Neoral (Ciclosporin) - Your personal experiences?

[clxirol34]

Hello everyone! Turning a long story shrot here. I've had severe atopic eczema since I was around the age of 3, I'm now nearing 20 and it's gotten more severe instead of better over the years. All treatments I've tried including ointments, creams and other forms of treatment have not worked or helped at all. My dermatologist wants me to start a course of Neoral to see if it helps.

I've read through the detailed info booklet they gave me and I've also read the info leaflet from the tablet package. Not too keen on the sound of the common side effects I may get though - although I know I may also be one of the people who won't suffer from any.

I just wondered if anyone here has been on these tablets or have known / know someone who takes these and if they helped / how they worked for you. Also, what (if any) noticeable side effects you had.

I'm asking as I suffer from Neutropenia (low white blood cells) and POTS (constant fast heart rate). This whole tablet is based on suppressing your immune system - which means, I'm even more prone to infection than I already am.

I hope I'm posting in the right area. Thank you in advance for any replies!

[wee_red_spots]

Hi,

I've only just signed up so hoping this reaches you correctly!

I used Neoral for my severe psoriasis. I have only just come off it after being on it for 9 months. I'm 30 and haven't started a family yet so my options were limited. My Derm didn't see it as a long term option (long term being more than a year in her eyes)because of the effects to kidneys and other organs with prolonged use. She used it to stabilise my psoriasis and my skin whilst on it was clear and it was pretty fast acing, I was clear within the first couple of weeks and going from 60% covered I was delighted with the results. I suffered no side effects and I was highly monitored with weekly check ups for urine and blood samples which became fortnightly after a couple of months then once a month towards the end of the 9 months.

Remember everyone is different and everyone's skin is different, that is only my experience and it was right for my condition, my age and stage in life and my current lifestyle.

Get in touch if you have any other questions.
Linzi

[skinsharesg]

Hi there,
I started having eczema 10 years ago when I was 29. Skin specialists prescribed me steroid creams first and then over the years when my rash started spreading to my whole body, I was prescribed oral steroids predinisolone. It went away when I had them and when I stopped (tapered), it came back. Skin specialists didn't treat my root cause at that time and kept suppressing my rash. One of them prescribed me ciclosprorin and I felt uncomfortable on the side effect : I had fast heartbeat occasionally and easily got flu and infections but of course at that time my rash were under control. However, I felt uncomfortable for taking such a strong medication for skin rash which I would consider not life threatening and it didn't go away even when I tapered it down. So I decided to taper down and stop it entirely. The problem with such immune suppression medication is that you cannot suddenly stop the medication.
So once I stopped, my rash flared up with a vengeance. I suffered a lot trying to manage it and went to a GP who advised me to adjust my diet and found my allergy root cause. After my alkaline eczema diet, my skin slowly recovered and I avoided chemical and dust mites as much as I could. My eczema is still around because now I have sensitive skin but it's much more manageable and with my diet, I hardly feel itchy and red.
So I typically strongly reconsider starting on ciclosporin but rather do patch or prick test first to find the root cause and avoid them.

[Marcie Mom]

Thanks for your sharing - for those who are on immunosuppressants, do not alter the dosage on your own. There is some science to the dosage/day, and how long to take it. It also comes with the experience of your doctor in assessing your age, health and severity of condition. Be sure that you're comfortable with it before starting as stopping suddenly will not only complicate the analysis of the condition but quite likely lead to more problems. Always work with a physician that you trust.