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Stephanie78
06-10-2011, 11:37 PM
So...how many of you have had this form of treatment? Was it orally or by IV? How many treatments did you have?

John is having the IV form. He is scheduled to have it once a month for 6 months. (Or possibly 3 depending on the blood work @ 3 months.)

He has to go back to UNC Chapel Hill for the treatments which includes flushing his bladder with a sugar saline mixture (Via IV) one bag of CTX then another bag of the sugar saline mixture to flush his bladder again (The sugar Saline causes him to go a lot more!). They said they have to carefully flush his bladder because the CTX is so toxic and causes harm to the bladder.

Anyone experience this type of treatment?
Not that I doubt the doctors in what they are doing, I just wanted to see how others dealt with it (If there were any side effects rather temporary or perm)

Sangye
06-11-2011, 12:13 AM
Probably the majority of people on here have taken ctx. I was on it twice-- oral both times. I did not do well on it at all. My first doc (not JHU) kept me on it for 7-8 months when it was destroying my bone marrow the whole time. I got weaker and weaker and the Wegs was barely controlled. I didn't go into remission. In 2009 Dr Seo put me on it for a flare but I only lasted about 3 weeks before my marrow started failing again. He said I can't take it again.

I'm always amazed at people who go on ctx and say they feel better and better. I can't even imagine that! But most people do seem to tolerate it just fine.

Why are they using IV ctx instead of oral? Oral is more effective and easier to control.

Stephanie78
06-11-2011, 12:29 AM
I had actually spoke with Phil concerning this while John was in the hospital (via facebook) he asked me the same question. I asked the Rheumy and he said that the oral form is more toxic and poses more threats or damages. Of course me not being a doctor I just nod and say "Oh Ok". He had his first treatment on Friday (of last week) he did well other then burning in his bladder area during treatment.

He said that he likes to monitor his patients while they are taking it for several hours because it causes such high risks (which is why John will go to Chapel Hill again and be observed before, during and after he takes it.)

John has so many changes that I'm unsure what it is...Ok I know what it is, he has been sick (really sick) he he has so many new meds in his body that it is causing all the changes. The mood is the worse. Sigh....We will get thru it! :)

NicShaf
06-11-2011, 12:33 AM
Stephanie,
Ctx is the common treatment for Wegs, Rtx is becoming more popular though. I am currently on Ctx. I was dx is Dec 2010, so this is my first go around with Ctx. I tolerate it pretty well. I don't notice too many side effects from it, a little more tired than usual, but I just rest more and I seem to do OK. Most of my annoying side effects are from Preds.
I am taking oral Ctx because, like Sangye said, it is shown to be more effective in treating Wegs. I drink TONS of water to flush my bladder. I have one of those plastic cups with a straw...bascially a sippy cup...that never leaves my side. It's 24oz, i drink at least 5-6 cups a day.
I started my treatment on January 1st, 150mg daily, and will hopefully be switching to Methotrexate next month when I see my Rheumy. I think that is the norm too, 6 months of oral CTX then switching to a maintainence drug.

Sangye
06-11-2011, 12:36 AM
I'm concerned that he had burning in his bladder during treatment. That definitely should not be happening and it may be damaging his bladder. They should be giving him something called Mesna to protect the bladder. It's routinely given with ctx.

It's extremely stressful to be diagnosed with something like Wegs. I never could have imagined, actually. It may be a good idea for John to see a therapist to help him deal with the changes. I've seen one since I was diagnosed. It's made a huge difference in how I've managed. It's also helped me use Wegs as a vehicle to heal a lot of old wounds and transform in positive ways.

Jack
06-11-2011, 12:41 AM
Oral ctx was pretty well the standard treatment for Wegener's until quite recently. IV administration often used only to get things started more quickly. The main danger from it is bladder problems so anything that may indicate this should not be ignored.

Stephanie78
06-11-2011, 12:43 AM
He had so many meds given while in the hosptital. I do know he had a small bag of something (I thought it was the steriod) afterwards.
I kid you not, I have learned to take a notebook and pencil and write EVERYTHING down and ask any and all questions possible.

I requested that he see someone/talk to someone before leaving the hospital but it never happened. I know he has reasoning (Justified) for how he feels and acts. I on the other hand feel like I'm gonna have a mental breakdown and just feeling that way brings on new guilt of all sorts.
The biggest issue I am having with him is that his muscles are weak still. For a living he drives a semi truck. He is on medications that states "DO NOT OPERATE HEAVY EQUIPMENT WHILE ON THIS MEDICINE". He is determined to go back to work. His boss understands his illness and has been incredible thru it all. He has short term dissability that she has encouraged him to take for a little while. I keep trying to express to him the dangers of him returning to work (for him, his company and innocent motorist on the road). I honestly think he understands that but doesn't want to (if that makes sense). I feel like now he has a resentment towards me because I discourage him from working for atleast a couple of weeks (until he feels better and has more muscle use).

Stephanie78
06-11-2011, 12:46 AM
Oral ctx was pretty well the standard treatment for Wegener's until quite recently. IV administration often used only to get things started more quickly. The main danger from it is bladder problems so anything that may indicate this should not be ignored.


That is what they explained to me. Which is why they said they did a full bladder flush before and after treatment. He had burning during treatment which they stated was normal but nothing afterwards (he was kept in the hospital 4 days after the treatment).
I would say the only "body" function he is still having problems with is having a bowl movement. He is on colace twice a day and I am going to have to pick up more mirelax today for him to take. I'm just so scared if he continues to use these items his bowls will become dependant on them.

Sangye
06-11-2011, 12:49 AM
The Mesna would be given first. You are wise to note everything! John is very fortunate to have you looking out for him.

You both are going through enormous emotional changes. The entire dynamic of your relationship has changed. Can his doctors intervene with work recommendations? It sounds like he's very frustrated at his condition and is transferring his anger to you instead. If he won't see a therapist you can. It does help, even if only one of you goes. Wegs is a long haul, even when things go as planned.

Rose
06-11-2011, 12:53 AM
I was also told that the IV's were the best choice for the same reasons. I had basically the same regime. I was fine with the IV's just some nausea on the day following which was alleviated by medicine. That was almost 3 years ago and since completing the IV's I have remained in remission with Cellcept 750mgs twice daily and prednisone 5mgs daily. Good Luck!

Sangye
06-11-2011, 01:24 AM
From the JHU (http://www.hopkinsvasculitis.org/types-vasculitis/wegeners-granulomatosis/) Vasculitis website: " Monthly intravenous cyclophosphamide appears less toxic but also less effective."

Doing IV ctx might be less toxic in some ways but it's harder to control. With oral ctx you gradually increase the dosage and can back off or stop if the labs start to show trouble. In my case IV ctx would have made a very bad situation unimaginably bad.

But really in the end they both stink! :rolleyes1:

NicShaf
06-11-2011, 05:58 AM
Stephanie,
The begining is the hardest part, or at least it was for my husband and me. And on top of this crazy diagnosis, Preds makes people crazier. I had mood swings like you wouldn't believe when I was at a really high dose, and took a lot of anger and frustration out on my husband, it was really tough to deal with. But as I started to heal and drop my meds, and become more comfortable with Wegs (mostly from talking to people here) things improved. Hang in there.
Very smart to bring a note pad with you. My husband started doing the same thing. There is so much information to take in, and as the patient, it is hard to listen and deal with it all at once. That is wonderful that you are so supportive, it will pay off in the long run.
Best wishes to you and your husband!

drz
06-11-2011, 11:26 AM
Oral ctx was pretty well the standard treatment for Wegener's until quite recently. IV administration often used only to get things started more quickly. The main danger from it is bladder problems so anything that may indicate this should not be ignored.

This describes my experience. IV at start to try get WEGS under control quickly, after a couple RTX IVs but switch to oral CTX since it is easier to monitor and adjust. I had trouble too with it causing bladder infections, urinary blockage, low WBC, anemia, but it eventually after several months got WEGS under control enough to switch to azathioprine which I find much easier on the body so far. Imuran does and can raise liver enzymes though which can necessitate a switch or change to some thing else. I had to cut back on the cholesterol meds to keep liver enzymes down at safe level.

drz
06-11-2011, 11:29 AM
He had so many meds given while in the hosptital. I do know he had a small bag of something (I thought it was the steriod) afterwards.
I kid you not, I have learned to take a notebook and pencil and write EVERYTHING down and ask any and all questions possible.

I requested that he see someone/talk to someone before leaving the hospital but it never happened. I know he has reasoning (Justified) for how he feels and acts. I on the other hand feel like I'm gonna have a mental breakdown and just feeling that way brings on new guilt of all sorts.
The biggest issue I am having with him is that his muscles are weak still. For a living he drives a semi truck. He is on medications that states "DO NOT OPERATE HEAVY EQUIPMENT WHILE ON THIS MEDICINE". He is determined to go back to work. His boss understands his illness and has been incredible thru it all. He has short term dissability that she has encouraged him to take for a little while. I keep trying to express to him the dangers of him returning to work (for him, his company and innocent motorist on the road). I honestly think he understands that but doesn't want to (if that makes sense). I feel like now he has a resentment towards me because I discourage him from working for atleast a couple of weeks (until he feels better and has more muscle use).

Are you getting any counseling from a hospital social worker to help you with your feelings and stress? Most hospitals and clinics in our area offer this at no cost to family members of serious chronic illnesses.

MCC
06-12-2011, 08:53 PM
I had IV cyclophosamide, once every 2 weeks and then every 3 weeks. I only needed 6 doses of it.

The first time I had it I felt sick and couldn't get out of bed, but after that I was given an anti nausea medication which worked. It just became a routine...I'd go into hospital for 4 hours and then I'd be back at work in the afternoon.

What is the bladder flush? Do you mean when you have IV saline bags before and after the treatment? I had it but I don't remember it being called that. EDIT: Sorry I just re read your post and see that is what it was!

I hope your husband finds it all ok Stephanie. I was told my hair might fall out but it didn't and I never had any nasty side effects either. It really wasn't so bad going to hospital. I used to be dropped off by my boyfriend at 8am and then I'd sit in a comfy chair in their treatment room for 4 hours reading a magazine and having a tea or coffee...usually some fruit for snacks and drinking lots of water! I'd have a chat to the nurses about how I was doing, had my weight checked and fill out some forms. Someone would pick me up at 12 and then I'd go off to work, job done.

RudiK
06-13-2011, 12:20 AM
I was put on 100 mg Cyclophosphamide (50mg pills twice a day) from the beginning and I'm still on it, although the doc's told me this week that the WG is in remission.

Jack
06-13-2011, 12:53 AM
If your Wegener's is truly under control (I always think of remission as being much further down the road than this) then you should be pressing to get off the ctx as soon as possible and move to something less toxic. The risks of taking ctx will always stay with you and don't go away once you stop so limiting its use is very important.

ArlaMo
06-13-2011, 03:31 AM
I was on oral ctx (200mg) for almost a year - didn't put me into remission. I tolerated it for the most part - some nausea for the first month or so and I did lose most of my hair. I drank SO much water while taking the ctx! After a visit to Dr. Langford at CC (and a couple of months trying to get insurance approval) I had the rtx infusions and I finally seem to be headed in the right direction with my labs.

Jack
06-13-2011, 03:47 AM
It is good that there is now an alternative to ctx. If it had not worked for me 25 years ago I would have been in big trouble. Even so, I had to go back to it several times so can not use it again without high risk.

pberggren1
06-13-2011, 05:54 AM
I hope I never have to go back to ctx. I start rtx for the first time on Tuesday.

norcalian
06-13-2011, 06:57 AM
Good luck with the RTX, Phil. It's been almost five weeks since my first RTX infusion...Although I don't feel all of the sudden better, my lab numbers improved this week. So perhaps the therapeutic effect of RTX is starting to kick in. (I hear six-weeks is the number for when the effect usually takes full force - so maybe next week will be even better). For me the side-effects were pretty much non-existent except for feeling really tired the rest of the day after the infusion...but that might have just been the stress of driving up for the appointment and sitting there for 4 hours.

pberggren1
06-13-2011, 07:10 AM
Good luck with the RTX, Phil. It's been almost five weeks since my first RTX infusion...Although I don't feel all of the sudden better, my lab numbers improved this week. So perhaps the therapeutic effect of RTX is starting to kick in. (I hear six-weeks is the number for when the effect usually takes full force - so maybe next week will be even better). For me the side-effects were pretty much non-existent except for feeling really tired the rest of the day after the infusion...but that might have just been the stress of driving up for the appointment and sitting there for 4 hours.

Thanks norcalian. Hopefully it will work well for me as well.