and Jan, it will be nice to take something that doesn't have side effects. I took my first dose yesterday and so far so good, no more tired than normal, no nauseau at all. Cool

elephant
07-26-2010, 10:18 AM
Lightwarrior you might be lucky and have very few side effects, keep all toes crossed. :)

wgrebel
07-27-2010, 09:32 AM
My wife has psoriatic arthritis & she is on methotrexate. She takes her dose once a week orally. She was doing injections but like taking the pills better and switched back. She takes folic acid to control the issues that go along with methotrexate.

It is my understanding that you switch to methotrexate when you step off prednisone for your WG care. Is this correct? I am finally hearing that my prednisone is going to be stepped down after my Rituxan infusions are complete.

WGREBEL

JanW
07-27-2010, 10:00 AM
Depending on how long you've been on pred and how high the dose, you may need to remain on it for some time (and for some this is lifelong). Mtx is generally used to replace the more toxic immunosuppressant, ctx. Imuran and Cellcept would be considered other immunosuppressants on the same level as mtx.

onatreetop
07-30-2010, 02:40 PM
I just got the news today that I can stop taking cytoxan. My doc finally said its been a year and he recently read a paper a fellow wrote that he he has been consulting with because of the number of WG patients that he is treating now. some werent responding to treatment like the rest of us so he looked for someone he knew and found him. So ...............no more cytoxan and starting the mtx 8 2.5mg tablets every monday? I was wondering if I should start on friday so that if I did have the tired sideffects I could handle it on my slower days? I havent read up on the drug yet but what I have gathered so far it sounds better. My pred got to go down to 40mgs! yeah! It's a begining anyway.
I was wondering if stopping the cytoxan of 100mgs and starting the mtx days later is going to effect me some how?? And the next question is will I be able to stop taking the meds that line my bladder and protect the kidneys? Or are they still nessesary? The pharm guy said the thing they worry most about using mtx is stomach issues. Lots of questions now that I am out of the docs office. How much better am I going to feel with the sudden change? Cytoxan doesnt need to be weened off of does it? ok now my head is spinning. I was Surprised he decided to do it now. My hands arent good right now and my arms are being effected more. Go for 3 mrvs ovwer the next week and another mri. He did stick me with corti shots in the palm of my hand and a tendon near my elbow. they have been numb all day which was wonderful but I no that that injection sites are going to hurt for days now. poop!! Any feed back would be great.Sorry I have been abcent from class so long.

DEE
07-30-2010, 03:20 PM
hi onatreetop good news about coming off cxt thats what im working towards . i took mtx before cxt and use to take at thw weekend as it made me more tired for a couple of days .
yes i would say take anything that tends to help to project your stonach as it made me feel alittle sickly at first but other than that i had no problems taking it . was aiso told about having regular bone scans when taking mxt which i did and had no problem with either
good luck wishing you well DEEx

elephant
07-30-2010, 08:34 PM
I missed you Onatreetop. Glad you getting off cytoxan, sorry about your arm/hand pain. What happened? Keep posting.

onatreetop
07-30-2010, 08:53 PM
I have been crazy busy. My hands are swelling again with tendon pain as well. Can make some simple things not so simple. i am most likely just working to much. I started taking someone with me on really busy days so that I am not doing all the work alone. Doc wants testing done to figure out what is wrong. He doesnt think its the WG now. Hes looking for something else and injury maybe.But this has been building up to this point. The pain I could do without. Its strange. When I hold my arm out straight then turn it from side to side like turning a door knob my forearm and bicep hurt really bad. The bicep just started recently. It was just the forearm and hand before. I keep thinking maybe side effect from meds? but why just one limb? i just take a day at a time and pray for the best for all of us.
Just had the dex scan and there is change in my spine but hips werent bad.

Sangye
07-30-2010, 11:05 PM
Great to hear from you, onatreetop! I'm glad you're getting off the ctx. (I can't believe you've been on it for a year, though. And also still at 40mg pred?)

I hope you do well on mtx and that they can figure out your arm pain. Sounds awful. :(

onatreetop
07-31-2010, 02:15 PM
Good to hear from you too. You have all had a bit of a rollercoaster ride also. The pred was at 60mgs 4 weeks ago. We were trying to get some of the swelling down. But it didnt seem to help and the labs were good too? So down the mgs go. I called and asked the doc if I could start the mtx on friday in case of side effects and he said nope. Start on monday that way if there is a reaction they are there and open to see. That made sense duh. Hopefully the mris will find whats happening. blockage? Who knows? It was a good feeling to remove those round blue pills from the am pill sorter !! That and the bactrim. Yippy!

pberggren1
07-31-2010, 02:25 PM
Nice to hear that you are going off ctx onatreetop. I forget, you clean houses for a living right?

onatreetop
07-31-2010, 02:40 PM
Yeap that crazy lady. Cant bet the hours. I pick them and the pay is so good I know I wouldnt be able to match it in retail or in any other business. But..................only as long as my body can take it. I have been sharing the wealth so to say.Bring help with me means less money but not as much pain later in the day.

pberggren1
07-31-2010, 02:53 PM
Like you say it is good to have money but less pain is good too and hopefully you still make enough to live on.

Sangye
07-31-2010, 11:22 PM
Onatreetop, I remember the joy of pulling the remaining blue pills from my pill sorter! Make sure you wash it with soap and water so you don't continue to expose yourself to traces of chemo.

Lightwarrior
08-01-2010, 04:58 AM
Onatreetop, I remember the joy of pulling the remaining blue pills from my pill sorter! Make sure you wash it with soap and water so you don't continue to expose yourself to traces of chemo.

I can't wait...three weeks and counting. Cytoxan stops, I just took my second dose of Methotrexate, so far so good.

elephant
08-01-2010, 05:25 AM
LIghtwarrior lets keep that way, hoping the methotrexate works great for you.

Sangye
08-01-2010, 05:29 AM
I hope it keeps getting better, too. Off cytoxan, then off mtx... You go, Lightwarrior! :)

DEE
08-01-2010, 05:38 AM
hope to follow in you footsteps Lightwarrior although it wont be mxt already tried that on me will know 28th aug when wg consult comes back off his holidays thinking of using imuran !

wishing you all best wishes that it works out for you and that we all start to move a few steps forward :) DEE X

onatreetop
08-01-2010, 12:55 PM
I cant stop wondering if monday is going to be ok. taking the mtx for the first time. I am tempted to take it in the afternoon or even evening. The instructions say on monday not when? am or pm? I have to get a new pill sorter anyway sunday pm flap came off a couple weeks ago. So .......... what do I do with the leftover cyt. ? save it??? Just in case for a while I guess? The bractrim too?

JanW
08-01-2010, 02:56 PM
Dr. Monarch says that frequently mtx side effects can be mitigated by increasing folic acid dose beyond standard 1 mg/daily dose. In Boston they will routine do 2 or more mg/day. Also docs who tell you to not dose FA on your mtx day are operating on bad info. FA should help for both nausea and fatigue. I've been on 15 mg/wk for a few months now and have experienced none of the side effects that have been mentioned here.

Sangye
08-01-2010, 11:21 PM
I didn't know that about mtx, Jan. That's a good one to keep repeating when people discuss mtx.

Onatreetop, I save all my meds that I stop, even though I really wanted to throw out that ctx! Bactrim is a great one to keep on hand. If you develop a bladder infection, you might be able to save yourself a trip to the doc. This happened to me recently. It came on fast and with the vertigo I was not in good shape to get to my PCP. I called her and she said to go ahead and take Bactrim I had for 5 days.

Another interesting use for ctx: I have a friend whose dog developed cancer and her vet was treating it with ctx. The cost was outrageous for her. I offered her my leftover supply since I can never take it again. Sadly, her dog died before she could use it.

JanW
08-01-2010, 11:45 PM
I agree Sangye. I still remember when I first came here another member telling me that I must have gotten it mixed up and that FA is just necessary because of how them mtx affects it presence in the body . But doc have known for a while that FA relieves side effects - but they've been scared to amp that up thinking it will affect the mtx's absorption. Bottom line is given it's good safety profile and relatively lower toxicity, the docs in Boston try to get patients to tolerate it. Vs cellcept, say, which they call "the Cadillac that drives like a Ford!" about 10 percent of patients on it have "intractible diarrhea" and it isn't more effective than imuran.

Sangye
08-02-2010, 12:17 AM
The diarrhea was certainly an issue for me. I love the car comparison. So true. :D

Psychologically I did feel better about being on it than I would being on a chemo drug. CC is targeted and doesn't damage DNA, etc...

Jack
08-02-2010, 12:50 AM
Diarrhea is a problem for me too, but I'm not sure how much of it is due to Cellcept. Some years ago I switched from the standard form to the enteric coated, slow release form - Myfortic, but I did not detect any change in the condition of my gut. I've had all the tests and nothing very conclusive was found so I've decided that it must just be the general cocktail of stuff that I've taken every day for the past 25 years.

Sangye
08-02-2010, 01:10 AM
When I was on CC I thought at least some of the diarrhea was due to the other drugs or damage, etc... Nope. As soon as I stopped it, the diarrhea stopped too.

Drinking aloe vera juice daily did help it, though. I'd be in trouble if I went back on CC because I'm now allergic to aloe. :(

Jack
08-02-2010, 01:16 AM
Well it has kept me in remission for many years now so I dare not risk changing away from it. I think this was something my old doctor had in mind for me before he retired, but I was against it so we decided not to change at that time.

Sangye
08-02-2010, 01:31 AM
Oh yeah, I wouldn't think of you changing it either. Trading diarrhea for Wegs is a very bad deal.

JanW
08-02-2010, 03:52 AM
A lot of the language around remission here appears to be quite a bit different than what I am hearing her in CA. They don't who will flare, why they flare or if they will flare at all. Consequently, clinically the idea that remission is maintained by drugs is being challenged. It appears to the investigative teams ghat remission is quite random, quite common and (news to me) may not need to be treated agressively. These guys are really humble in the face if the toxicity of the drugs vs benefit of avoiding what would be in a subset of us a rather moderate flare. A neph said, "if I told you that I was going to put you on a chemotherapeutic to avoid a rash and a stuffy nose a year from now, you'd say I'll take my chances."

Long story short drug 'protection' again relapse is highly overrated in these guys' mind. There are a ton of variables at play here.

Jack
08-02-2010, 04:30 AM
In my own case, that choice is a little easier to decide because the treatment required to keep my transplant from rejecting is very similar to that for Wegener's. I know that I can't come off the meds and I take the minimum dose to keep everything in check. However, even this has taken a huge toll on my general health.

elephant
08-02-2010, 05:00 AM
Jack your on a very low dose of myfortic 750 mg, I like to get down to at least 1000mg of cellcept.

Jack
08-02-2010, 05:02 AM
The dose of Myfortic does not translate directly to Cellcept, but I believe that I'm on half the usual dose.

elephant
08-02-2010, 05:04 AM
So Cellcept is not equal to Myfortic. Thanks Jack!

Jack
08-02-2010, 05:08 AM
1440 mg Myfortic = 2000 mg Cellcept

elephant
08-02-2010, 05:09 AM
Thanks again Jack.

pberggren1
08-02-2010, 05:31 AM
Wegs is Math after all.

janNaz
09-08-2010, 03:52 PM
Dr. Monarch says that frequently mtx side effects can be mitigated by increasing folic acid dose beyond standard 1 mg/daily dose. In Boston they will routine do 2 or more mg/day. Also docs who tell you to not dose FA on your mtx day are operating on bad info. FA should help for both nausea and fatigue. I've been on 15 mg/wk for a few months now and have experienced none of the side effects that have been mentioned here.

Hi JanW. I've been lurking this forum for quite some time now because everyone is so knowledgeable and I'm still learning. I've also got two little ones that keep me on my toes all the time - how I wish I had their energy! - and by the time I sit down in front of my computer I'm exhausted. Anyway, today is my last day on cytoxan (150 mg), after being on it for 6 mos. Needless to say, I'm very happy about this! Tomorrow I will be starting on 15 mg/wk mtx with 1 mg/day FA except on the day I take the mtx dosage --- based on your reply, is this not a good idea? I wonder also if I should take 2 mg/day of FA instead of 1 mg? Hmmmm.....wish I read this before meeting with my rheumy this morning. Also, I'm currently on 20 mg pred, which rheumy does not want to taper until about another month or two, depending on my body's reaction to mtx. Another question - mtx vs cellcept - is one better than the other in terms of lesser side of effects?

elephant
09-08-2010, 10:26 PM
Two things that I know about MtX is that it is a Chemo drug and it is harder on your liver...so you have to be careful about over the counter medicines and alcohol. I am on cellcept and have no problems with it. I guess 10 % of people who take cellcept get diarrhea.

Sangye
09-09-2010, 12:41 AM
Some people have an allergy to mtx that causes pulmonary infiltrates or "pneumonitis." It looks like pneumonia and can be misdiagnosed as pneumonia. Within 2 months of starting mtx, I had the reaction and was treated for pneumonia for 2 months. Thinking it was pneumonia, the hospital doc stopped the mtx and I went for several months without any Wegs treatment. It wasn't until I got to JHU that Dr Seo told me it had been an mtx reaction and meant I couldn't take mtx again.

JanW
09-09-2010, 01:54 AM
That's exactly right. Mtx can be hard on the lungs and the liver in some people and you have to seriously limit alcohol and advil.

Near as I can remember about the conference, I think that the specialist was saying that there was no reason not to take folic acid on your mtx dose day, and he might even have said that he didn't know why rheumys gave that advice. I've always taken mine every day, and I don't think there's any reason to go above 1mg/daily unless you're having side effects that the FA can control.

janNaz
09-09-2010, 02:48 AM
Thank you, Elephant, Sangye and JanW, for the helpful information. My preference was cellcept, because it seems to me that the side effects are less severe than mtx. I am aware of the effect on the liver, which is another reason I wanted cellcept....so that I can have alcohol on some occassion! Rheumy also did discuss pulmonary infiltrates of the lungs. His reason for starting mtx instead of cellcept is because of long term effects, since it is most likely I will be on this "maintenance" drug for at least 2 years. He explained that my CBC & CMP will be monitored in a month and then the month after to see if my body is having any negative reactions to mtx, and if it is we can look at cellcept at that time. It is my understanding the CMP monitors liver and kidney functions. As for my lungs, I guess I'll have to watch out for any changes there.

On another note, Sangye, I finally contacted Dr. Force's office. I hope to see him soon and I'm hoping he can help with my imbalance issue.

Thanks again all!

Sangye
09-09-2010, 03:21 AM
I'm glad you got hold of Dr Force. I forgot which member I sent to him and was wondering if they ever made it!

JanW
09-09-2010, 04:32 AM
Although I probably see more people complain of tiredness and nausea with mtx vs. anything with cellcept, that hasn't been my experience or my doc's experience prescribing it mainly for RA patients.

janNaz
09-09-2010, 06:30 AM
I took my first dose of mtx this morning, and, of course, thought of more questions....and started to panic a little bit. Should I have taken it in the evening vs. morning? From what I recall, my rheumy said in the evening/night, but I didn't remember this until after I took it! I don't want to make the same mistake as I did with ctx (taking it in the evening when I should have taken it in the morning). Since my last dose of ctx was just yesterday morning, should I have waited a few days before taking mtx?

JanW
09-09-2010, 10:48 PM
I was never told a particular time of day, so I take mine in the morning after breakfast, on a Monday (I was told to pick whatever dosing day was most convenient for me). I have heard of people taking it at night because of nausea/fatigue, but I've never experienced these symptoms myself. I take it at the same time with FA.

janNaz
09-10-2010, 08:21 AM
I was never told a particular time of day, so I take mine in the morning after breakfast, on a Monday (I was told to pick whatever dosing day was most convenient for me). I have heard of people taking it at night because of nausea/fatigue, but I've never experienced these symptoms myself. I take it at the same time with FA.

Thanks, Jan. I checked with my pharmacist this morning, and she said the same thing you did. Guess taking something new just made me nervous.

jola57
09-10-2010, 10:06 AM
janNaz, same here, I take it in the morning on Sunday. I have been on it for a year now and can honestly say that I have no problems with it. It is a low dose 10mg because of my liver.

janNaz
09-10-2010, 02:50 PM
janNaz, same here, I take it in the morning on Sunday. I have been on it for a year now and can honestly say that I have no problems with it. It is a low dose 10mg because of my liver.

I think I'll stick to taking it in the morning too. Now, are you taking FA on Sunday as well?

jola57
09-10-2010, 05:05 PM
If FA is follic acid, than I take it every day with my vitamin b6/b12. I think this is maybe why I don't have any problems with sores or nausea.

Lightwarrior
09-13-2010, 02:47 PM
If FA is follic acid, than I take it every day with my vitamin b6/b12. I think this is maybe why I don't have any problems with sores or nausea.

I take it on Saturday morning and I take folic acid 1mg every day.