Author Topic: new to cyclosporin and need help!!!! (Read 1375 times)

kween21 · « **on:** January 11, 2010, 05:59:26 PM »

Hello,
ive started 150mg dose of cyclosporin, today being my second day on it. I feel extremely cold, thirsty and in need of the toilet alot, are these normal side effects? Also, can anybody share the types of side effects they got as I am terrified! Psoriasis has gotten me down so much, i feel like im 18 going on 80 :'( :'( wish i could just be normal

Nicknackwack · « **Reply #1 on:** January 11, 2010, 06:19:12 PM »

Hi kween and welcome to PHO from me

I used cyclosporin for 9 years so hope to alay your fears

It'll take a couple of weeks for your body to adjust to Cyclo . Common side effects at the initial stages will be an upset tummy, changes to your body temperature and feelings of light headedness and generally feeling a bit out of sorts. But you can minimize the side effects in numerous ways. Firstly drink lots of water and I mean lots ! Cyclo is quite toxic and you need to flush out the toxins and drinking water will help your renal function operate more efficienctly. Secondly, always take Cyclo after a meal and never on an empty tum. I found bananas pretty good at absorbing Cyclo

It'll take a few weeks for you to adjust. Cyclo will be dampening down your immune system which is what it's supposed to do and in turn will reduce your skins cell production and reduce any inflammation that you have with your psoriasis. You should see a noticeable difference hopefully within a month.

No need to be terrified. Cyclo is a proven effective treatment for managing p very effectively. Just make sure you get regular blood checks, keep an eye on your blood pressure and make sure you keep your appointments with your Derm.

No doubt others here will suggest more tips to help you but don't hesitate to ask any more questions as we are all here to help

Nick

Helen_Donegan · « **Reply #2 on:** January 11, 2010, 06:27:44 PM »

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Hello,
ive started 150mg dose of cyclosporin, today being my second day on it. I feel extremely cold, thirsty and in need of the toilet alot, are these normal side effects? Also, can anybody share the types of side effects they got as I am terrified! Psoriasis has gotten me down so much, i feel like im 18 going on 80 :'( :'( wish i could just be normal

There is no such thing as normal - you are going through a bad patch and will improve - there are a lot of ways P can be dealt with now - 10 years ago the situation wasn't as good, in another 10 years there will be an actual cure

I moan and complain all the time but know there are worse things (not many mind you

) - I really hope you will get a lot more joy out of life soon

Paulio · « **Reply #3 on:** January 11, 2010, 08:55:36 PM »

Hi Kween

I hope the side effectes improve for you soon & the cyclo works well!

Paul

lee · « **Reply #4 on:** January 11, 2010, 09:49:45 PM »

I,m starting it on Wednesday. $:-\$

And I have to take 200mg in the morning and 150mg at night.

I dont know what to expect.

Luvvi · « **Reply #5 on:** January 11, 2010, 11:33:18 PM »

Nicks given good advice as always. Lots of fluids and as much rest as you can until you adjust to taking it! Regular blood tests and blood pressure monitoring are vital!

Good luck!

Bombag · « **Reply #6 on:** January 12, 2010, 11:25:51 PM »

I was the same as you when I was first prescribed Cyclo,however there is nothing to worry about,as previously said regular blood tests & drink plenty of water,keep your head down when you need to (listen to your body & rest when you need to).It has not affected my social life & not been detremental in any other way so far except a rise in BP which is quite controlable & reversable.Good Luck

devilsofdarkness · « **Reply #7 on:** January 13, 2010, 05:19:47 PM »

Hi dont know if this will be of any help to you but i did a cyclo thread when i went on it last year and there is a lot of info and my experience of the drug on there

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Rebecca1234 · « **Reply #8 on:** January 26, 2010, 10:12:36 AM »

Hi kween21, if this info helps at all - I've been taking 200mg neoral a day since November, and I had a bad first two weeks. (I felt like I had been hit by a bus) but after a couple of weeks I was fine, I take it still, with no side effects and I wouldn't even know that I'm on neoral. Everyone is different, how are you feeling now?

Tom_B · « **Reply #9 on:** February 20, 2010, 05:04:34 PM »

On 300 - 350mg a day ..... settled and no side effects ....

NCU · « **Reply #10 on:** February 22, 2010, 09:54:52 AM »

I had exactly the same thing, I was off to the loo every five seconds, maybe it's your body trying to flush it out, so probably very good advice to drink plenty of water, I don't but will start. It is scary going on it, I totally empathise. I had to give up breastfeeding my baby in order to take it which broke my heart andd made me all the more resentful of the stupid P.

But it's not so bad now, hardly notice I'm on it but I am definitely more hairy which I wrote about in my thread, sorry to repeat! Also, don't know if anyone else has had this but my periods stopped, no complaints there though!
I was told by my derm that I'm far too young to be on this for the rest of my life and he suggested homeopothy, shocking for an NHS doc. Think anything is worth a try.
Good luck to you. X

squoink · « **Reply #11 on:** February 22, 2010, 10:31:02 AM »

If a trained physician is recommending homeopathy then I'd recommend getting a new derm.

NCU · « **Reply #12 on:** February 22, 2010, 02:32:02 PM »

Really, why? $:-\$

squoink · « **Reply #13 on:** February 22, 2010, 06:56:08 PM »

Because homeopathy is quack medicine and has never proven itself superior to placebo in properly controlled clinical trials.
Psoriasis is a serious disease and your best bet is evidence based medicine

NCU · « **Reply #14 on:** February 22, 2010, 08:21:18 PM »

I used to be really cynical about things like that too, but even placebo can be effective. Mind over matter, I'm a firm believer in that. If psoriasis can be stress related than surely it's possible to control it with positive thinking along side everything else. I'm at the stage where I would literally try anything!

squoink · « **Reply #15 on:** February 22, 2010, 09:51:10 PM »

Hi NCU,

It's not cynical about homeopathy- it's fact. Some but not all conditions are placebo responsive. If you get a placebo response to anything (however bizarre) then great. Placebo responses still tend to be small and not long lasting however - that's why conventional medicine has to prove it works well over and above a known placebo response.

Good luck with whatever you try though

NCU · « **Reply #16 on:** February 22, 2010, 10:17:46 PM »

Hi Squoink!
I hear what you are saying, I watched a programme once about homeopathy in which they explained that really there's nothing in it.
Do you not believe that if you believe something will work it could make a difference? I mean thaty have done tests with placebos on very real diseases like cancer and found amazing responses. And people on here talk about meditation and such like.
Do you mind if I ask how your p started?
Mine started because my life was going ..........rubbish. I got just a few little bits, elbows and hands, looking back don't know what I was moaning about, nothing bad at all and it wasn't sore and didn't itch, I suppose I was being a little vain really! But then in october some prat in a van drove into the side of me, I'd never had an accident before and was very shaken, about two days after that my P went mad, became sore and itchy and started to spread like mad. Then it was just one long round of it flaring more and more, I became EP, couldn't walk or use my hands and ended up in hospital. I know lots of people have had theirs for years but I think mine flared up very quickly in a very short space of tie, that's why I'm not ready to accept this is for life. If it's stress that can start it then surely I can make my mind control it? Am I completely delusional?! $:-\$

squoink · « **Reply #17 on:** February 23, 2010, 10:46:02 AM »

Hi NCU!

You ask "Do you not believe that if you believe something will work it could make a difference?"

Absolutely. That IS the placebo effect - and can be invoked by any old rubbish that someone believes in.

The crucial thing to realise is that is is invariably short lived and not necessarily particularly effective. It's only a small percentage of people that get a placebo response as well.

Modern drugs have to prove themselves for a large percentage of patients and be more effective than drugs already out there that in turn have had to prove themselves effective over and above placebo.

I don't have P. I'm 42 and have lifelong, severe, full body atopic dermatitis. I'm 3 days into my first course of ciclosporin - no side effects so far

Stress can be an exacerbating factor but it's not causal.

No, you're not delusional

but I very much doubt that a reduction in stress will effect a psoriasis cure but anything you can do to reduce stress is gonna be a good thing. Sport is good, but my skin condition has precluded that for many years

I've tried meditation but it wasn't for me. Laying on the sofa and listening to your favourite music is good.

Take care

Steve

hayliex · « **Reply #18 on:** February 23, 2010, 04:36:44 PM »

hi,
my experience with it was not that good. i had bad side effects they made me violently sick, dizzy, thirsty also the worst was they made my gums swell which cost me a very large dentist bill.

i really hope u dont experience that, but they were all my side effects xx

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Author Topic: new to cyclosporin and need help!!!! (Read 1375 times)

Nicknackwack