Change of meds

[soosieb99]

Hi all
Am following Fred's advice and starting a thread here.

Long story short. Dermotologist has taken me off acitretin as of yesterday and wants to put me on Ciclosporin. I am a bit wary as the side effects with this seem even worse and it looks like I am susceptible.

So any thoughts or advice would be appreciated.

Thanks

S

[jiml]

Hi all
Am following Fred's advice and starting a thread here.

Long story short. Dermotologist has taken me off acitretin as of yesterday and wants to put me on Ciclosporin. I am a bit wary as the side effects with this seem even worse and it looks like I am susceptible.

So any thoughts or advice would be appreciated.

Thanks

S

Hi Soosie
I think that's a good idea as you will get better noticed here
Myself having not used acetretin or cyclosporine I can't really offer any useful advice, apart from read up as much as you can about the various options, and go to your next appointment with questions about the drug they propose and if you don't want to take it tell them why ....I don't know your circumstances, but it might be you are considering children, or have liver or kidney weaknesses that are given in the list as reasons not to take the drug
I wish you good luck and hope you get some good advice from cyclosporine users here

[Caroline]

Hi Soosie,

As Jim says, if you are planning to have children, than that is a counter reason not to use it.
Personally I should advise you certainly to do some research  about cyclosporine, it is not a drug I would like to take.
Still I know that people are doing good on this medication. One of our BN'ers (Bekende Nederlanders, which means Well known Dutchmen from TV) is using it and he seems to do fine on it. He also has tried my drug, DMF, before that, but could not get used to the discipline and the slowness of working.

Keep a good eye on yourself I would advise you. Record in the thread over here, on how you are doing. It always can be good to write down and reread your own experiences.

Good luck with it of course,
Caroline

[soosieb99]

Thanks for the advice.

For the record I am not contemplating children as I have been there, done that and gone way way past it! Lol. I am a granny now. I just don't want to put my body through anything else. Have had bad flushes since I started the tablets which is a bummer after going through the menopause for 10 years! My hair is thinning badly, I have a buzzing head, my nails are rubbish and my feet itch still to distraction. All that and I still keep getting pustules too! So the thought of continuing with all that and more fills me with dread.

S

[Fred]

I've not tried either myself, and to be honest it's not something I would want to try. But that's just my own opinion as I hate oral treatments and prefer injections.

Micky made an information thread about it which may help: Ciclosporine

[Grizzly Bear]

Thanks for the advice.

For the record I am not contemplating children as I have been there, done that and gone way way past it! Lol. I am a granny now. I just don't want to put my body through anything else. Have had bad flushes since I started the tablets which is a bummer after going through the menopause for 10 years! My hair is thinning badly, I have a buzzing head, my nails are rubbish and my feet itch still to distraction. All that and I still keep getting pustules too! So the thought of continuing with all that and more fills me with dread.

S

Right Granny Soosie, sit yourself down..........

I was on cyclosporine and it was OK but not brilliant for me.

It cleared up some psoriasis but not all of it.

Now, after a few months and having the dosage put up to the max etc, I noticed I was was sickly, my giblets felt like a washing machine going round and round.
In the end I was throwing up and my old derm doc then put me on enbrel which was a hell of a relief I can tell you Soosie.
I'd ask your derm doc for something else like stelera, if you want or can take bio drugs ?

But, I would try to avoid cyclosporine if I was you.

Good luck Soosie

[soosieb99]

Thanks for that info. I sm fairly sure I'm not going to bother with it. Can't see the point of feeling worse from taking the drugs than just with the condition!

S

[jiml]

Thanks for that info. I sm fairly sure I'm not going to bother with it. Can't see the point of feeling worse from taking the drugs than just with the condition!

S

I agree Soosie sometimes the treatment can be worse than the disease, so there's no point in putting yourself at risk, if the time comes that it's a problem that's the time to go for another treatment plan

[Fred]

Thanks for that info. I sm fairly sure I'm not going to bother with it. Can't see the point of feeling worse from taking the drugs than just with the condition!

S

I agree Soosie sometimes the treatment can be worse than the disease, so there's no point in putting yourself at risk, if the time comes that it's a problem that's  the time to go for another treatment plan

Yep, if you can do without then keep going. Psoriasis is a life time problem so you have plenty of time to use meds when it gets bad.

[soosieb99]

Thanks guys.
S