suzmb
New Member
Posts: 11
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Cytoxan
Jan 7, 2010 13:05:47 GMT -5
Post by suzmb on Jan 7, 2010 13:05:47 GMT -5
Hello all,
My drs are considering putting me on Cytoxan to address lung issues (pulmonary fibrosis). Has anyone used this medication? What was your experience, side effects, etc.?
I currently take Cellcept and Prednisone for lung fibrosis, in addition to Revatio and Letairis for pulmonary hypertension, AND a whole bunch of other meds for other symptoms, too. I also attend pulmonary rehab, and use supplemental oxygen.
A recent CT scan (Dec. 09) as compared to Oct. 08 has shown some progression with the fibrosis despite the fact that I am on all these meds.
I guess I am getting discouraged that I am taking all these meds, going to rehab, etc. etc., and feeling better (at least since last fall/winter) and still the scleroderma seems to be worsening.
Any insight would be appreciated. Thanks!
Suz
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Cytoxan
Jan 7, 2010 13:27:54 GMT -5
Post by steve201 on Jan 7, 2010 13:27:54 GMT -5
Hi suz I took Cytoxan for quite awhile...took it by pill...I can't remember the exact dosage but it was rough taking it...some folks have taken it via iv...the pills were slower acting but did work on my lungs ... side effects were extreme nausea....I had to learn to take it right before a meal..so the food would pack it down and not make me sick as a dog....the second thing it did was thin my hair out..didn't loose it all..but it got finer.....the thing you will probably need to take with it is iron and calcium supp....also something for nausea...I was on zofran....expensive as hell but I got it from merkmedco and it was quite a bit cheaper thru mail order pharmacy..... Cytoxan was rough taking but it did stop the progression of my fiborsis in my lungs...I originally lost 28% of my lungs due to the fibrosis...but I've been doing alot since then..not slowed down much...and I've recovered abot 8% of my lung capacity.....I strongly suggest that if your going to cytoxan......that you learn to take it with a meal....(helps keep it down) and to use some sort of anti nausea pill too...unless your going with IV ..then I have no idea from there.....it's a chemo drug and is used for cancer treatment and has also been good for SD...oh yeah....the other pills I've been on during that treatment was prednisone and tetracycline....that's what really helped alot...
Steve
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Cytoxan
Jan 7, 2010 21:56:30 GMT -5
Post by kathygirl on Jan 7, 2010 21:56:30 GMT -5
Cytoxan was a miracle drug for me. It was reversing my scleroderma. Unfortunately I am now having blood in my urine. The docs are still doing testing but think it may have affected my bladder. I would take it again if at all possible. I felt great while taking it. No sickness. Increased energy. It gave me a better quality of life.
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Cytoxan
Jan 7, 2010 23:22:07 GMT -5
Post by steve201 on Jan 7, 2010 23:22:07 GMT -5
kathy...did they tell you to drink alot of water??...when I was taking it..the doc's told me to drink as much water to keep it clear of my bladder and other parts so it wouldn't bleed...I did drink as much as I could and thus didn't have any problems....
steve
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Cytoxan
Jan 8, 2010 13:26:23 GMT -5
Post by kathygirl on Jan 8, 2010 13:26:23 GMT -5
I drank more water than they suggested just to be sure i had enough. I even made sure I went to the bathroom 2-3 times in the night. At this point still not sure if the blood is from my bladder or kidneys. When I find out what the problem is I will post it.
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Cytoxan
Jan 8, 2010 19:24:58 GMT -5
Post by grammie on Jan 8, 2010 19:24:58 GMT -5
Hi, I had six round of infusion of cytoxin and it completely took care of my lungs. In short order I was breathing better and moving better within two months. It was trully a miracle drug for me. Even the pul. dt was surprised at how well I responded.
Side effects? Not too bad. Did have the Hand/foot thing and did get tired by round six. I kept all my hair (had bought a wig for told it might go). It was pretty good to me! Funny, it was just a yr ago March that I finish round six and nothing really stands out for me.
grammie
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Cytoxan
Jan 8, 2010 19:26:10 GMT -5
Post by grammie on Jan 8, 2010 19:26:10 GMT -5
Oops, forgot, yes do drink! Don't want that chemo drug hanging around in the system too long!
grammie
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kate
New Member
Posts: 21
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Cytoxan
Jan 12, 2010 10:12:16 GMT -5
Post by kate on Jan 12, 2010 10:12:16 GMT -5
I've been getting Cytoxan by IV since the beginning of September 2009. I go every 4 weeks and get my infusion at the out patient dept. of the hospital. It takes about 6 hours with everything they give me before/during/after the Cytoxan. I did see some improvement in the tightness of my skin at the tops of my legs, but not many other places. I am taking it because of the fibrosis in my left lung. I go for my 6th and final treatment at the end of this month.
I do get nauseas but i take anti-nausea meds during the IV and have pills for after. I haven't ever vomited (sorry for the bluntness) but just really sick to my stomach. I have lost a bunch of my hair so it is a lot thinner than it used to be, but I am glad to still have most of it. The doc says in Feb. he will have my CT scan and PFT's done again and see if the Cytoxan has helped. The Cytoxan makes me really tired and feel crummy for about a week or so. Sometimes it's worse and sometimes it's better. Each treatment has been a little different. The third treatment I thought they were trying to kill me for sure, but that was the roughest one so far. It affects each person different.
If you are having no luck with anything else helping then I would suggest trying it. Hopefully next month I will know it has helped. I'll let you know what I find out then. Good luck to you.
Kate ;D
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Cytoxan
Jan 20, 2010 1:33:01 GMT -5
Post by haircrow on Jan 20, 2010 1:33:01 GMT -5
I have been on cytoxan for quite a few years, I've spotted a few times but thought it was female problems until i read this. I realize that I have not drank a lot of water lately. I taken cytoxan so long that I forgot some of the side affects. I take cytoxan by pill and my doc is trying to take me off of it slowly but my lungs don't seem as if they are any better. But i am still vertical. LOL
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Cytoxan
Jan 20, 2010 14:57:40 GMT -5
Post by carolyn12 on Jan 20, 2010 14:57:40 GMT -5
Question: Once you're done with cytoxon, do you have to repeat in later on? How long does it work?
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kate
New Member
Posts: 21
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Cytoxan
Jan 20, 2010 17:47:16 GMT -5
Post by kate on Jan 20, 2010 17:47:16 GMT -5
Carolyn12,
This is the first time for me to use cytoxan. My rheumy is going to re-do my PFT's and CT scan of my lungs after I finish to see if the Cytoxan helped. If it did help then we'll just monitor my lungs. He has told me that if it only kept them the same or made them a little better than we would talk about whether or not to do anymore Cytoxan.
I believe the answer to your question is like everything else for this disease. It just depends on how the disease does with each person and how the Cytoxan does with each person. Maybe someone else will post that has gone through this and you can get their prospective.
Kate
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Cytoxan
Jan 20, 2010 18:40:09 GMT -5
Post by steve201 on Jan 20, 2010 18:40:09 GMT -5
for me it was a once in a lifetime thing...so far I've not had to go back on it...thank god..
Steve
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Cytoxan
Feb 5, 2010 19:46:09 GMT -5
Post by grammie on Feb 5, 2010 19:46:09 GMT -5
As I said, I had six rounds...once a month. Really wasn't bad but I do know it was a lower infusion than many get.
grammie
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