Author Topic: Ciclosporin..advice please  (Read 4205 times)

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Offline devilsofdarkness

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Re: Ciclosporin..advice please
« Reply #30 on: July 14, 2009, 08:14:27 PM »
Hiya hun, as you know the MTX didnt agree with me, giving me breathing probs and the acetretin I cant have as my cholestrol is too high and ive tried light treatment, light with psoralen, all the creams and wonder potions you can shake a stick at and none of them worked for me....Luckily the cyclo is working for my skin but not for me with the side effects!! Im just managing to stick them out for now but how long that lasts im not sure, depends on derm really so what works for one dosent work for another....

Does the coal tar help???

At least you can rest a bit easier without the horrendous side effects now hun and at least you tried it....Hopefully it wont take long and you will find YOUR magic cure....here's hoping!!

Take care hun
hugsss

deb
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ellieh

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Re: Ciclosporin..advice please
« Reply #31 on: July 14, 2009, 08:16:49 PM »
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The dermie doesnt believe MTX works for anyone other than little old ladies, but since I never follow the norm, maybe it will work for me.
Well I don't consider myself a little old lady, more like a slightly overweight 31 year old lady  ;D, and it's working for me so you never know. After 6 weeks on MTX my face is almost human again, my hands look like hands and don't feel like sandpaper anymore, my hearing has come back so it's obviously cleared the inside of the ear I was deaf in for 4 months, and my P is now a purely visual problem, I'm not flaking, bleeding or itching, so I'd definitely say give it a go, I would never have thought it would help me so much in such a short space of time. My derm did actually give me MTX rather than ciclo as she believes it works much quicker.

Side effects I've had:
First few weeks I was really cold but according to the derm that was actually because I was erythrodermic and the state of my skin mucked up my temperature gage or something, that went after about 10 days.
First two 7.5 mg doses made me feel tired, had to have a a quick afternoon nap with my daughter a couple of days, but nothing too serious to cope with, also felt a bit seasick, reminded me of being pregnant but without actually throwing up LOL.
Then went up to 15 mg, the first week I felt pretty awful, tired and nausea, I was actually sick that week.
Next 3 weeks on 15 mg I was absolutely fine, wouldn't have known I'd taken them.
Then last week I felt a bit nauseous the day after but only lasted 3 or 4 hours.

So basically pretty good considering, I'd say it's definitely worth it for the way it's working, in fact my derm tried to persuade me to stop taking it last week and I begged her to let me have at least another month, think I might be able to wear a pair of shorts by then for the first time in 16 years.

Offline +xausted

Re: Ciclosporin..advice please
« Reply #32 on: July 16, 2009, 08:44:16 PM »
If it can go wrong it will
I still can not get the coal tar stuff...the story is so long behind this disaster that I can not even relive it by writing it one here otherwise I will cry or throw something. Moisturising isnt helping, Dobavet isnt working...I am itching, flaking and hurting already
.Make this go away now, or at least get me treatment!!!!!!


P.s Ellieh, thankyou for your post xxxx