the end of ciclosporin....the beginning of fumaderm

[jiml]

Thanks jiml, I've not had many side effects to be fair, the warm flushes seem to have subsided it's been a few days since I've had one (and I'm at swimming now, luckily the hot guy isn't here this week) I had bad stomach cramps the other night but that's the first time, no doubt I'll get more once the fumaderm starts to build up though.

Good news the stomach cramps have started ( I don't mean that nastily but it shows the active ingredient is getting to work If you read the leaflet  Fumaderm leaflet it says that in there
Enjoy your swimming ( sorry hot guy has stayed away this week)  
Look forward to next update    
Thanks for updating its always nice to hear how things are working or even if they're not it's a true picture
Jim

[Caroline]

Thanks jiml, I've not had many side effects to be fair, the warm flushes seem to have subsided it's been a few days since I've had one (and I'm at swimming now, luckily the hot guy isn't here this week) I had bad stomach cramps the other night but that's the first time, no doubt I'll get more once the fumaderm starts to build up though.

Good news the stomach cramps have started ( I don't mean that nastily but it shows the active ingredient is getting to work If you read the leaflet  Fumaderm leaflet it says that in there
Enjoy your swimming ( sorry hot guy has stayed away this week)  
Look forward to next update    
Thanks for updating its always nice to hear how things are working or even if they're not it's a true picture
Jim

You have a very good, if not to say tough, attitude. !!! I admire you.
It is normal that when stopping a treatment, the psoriasis returns a little. Indeed when fumaderm gets working it is planned to go away again.
The flushes should remain irregularly. About the stomach cramps, they are not stomach cramps but belly or intestine cramps, I don't know so much as I hardly have them. But it can be that it is quite a party in your intestines.

[MaDbEaR]

I've still only had one episode of bad cramp so far
I was supposed to wait until four weeks of one tablet until I went up to two tablets, I made it through two weeks now I'm on two! I am covered in tiny spots of p everywhere and they are growing, it feels like most of my scalp is covered to. So in order to keep a small amount of my sanity intact I took the decision to increase the dose early, I'm not going up to 3 without checking with my derm first, got bloods next week on the same day as derm clinic so might see if a nurse can ask him if going up to 3 is ok as still got 3 weeks til my appointment.

MaDbEaR

[jiml]

Ooooh MaDbEaR .
I'm sorry your dermatologist has you on such a slow build up the manufacturer certainly advises to build up much faster than you are ( I put a link in an earlier post with the leaflet dosing regimen) which is increase by one tablet each week as long as the side effects are tolerable .... Which yours obviously are
I'm sure  the dermatologist is just being over cautious, but it's not helping you very much
You do need a steady build up in your system to have an effect
Ask the nurse why you are not taking them in accordance with the proper regimen as you have read that it is important if you can tolerate it
Ask about your blood count in particular the lymphocyte count and providing it has stayed within the normal range ...you should be on the normal build up ..... Unless there is a problem I'm not aware of why he is holding you back so far.

No wonder you are  

[MaDbEaR]

Hi everyone

Sorry its been so long since I last wrote, it's been a jam packed summer of day trips and working I've barely had time to think let alone sit and write a post!!

An update on my fumaderm, been on four tablets for ages, got the ok from my derm yesterday to go up to 5, side effects had reduced greatly, now they are back after only one day! Had some improvement on my right leg, then seemed to stall again! My hands are suffering at the moment with two splits on my left middle finger and two splits on the back of my right hand, just as they heal they split again.

My house is a complete mess and I'm dealing with a sick cat as well after he out of my bedroom window and had to have a tooth removed which then got infected and he keeps being sick so I'm constantly washing my hands which doesn't help.

I'm going on my first holiday in 11 years in Feb and was hoping my skin would be much better by then but its not looking good.

I'm so fed up of treatments starting to work then failing, I'm beginning to think I'll never have clear skin again and I'm doomed to be single forever. My stress levels are ridiculously high with my sons birthday (13 days away) and the anniversary of becoming a single mum (4 days later!) with which comes the worry of if his dad will try to find us.

Sorry for the long moaning post, it'll teach me to come on more often!!

MaDbEaR xx

[Fred]

Hi everyone

Sorry its been so long since I last wrote, it's been a jam packed summer of day trips and working I've barely had time to think let alone sit and write a post!!

An update on my fumaderm, been on four tablets for ages, got the ok from my derm yesterday to go up to 5, side effects had reduced greatly, now they are back after only one day! Had some improvement on my right leg, then seemed to stall again! My hands are suffering at the moment with two splits on my left middle finger and two splits on the back of my right hand, just as they heal they split again.

My house is a complete mess and I'm dealing with a sick cat as well after he out of my bedroom window and had to have a tooth removed which then got infected and he keeps being sick so I'm constantly washing my hands which doesn't help.

I'm going on my first holiday in 11 years in Feb and was hoping my skin would be much better by then but its not looking good.

I'm so fed up of treatments starting to work then failing, I'm beginning to think I'll never have clear skin again and I'm doomed to be single forever. My stress levels are ridiculously high with my sons birthday (13 days away) and the anniversary of becoming a single mum (4 days later!) with which comes the worry of if his dad will try to find us.

Sorry for the long moaning post, it'll teach me to come on more often!!

MaDbEaR xx

#1 You never need to apologise, people come and go as they wish. We appreciate members updating but it's not compulsory, and they will always be welcome back.

#2 Stress (even about your cat) can cause problems, as for the washing drying your hands out try using Coconut Oil

#3 It's not long till February but things could change by then, if they haven't well sod it just go and enjoy.

#4 Unfortunately treatments do work and they do fail, but there is always something else these days and a lot more in the pipeline.

#5 As for being a single Mum and worrying about your ex trying to find you, sorry I can't help on that one but for what it's worth I would say enjoy your sons birthday and worry about it If it happens. ...................... (Fred goes off to hide, as he sometimes can feel he has said too much)

[jiml]

Ooh MaDbeaR you have been through the mill. And don't worry about coming and moaning, sometimes it's nice to get things off your chest..
Try and stick with the fumaderm, your build up has been to slow but you are getting towards maximum dose of six a day, now five may well do it for you .... Have you noticed any improvement since starting the tablets or has the psoriasis stayed the same?
Stress is obviously not helping but it's something that's difficult to control. I just peeped at Freds post and he's right no point worrying about your ex finding you, just hope it doesn't happen, life can be difficult and it's easy for me to say don't worry ... But I don't have your problems.

But we are here for you to give what support we can
I will urge you to keep trying with the fumaderm if there is some improvement, as the next step to six may well see big improvements .. If the side effects are getting difficult .. Keep talking with us... They will get less

Freds right also about there are more drugs in the pipeline for you to move onto but I'm still hopeful for fumaderm
Jim's turn to run and hide

[MaDbEaR]

Thanks Fred, I've tried using coconut oil, it seemed to make it worse though after a while.

Hopefully my stress levels will reduce when the cats better, everything is lined up for the holiday (worrying about my sons name change being an issue for his passport, and getting him the time off school!) and September is over and we're back into the school routine.

His dad couldn't even be bothered to turn up to see him a few months after we left him so I'm probably writing over nothing!

MaDbEaR xx

[MaDbEaR]

No need for either of you to hide!! I appreciate your honesty - after everything I've been through it takes a lot to make me cross!!

I've seen some improvement, but the itching has returned with a vengeance and with the weather changing it's only going to get worse!

[jiml]

No need for either of you to hide!! I appreciate your honesty - after everything I've been through it takes a lot to make me cross!!

I've seen some improvement, but the itching has returned with a vengeance and with the weather changing it's only going to get worse!

No I think it will get better, I will do your positive thinking, as long as the side effects are manageable you will see an improvement shortly I'm convinced
When I had to reduce my dose to 3 a day my psoriasis came back but not too badly because I quickly upped my dose again but it took weeks to get back to clear again.
So I think you will get there but as you have built up slowly you haven't got enough dmf in your system to hold the psoriasis back ( but that's just my opinion) stay positive
Jim