Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 , I've been on Cytoxan since August. I'm up to 150mg. a day. It has helped my Vascullitis but I am still having RP flares, though not as severe. My pulmonologist at the Cleveland Clinic said the standard protocol for Cytoxan use for RP is between 150mg to 200mg. a day. My hair is getting very thin and I have virtually no energy. My blood and urine is checked every 4 weeks and so far so good. The extreme fatigue is what bothers me most. Did you find you got a lot more infections while on Cytoxan? Sandy Lu/Sandy, I'm curious about the Cytoxan also. I started on Cytoxan in April 2001 and went up to 150 mg per day. Then in late July my white blood count got pretty low so the doctors at Mayo decided to lower the Cytoxan to 100 mg. I have a new Rheumatologist here at home (had to change insurance companies on 1-1-02) and he thinks we should increase it back to 150 or maybe 175 mg. - He says, "Let's throw the book at it." He has only treated one RP patient before, so I asked him to call the Mayo Rheumatologist and talk it over. I've only had one flare since beginning Cytoxan and it was related to irritation from a broncoscopy done in July. I have regular CBCs and urine tests to monitor the white blood count and kidneys because of the toxicity and well as I drink tons of water daily. I also take Fosamax and calcium supplements for my bones. My hair thinned out some but not much. Did make me tired, though. Can you let me know your experiences? Re: Sandy Hey Sandy, How are you doing on the cytoxan? They wanted to put me on that a couple of years ago, then the doctor changed his mind, actually I think he forgot what he was going to do. But he had read of a lot of success stories with cytoxan putting RP into remission. I'm praying this will happen for you. How is doing? Please let me know. Love you lots! Lu No she never try cytoxan. The drs. think she's too young and they have to keep this kind of medications for later. the latest wil be the best.LOL Amitiés DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Hi Lu, I'm doing okay on the Cytoxan. Makes me really tired though. I am still having flares but not as bad and my Vasculitis is so much better. is doing okay. No change in her MRI. She has her next one in April. Why don't you ask your Doc about the Cytoxan and see what he says. Love Ya, Sandy Hey Sandy, How are you doing on the cytoxan? They wanted to put me on that a couple of years ago, then the doctor changed his mind, actually I think he forgot what he was going to do. But he had read of a lot of success stories with cytoxan putting RP into remission. I'm praying this will happen for you. How is doing? Please let me know. Love you lots! Lu No she never try cytoxan. The drs. think she's too young and they have to keep this kind of medications for later. the latest wil be the best.LOL Amitiés DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Re: Sandy Hey Sandy, How are you doing on the cytoxan? They wanted to put me on that a couple of years ago, then the doctor changed his mind, actually I think he forgot what he was going to do. But he had read of a lot of success stories with cytoxan putting RP into remission. I'm praying this will happen for you. How is doing? Please let me know. Love you lots! Lu No she never try cytoxan. The drs. think she's too young and they have to keep this kind of medications for later. the latest wil be the best.LOL Amitiés DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Sandy, re: , I've been on Cytoxan since August. I'm up to 150mg. a day. It has helped my Vascullitis but I am still having RP flares, though not as severe. My pulmonologist at the Cleveland Clinic said the standard protocol for Cytoxan use for RP is between 150mg to 200mg. a day. My hair is getting very thin and I have virtually no energy. My blood and urine is checked every 4 weeks and so far so good. The extreme fatigue is what bothers me most. Did you find you got a lot more infections while on Cytoxan?********************************** When I was on 150 mg of Cytoxan I was whipped. I was glad that the doctors at Mayo reduced it. I think it was based on my lowered white blood count and the reduced amount of inflammation in my airways (per the bronchoscopy in July). There was no inflammation present during my November bronchoscopy so they kept it at 100 mg. But my new local Rheum. is questioning that. I was blessed with very thick hair (hair dresser says enough for 5 people- so he's kinda pleased with the hair thinning!) But I sure get tired of cleaning it up around the bathroom floor and sink. I'm not quite as tired at this level and I've been pretty lucky with infections (head cold in Sept and acute bronchitis last week-almost gone). Since I've been on the C-PAP at night, I awake feeling pretty good. That's when I get my exercise in and I sweat so much and get so hot, I think I kill off any little bacteria trying to grow in me. My husband put in a hot tub this past August. I get in everyday after exercising and I think it helps almost as much as anything...The heat helps with the aches and pains, the water relaxes and de-stresses me, and the moisture seems to help me breathe easier. From: Sandy Catalusci To: Rpolychondritis Sent: Wednesday, January 23, 2002 11:21 AM Subject: Re: Sandy , I've been on Cytoxan since August. I'm up to 150mg. a day. It has helped my Vascullitis but I am still having RP flares, though not as severe. My pulmonologist at the Cleveland Clinic said the standard protocol for Cytoxan use for RP is between 150mg to 200mg. a day. My hair is getting very thin and I have virtually no energy. My blood and urine is checked every 4 weeks and so far so good. The extreme fatigue is what bothers me most. Did you find you got a lot more infections while on Cytoxan? Sandy Lu/Sandy, I'm curious about the Cytoxan also. I started on Cytoxan in April 2001 and went up to 150 mg per day. Then in late July my white blood count got pretty low so the doctors at Mayo decided to lower the Cytoxan to 100 mg. I have a new Rheumatologist here at home (had to change insurance companies on 1-1-02) and he thinks we should increase it back to 150 or maybe 175 mg. - He says, "Let's throw the book at it." He has only treated one RP patient before, so I asked him to call the Mayo Rheumatologist and talk it over. I've only had one flare since beginning Cytoxan and it was related to irritation from a broncoscopy done in July. I have regular CBCs and urine tests to monitor the white blood count and kidneys because of the toxicity and well as I drink tons of water daily. I also take Fosamax and calcium supplements for my bones. My hair thinned out some but not much. Did make me tired, though. Can you let me know your experiences? Re: Sandy Hey Sandy, How are you doing on the cytoxan? They wanted to put me on that a couple of years ago, then the doctor changed his mind, actually I think he forgot what he was going to do. But he had read of a lot of success stories with cytoxan putting RP into remission. I'm praying this will happen for you. How is doing? Please let me know. Love you lots! Lu No she never try cytoxan. The drs. think she's too young and they have to keep this kind of medications for later. the latest wil be the best.LOL Amitiés DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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