View Full Version : question on cylosporine
spotsz
01-03-2006, 11:53 AM
:) I just have a brief question, am finished the second course of Amieve, am waiting for something to happen but don't appear much better. My derm suggested waiting a couple of weeks and going back on cylosporine, I was on it after a flair while on Amieve, but the combo of two suppressents was too much, so I went off. He wants me to go on 100mg dose, Im just wondering what would happen if I went on 50mg, thinking the side effects may be less. What is the lowest doseage that anyone has been on and its still effective?I know there are those of you that just love this med as it works so well,but its a toss up between this and methx. Im not looking forward to this.Im about 40-50% covered especially on hips,butt and legs.
chaimFL
01-03-2006, 12:03 PM
I'll start by telling you that I have never been on cyclosporine, but I do know what I have seen and read. It seems that most of the side effects are dose dependant, so by lowering your dose you will most likely see a decrease in side effects. The problem is that the results are also dose dependant.
My suggestion would be to start at the lowest dose and bump it up after a week. You can keep bumping it up to reach your max dose with no noticeable side effects. You can also do the opposite and start higher and slowly lower it to find the right dose.
nsf103
01-03-2006, 12:46 PM
Hi,
I was on cyclosporine for about 18 months. It cleared me up about 75%. I am now using Raptiva and am at 95% clear (i have pppp). To my understanding, cyclo dosing depends a lot on your weight. i weigh 150lbs and at one time, i was taking 300mg a day. Once I was under control, my doasge went down to as low as 75mg per day. It's all relative you know? My doasge was lowered after a course of amevive from which I benefitted about 60%. I've been on cyclo, enbrel, methotrexate, amevive, and now raptiva. all along, i have been lucky enough to have great labs and steady blood pressure. I am a frim believer that if you really trust your dermatologist, that you should follow his advice. the side effecyts of any drug are scary - from asprin to methotrexate. and remember, all drugs affect individuals differently. i think a lot of how you react depends depends on your body chemistry, individual health status, and chance. you do not know if a P drug is right for you until you try it. if a side effect happens to one in 1 million people who have tried the drug, it has to go on the label of that drug. everyone reacts differently.
best of luck,
nicole
jennab711
01-04-2006, 01:22 PM
All I read was your question............I ADORE cyclo. I am back on it after enbrel is not working....just until I get on raptiva. I am on the lowest dose I ever taken. 100mg 1x day. I was up to 125 2x/day. I just loved it...I was clear in a matter of days. Nothing else works for me. as far as side effect, my blood pressure was and always has been great. so that was never an issue. I would never take mtx. just doesnt sound good to me, much more side effects than cyclo.....try it, you will be amazed. VERY sad when I had to come off it though. I ELATED I am back on even a low dose. Ive been on it over a year now with a 2 month break. best of luck..Jen
oakrai42
01-04-2006, 03:57 PM
I've been on cyclo twice and it cleared me 100% the first time and about 95% the second time... both times for me I need 400mg a day.. the highest dose medically allowed. I had no issues tolerating this does for about 9 months, then headaches start in... 300mg a day will keep me fairly clear, but at 200 it's like I'm not even on it.
Cyclo at 100mg a day and Enbrel, 50mg 2x a week gets me 100% clear. Cyclo at a 100mg one day, 200mg the next, 100mg the next, 200 the next rotation + Enbrel put me out of commission for 5 days with extreme fatigue and jaundice.... brutal...
So, the dose, plus whatever else you take, plus your height, weight, genetic make up, medical history, current lifestyle, past lifestyle(s), current stress levels, anticipated future stress levels, diet, exercise habits, and the position of the moon on any given evening, will determine what the best route to take would be.
That being said, cyclo comes in as low as 25mg capsules (Neoral) and I'd suggest tapering up starting at 25mg a day until you see success... 25mg a day for a week... 50mg a day for a week... 75mg a day for a week... etc... If 100mg a day cleared you last time, then you'll probaby need the same unless you've made siginifant positive lifestyle changes since then.. if you've made destructive lifestyle changes since then, then you may need more...
As is the nature of treating P! Although, I'm a guitar player, and not a doctor, so I could be full of.... :)
(sorry, I just like to babble when I'm bored at work :))
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