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pianist

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 #1 
Ok, so I've been on oral Cytoxan for one year at the end of June. I saw my rheumy last week and he's started weaning me off of it. It has helped my cognitive stuff and since the treatment protocol is 12 or 18 months, he's taking me off of it because he says the risks now outweight the benefits.
My big concern is that even with this rough chemo med, I'm still having symptoms of lupus. Even it has not kicked the lupus' butt! By symptoms I mean mouth sores, rashes, possibly some of my fatigue, fevers, etc. So, if it's not there putting out these lupus fires, what will? I haven't had any improvement with CellCept or azathioprine (Imuran). He says he will use prednisone. Is there anything else? For those of you that have gone through Cytoxan, what was your lupus activity like at the end of your treatment and did your lupus get worse when it ended?
Cakelady

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 #2 
I don't mean this to sound or mean or anything like that but with cytoxin I had to be in the hospital in a room by myself I was given fluids and another medicine to protect my kidneys if your rheumatologist is not protecting your kidneys something is wrong Cytoxin Will ruin your kidneys faster than anything


And no after cytoxin there is not a whole lot they can do for you they can treat the symptoms and I guess that with you this that's all you can ask for there will not be a cure unless someone takes lupus seriously the pharmaceutical companies are in it for the money they are not in it to make you better and to help you

Lupus has hit just about every organ in my body there's nothing they can do other than to make me comfortable and to manage the symptoms

You have to decide what you're willing to do Anthony was banned from this forum partly because of his UVA1 thread. (And I am not going to explain it right) Do I wish I had known about it a lot sooner yes there will always be people who say it doesn't work but there is a lot of people that it has helped.

I hope your doctor knows what he's doing my rheumatologist is now concerns with my quality of life if that makes sense

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Robinj

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Well that just stinks Painist. What are they recommending for a prednisone dose?
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pianist

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Hi, Cakelady. My rheumy says that what's important is what the cytoxan does to your immune system, not how you receive it. So what we look at is my white blood cell count. I am sorry you went through so much when you received it. It hasn't been easy for me either but I won't go into all of that. I do believe my rheumy is knowledgeable. And my neurologist agrees with him on this. I don't have any other explanation. I don't mean to take anything from you or your experience. He tests my kidneys as well as my wbc every four weeks and no damage has been shown.

Robinj - my rheumy won't increase any med until he sees the need for it, so what he has told me is that he will need to increase it to match the need and that can't be predicted. I asked for a prognosis and he told me didn't have a crystal ball! He's been very conservative with it in the past. Now I take 5 mg every other day. This is the lowest I've been able to go. Fortunately, I tolerate prednisone well. I was on 40 mg/day for 7 weeks and was still able to sleep and gained just a few pounds. I had some quick anger but I was able to get by. Yes, I know 40 mg for 7 weeks doesn't sound conservative, but he was trying to make a dent in the brain involvement. It did work, but he would not leave me on that dose. That's when CellCept and Imuran were tried. They did not work, Imuran messed with my liver also, thus the cytoxan.


Cakelady

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No problem pianist my rhemy was fairly new and there wasnt any rheumatologist in my area for along time. I was seen at Stanford for years. When I crashed I crashed hard and cytoxin saved my life. I spent most of December 2007-December 2008 in the hospital without cytoxin I might not be here now.

What I am concerned with is what happened to me. They give us these drugs and yes they make us feel better and they run their lab test and watch. What they forget or some don't understand is years later is when the damage can be seen.

I was on cytoxin and then mexotrexate for years. Had my blood work every 4 weeks then I got a cough that just didn't seem to go away. Pulmonologist rheumatologist cardiologist and neurologist all communicated with each other No one could come up with a reason. So I went for a CT scan. Robin will remember this. Unfortunately my rheumatologist did not read the report until two months later I had to go in for another CT scan stat and what was found out was mexotrexate gave me pulmonary fibrosis and lung lesions and a mass The CT scan also lit up my liver. My liver had to many cysts to count. The gastro doctor said it was from the meds. He said yes your blood work can look fine but without a ultra sound or a CT or an MRI you really can't be sure.

So please just beware. Doctors are not perfect and there is always the accption to the rule.


One last thing my Pulmonologist loves to put my prednisone up to 50 mgs a day then eat candy in front of me and tell me not to gain any weight. But I am currently on 10 mgs of pred but tomorrow I am going back up to 20 mgs my pleurisy seemed to be going away but it looks like it's back again.

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Robinj

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 #6 
Hang in there All :)
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pianist

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 #7 
Thanks to both of you for your replies. Cakelady, I especially appreciate your warning about not relying on the blood work. I will ask my rheumy about that. My mom got a lesion in the bottom of one of her lungs from methotrexate. It made her very sick and she has scarring on that lung still. I hope your pleurisy is gone soon. I've followed all the problems and pain it's caused. I'm sorry you have to go through that. 

Right now I'm fighting nasal congestion that's causing me to have, among other things, a very foggy brain. My neurologist says the brain inflammation will cause me to have the fogginess if my nasal passages are congested. Everything's connected. 
Cakelady

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Well good luck. Keep an eye on everything and ask for a CT with contrast. That will show a lot.

Keep us posted. One of the reasons I post everything is so that someone doesn't have to go through what I did. Learn from what happened to me.

Good luck.

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Cakelady

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Has your neurologist done a brain MRI? The MRI with contrast will show if you have brain lesions which will explain some of your memory issues
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pianist

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 #10 
I've had at least 5 or 6 MRIs with contrast. It also shows up in my spinal fluid. I've had a couple of brain CTs also. With the cytoxan my MRIs have stabilized. I go to Washington University.
Raglet

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 #11 
Pianist - are you on iv cytoxan or are you talking it in pill form. I believe in the pill form mesna is not given for kidney protection as the doses are much lower. I did three series of iv cytoxan and was always given mesna to protect my kidneys, plus iv fluids. It's the standard protocol for iv cytoxan, but not for oral cytoxin.
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Cakelady

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Thanks Raglet I had the IV cytoxin and each time got 2 doses of mesna and fluids. It would go a bag of fluids then mesna then cytoxin then depending on my nurse I got more fluids then mesna or mesna then fluids. I did not know they had a pill form
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pianist

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 #13 
Raglet - I take it in pill form. I'm hoping I won't need it again, but I'm glad to know having it again is a possibility. How have you done when you've come off of it? Did you lupus flare?
Raglet

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I've only ever had it iv, so I have no clues about the pill versions. My father was on the pills for autoimmune anemia but he's been dead for 10 years and I can't remember the details. The only reason they kept giving it to me was because they were desperate, and I have exceeded my lifetime dose so I can never have it again.
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Mairy246

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 #15 
Hi Pianist,
I realize I'm a little late to this thread, but I was on the pill form of Cytoxan after the birth of my daughter, along with high doses of prednisone. I had to drink 2 liters of water within a few hours of taking the medicine to protect my bladder- the amount of water I had to drink was the main reason I decided to pursue another treatment. My lupus was still mildly active while taking pill form Cytoxan as well. I was still getting bullous lesions and joint pain. I went to Johns Hopkins to get a second opinion on treatment and they recommended 2 rituxan infusions and cellcept as a maintenance. Happy to report that did the trick for me and I have been in remission for 3 years. My major lupus problems are diffuse alveolar hemorrhage (which has a high mortality rate associated with it- hit the genetic lottery there!) , joint pain and skin issues.

If I were you, I would perhaps consider getting a 2nd or 3rd opinion if at all possible. I fortunately live on the east coast and have easy access to some renowned rheumatologists who only see lupus patients. I hope that you do as well.
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