ashu

Cytoxan infusion experience?

6 posts in this topic

Hello friends,

 

In spite of all the medications her digital ulcers, nonhealing big ulcers over the joints, partial loss of head control, walking on toes, contractures, unable to do day to day activities, unable to squat, painful injections.

 

It is unfortunate that 11 years cute little daughter of mine is suffering.

 

Has anybody recieved cytoxan infusion? if so what is the improvement ? How many cycles received? What are the side effects?

 

THERE IS NO ABLE TO DO IN HER DICTIONARY EVERYTHING IS UNABLE.

 

m/o ashu

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Hi Ashu,

 

I don't have any direct experience with cytoxan infusions, but you might want to look at Medications for Scleroderma and this page on Cytoxan itself.

 

Is your daughter's doctor suggesting this treatment?

 

Cytoxan is a very powerful drug, with many unpleasant side effects and some potentially dangerous ones. I'm not a doctor, but I understand that treatment with cytoxan (oral, injection, or infusion) is done for as short a period of time as possible and repeated for as few cycles as the doctor thinks will be effective. Should your daughter's doctor think it would be of benefit, the actual course of treatment would depend on your daughter's overall health and would probably also be adjusted for her age and weight.

 

Please give your little girl all our best wishes and love.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Dr. D,

 

I've just read back through all your old posts to see if there was anything you had asked that we had not answered or information you had given before I started as Support Specialist and might have missed reading.

 

It seems like we haven't missed anything, but I certainly did on the names. m/o Ashu - oh my, it just 'clicked' that m/o means 'mother of .'

My apologies!

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Dear m/o Ashu,

I am deeply sorry that your daughter has scleroderma. I am 51 and have had it for 10 years. I was put on cytoxan the year after I was diagnosed due to diffusion capacity of 25%. It did give me great improvement however it was a very difficult therapy. I lost a huge amount of weight (which was okay since I was on the heavy side) which was probably from the large volume of water you must drink when on cytoxan. I also became very anemic, had to have blood transfusions and then had to take Procrit shots to boost my red blood cells. As you know, every medication reacts differently in different people. Even with all the difficulties, I am glad that my doctor put me on cytoxan, because when you can't breathe nothing else matters. When I was done with my therapy, about 6 months on cytoxan tablets and 10 months on infusions, my diffusion capacity was up to 70%. But my doctor and a doctor at Johns Hopkins said that much improvment could not be medically explained. They had hopes for about a 20% improvement, and I far exceeded that. I can't advise you on what to do, especially since this is someone so young. Please talk it over with your daughter's doctor and make sure you have a clear understanding of everything associated with cytoxan therapy. I wish ya'll the best.

 

Kim in NC

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I'm so sorry this is affecting someone so young.

 

I'm 53 (with a 5 year old son). I've had 6 cytoxan infusions. No improvement, but not worsening either. (Hard to know if it would have gotten worse without it). I tolerated it fairly well. The infusion day itself was pleasant (a nice break from work); it took about 5-6 hours. I would finish about 6 and then get a predictable headache at 9 which went away after a night's sleep. The next day I felt great (mostly due to the steroid they give you in the infusion process). Only issue was my face turning hot and beet red. But I could walk up and down the stairs without pain. The second day I was tired; the third day I was exhausted. And then I was fine. No nausea, no hair loss.

 

Everyone reacts differently I here so I hope if you decide to do it, it goes well.

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Ashu,

 

It is my understanding that cytoxan is a treatment for those of us suffering from decreased lung capacity due to fibrosis in our lungs caused by scleroderma. In your daughters symptoms, I don't see you listing shortness of breath but maybe I missed it.

 

Cytoxan is a very strong drug and is best administered by IV. When taking the drug it is important to drink as much water as possible to flush out the drug from your system. I have taken cytoxan and it was primarily for my lung issues not for my skin or joint issues. Good luck. I hope everything goes well for your daughter.

 

Gidget.

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