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Imuran or cyclophosphamide


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#1 beanie

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Posted 14 September 2008 - 07:23 AM

Hi! I have posted before but it has been awhile. After 1 year of being on Prednisone, my chest CT and pulmonary fibrosis shows progression, no improvement. My rheumatologist wants to start aggressive treatment and is sending me to another rheumatologist for a second opinon to see if I may be a good candidate for trying one of these treatments. Anyone on Imuran? I have read plenty on cyclophosphamide and am scared to take it. Scared not to take it. I work 2 part-time jobs and have a 5 and 8 year old and run the home by myself, though I am married. I get very little support or help.

I also had a recent echocardiogram after my chest CT showed 2 pericardial cysts. The echo showed no impairment and no change from last years exam. Anyone have history of these cysts?

I feel like crying all the time. I am soooooo tired the way it is and can't imagine taking something that is going to make me feel worse.

Any response would be appreciated.

Thanks,
Michelle



#2 Gidget

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Posted 15 September 2008 - 07:00 AM

Michelle,
Cyclophosphamide is the drug known to address Lung issues. Basically, it is used as a "sledge hammer" to get the lung disease under control and then Imuran is used as a "maintenance" drug once the lung disease has been stabilized. Usually the cyclophosphamide is administered for a 6 month period before transitioning to one of the immunosuppresents ie. Imuran, Cellcept, etc.. The cyclophosphamide is best administered by IV as oral cyclophosphamide can cause problems with the bladder. I have had 6 months of IV cyclophosphamide and found it manageable. Good Luck. Gidget



#3 Amanda Thorpe

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Posted 15 September 2008 - 01:06 PM

Hello Michelle,

I can't give any advice as I have only been on Cellcept.

I did want to say that I find it amazing that you work 2 jobs , look after 2 kids and a husband, run the home and oh yes have scleroderma. In your spare time do you run around in cape and underwear saving the rest of the world? :lol:

I am sorry you have no practical support on the home front as that's exactly what you do need. This forum will do all it can to provide advice, as it already has, support and a safe welcoming place to vent.

Out of interest when my sister was married she raised 2 kids and a husband, ran the house, worked and studied to be a midwife. She would come home in the morning, from a night shift, to find the breakfast stuff in the sink with the previous evenings dishes, the children not ready for school including unironed uniforms and the husband ready for work and off he would go. Thankfully she was not ill then, she is now. I felt for that situation and I feel for yours. :angry:

I truely hope you get the meds sorted out, please let us know how you get on.

Take care.

Amanda
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#4 canon

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Posted 15 September 2008 - 04:52 PM

Michelle,

Hang in there and you will make it. Make sure you take care of you first then the others, well kids do need attention but take care of you too. Your life sounds very stressful. What do you do to counteract the stress? How can we help you find some solutions? What in your life besides you can be set aside for awhile?

The new medication might make you feel better. The old ones don't sound so great.

I have never heard of pericardial cysts so I am sorry I can not help you with that. I have nodules in my lungs, stomach and liver that everyone is just watching. It gives for an uneasy feeling. Like where do these things come from?

Keep us updated.

Judy
A happy heart is good medicine.

#5 beanie

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Posted 17 September 2008 - 01:40 AM

Thanks girls. The more I read, the more I want to lean towards IV instead of pill treatment. How long does the fusion take and it is once a month?

I will have to be patient and wait and see what the second rheumatologist thinks. The waiting is the part that is soooo hard and being the specialist that he is and only seeing new patients on Fridays, that puts my appointment at the end of November.

No, I am not a superhero Amanda. Funny, though. Wish I did have special powers. Yes, no help from home. Unfortunately, a lot of husbands out there like that and mine is even retired and doesn't work.

Thanks for the support and I will keep in contact with you all. May you all have a good day.

Michelle

#6 kellyA

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Posted 17 September 2008 - 03:19 AM

Michelle,

Before you receive the actual cytoxian you will have an IV with fluids, I usually got to the infusion center around 9 and was out by 2 or 3.

KellyA

#7 Gidget

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Posted 17 September 2008 - 03:46 AM

Michelle,

The IV is given once a month and you are hooked up to an IV drip. Most people have the IV scheduled for a Friday, so that it given them the weekend to recoup.

Following the drip, you will not feel like doing anything. The next day, you will feel a little better and have a little more energy.
And by the end of the 2nd day, you will feel more like yourself again. So, that is why most people have the IV on a Friday as it gives them the weekend to take it easy before having to go back to work, etc..

It is important to drink plenty of water for at least 1-2 weeks following the IV. By plenty of water, try to drink 8 oz every 1-2 hours each day as you want to flush the drug out of your system as soon as possible.

Good luck,
Gidget

#8 janey

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Posted 17 September 2008 - 04:46 AM

Michelle,
I'm so sorry that you are having to make this decision, because it's one that none of us want to have to make, but many of us have had to. Remember that we aren't doctors, so most of the information you receive is from experiences or Internet information. Please discuss everything with your doctor! It sounds like you have done quite a bit of reading already, but just in case, here is our page on oral vs. IV cyclophosphamide for pulmonary fibrosis.

Here's another study that I found in the Imuran section on Imuran vs. cyclophosphamide for SSc. This was a randomized unblinded study found that the forced vital capacity (FVC) and carbon monoxide diffusing capacity (DLCO) did not change after treatment in the oral cyclophosphamide-group, but statistically significantly worsened in the AZ (Imuran)-group.

When I was first diagnosed with pulmonary fibrosis, my rheumatologist tried Imuran, but I could only handle it for 3 weeks. He then put me on oral cyclophosphamide which, as Peggy puts it, was a sledgehammer to my system. I didn't do very well at all and came off it after a month. Once recovered, I was put on cellcept which I have been on for 1.5 years. My lungs are stable and have actually shown "a little" improvement based on the pfts. Since my fibrosis was slow moving, the cellcept was able to do its thing in time. I think that fast progressing fibrosis needs a faster acting drug - but again - please discuss your options with your doctor.

I hope you find comfort in the fact that you do have options and that in today's world, they have been proven to work. We couldn't say that 10 years ago. Please let us know how you are doing and what you end up doing. We're always here for you.

Big Hugs to you Darlin'


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