Fumaderm - questions.

[jiml]

Jim, would it have been better had I been able to get DMF prescribed here? Yes and no. In hindsight 720 mg per NO LINKS ALLOWED (2 x 360 mg) depressed my white cell count too much, and 3 x 240 mg would have caused a similar suppression and been less effective against my psoriasis. I would not have had the liberty to play around with the dosage as I have done, and I believe that the raw DMF may have advantages over the tablet form for the way I take it. As it is I am controlling my psoriasis, reducing my psoriatic arthropathy and slowly regaining flexibility and range of movement, all without the fear of a depressed white cell count.

Cheers,

Bill

I can see your point Bill and it is a good observation, but it would be better in your country if you had DMF available to all psoriasis sufferers, as not everyone can set up a home laboratory to do as you have done.

I can agree with you and the knowledge you have gained by tinkering ( no that's not the right word but you know what I mean ) with the size and frequency of the dose you have achieved a very livable regime, on a DIY basis. That has given you the same life changing  effect as I am having here in England
As I say I to you but it's not for everyone .....although I think if I were in Australia I might have followed your lead and given it a go

[Bill]

I agree with you, Jim. It is unfortunate that such an effective treatment is not available in Australia. A reform of the legislation is well overdue.

From varying the dosage I am now of the opinion that the therapeutic effect of DMF relates to the peak plasma concentration of the MMF. So in my opinion the way in which DMF is used to treat psoriasis currently is inefficient against the disease and puts patients at a greater risk of immuno-suppression. Hopefully there is no potentiation of other harm to me from this regime, but thus far I have been well apart from the tummy aches.

Cheers,

Bill

[jiml]

I agree with you, Jim. It is unfortunate that such an effective treatment is not available in Australia. A reform of the legislation is well overdue.

From varying the dosage I am now of the opinion that the therapeutic effect of DMF relates to the peak plasma concentration of the MMF. So in my opinion the way in which DMF is used to treat psoriasis currently is inefficient against the disease and puts patients at a greater risk of immuno-suppression. Hopefully there is no potentiation of other harm to me from this regime, but thus far I have been well apart from the tummy aches.

Cheers,

Bill

That's most interesting, I was due to see my dermatologist Friday but had the appointment put back to this coming Friday ,
I am going to relate your notes to her and see what she thinks, although I think I know what her reaction will be, which will be the standard " we know best " and live with her blinkers on... I hope I'm wrong but I would have a bet that anything not written in their bible will not be considered. But I hope to challenge her mind

[Caroline]

I agree with you, Jim. It is unfortunate that such an effective treatment is not available in Australia. A reform of the legislation is well overdue.

From varying the dosage I am now of the opinion that the therapeutic effect of DMF relates to the peak plasma concentration of the MMF. So in my opinion the way in which DMF is used to treat psoriasis currently is inefficient against the disease and puts patients at a greater risk of immuno-suppression. Hopefully there is no potentiation of other harm to me from this regime, but thus far I have been well apart from the tummy aches.

Cheers,

Bill

That's most interesting, I was due to see my dermatologist Friday but had the appointment put back to this coming Friday , ,
I am going to relate your notes to her and see what she thinks, although I think I know what her reaction will be, which will be the standard " we know best " and live with her blinkers on... I hope I'm wrong but I would have a bet that anything not written in their bible will not be considered. But I hope to challenge her mind

"We know best."
They all say that, doctors, bankers, government, industries, but ... They don't.  
I heard it so much and it just doesn't add up. The brains they have are locked and not open. You need a good strong mentality to be a good speaking partner of them.

[Angie]

Hi All

Just been to derm appointment and I am reading through threads on my phone, so I will update properly later.

I have a quick question ( another one!!)

I remember reading somewhere Fred wrote something about when going down the stelera route, it is a different route from other biologics. But can't remember exactly what it meant.  If you had a choice between stelera and humira, either from experience or knowledge, which would it be?

Thanks

Angie

[jiml]

Im not sure either I know with Fred's Stelara it's a three monthly injection whereas Humira is I think every two weeks . I'm not sure if that's accurate it's as I remember it
I'm sure Fred or someone will fill you in shortly

[Fred]

I remember reading somewhere Fred wrote something about when going down the stelera route, it is a different route from other biologics. But can't remember exactly what it meant.  If you had a choice between stelera and humira, either from experience or knowledge, which would it be?

I'm not sure which of my posts you are on about, all I can think of is what Jim said.

Stelara is one shot every three months whereas Humira is on shot every two weeks, it could be what you are thinking about. Or it could be something like Stelara is an easy self injection, but Remicade has to be done in hospital as it goes in the vein.

My personal experience is that I like Stelara the best, but the main reason being it worked the best for me. Enbrel was the overall best for psoriatic arthritis but it was one shot twice a week and it gave up working, but it comes down to what works best for you. If Remicade was still giving me the best results I would be happy to go onto hospital every six months, sorry I can't be of any more help but if you can find the post it may bring ring a bell for me.

If you're going down the Bio road, I would just go with the flow and see what they prescribe first for you to try rather than go with a preference. The reason I say that is because what works for one may not work for another, and you can easily switch to another should one not be suitable.

[Debbie]

Hi everyone

Just a wee quick update .  Still on 5 a day, lymphos still 0.5.  Side effects - still not good.

Had rubbish weekend, stayed in as couldn't go far from loo. Lots of lost sleep, and I think I have counted the tiles in the bathroom lots and lots !  That's when I'm not trying to get rid of the pins and needles in my feet from sitting for so long! Ha ha

Just when I think my system is getting used to them I seem to go backwards.  Not sure why as I don't change anything. Can go 2 days with just one visit to the loo - though usually woken up at an ungodly hour. Then ok for rest of day , then crash, bang, wallop next three days horrendous. I've actually reduced to 3 over the last three days as bloody tired of it.

Skin much the same, arms ok, legs rubbish, some scale appearing back on ears and eyebrows .  So not sure the next step.

I have derm appointment tomorrow so will see what she thinks -- not holding my breath for any good suggestions from her as I find it's a case of keep taking the meds and see you next time.

I hope your all well.

Angie  
[/yes I am also having same side effects, on,y been on Fumaderm for 7 weeks now, but psoraisis getting worse - awake half the night itching! has hospital yesterday and keep taking neds it can take months before it works!   ]

That could be correct Debbie, if I remember well it took me three months.
It is a known reaction that the psoriasis could worsen first.
So annoying that you cannot order/use Psorinovo, i am quite sure that would be a different experience.

Hi Debbie I'm in agreement with Caroline regarding the timescale. You are still early in the treatment and it may well get a bit worse before it gets better, Angie was unfortunate in that it didn't work after 7 months
I would say if your bloods are good you should stick with it a while longer as you have probably had the worst of the side effects. And the drug should start working on your skin soon
Fumaderm has a very good track record and works for over 70% of people I'm hopeful you will be among them, and will soon be enjoying life scale free .....and side effects down to a minimum mainly just odd flushes


Edited by Jiml to correct error time on drug should read 5 months not 7
Thanks Angie  

Hi Angie, this Fumaderm seems such a strange drug in the way it does not seem to be consistent- have a few days no side effects and then all change! Then the same with ny psoraisis, just seems to be getting better for a few days and then the next day I,m 2 steps back again!
I saw someone today, who lives near me, at the leisure centre as I try and swim when I can, he says you,re walking today, last week I saw tou in your mobility scooter? i,m sure some people think I put it in - if only lol!

[Debbie]

[quote='Angie' pid='47969' dateline='1431464907']
Hi everyone

Just a wee quick update .  Still on 5 a day, lymphos still 0.5.  Side effects - still not good.

Had rubbish weekend, stayed in as couldn't go far from loo. Lots of lost sleep, and I think I have counted the tiles in the bathroom lots and lots !  That's when I'm not trying to get rid of the pins and needles in my feet from sitting for so long! Ha ha

Just when I think my system is getting used to them I seem to go backwards.  Not sure why as I don't change anything. Can go 2 days with just one visit to the loo - though usually woken up at an ungodly hour. Then ok for rest of day , then crash, bang, wallop next three days horrendous. I've actually reduced to 3 over the last three days as bloody tired of it.


Skin much the same, arms ok, legs rubbish, some scale appearing back on ears and eyebrows .  So not sure the next step.

I have derm appointment tomorrow so will see what she thinks -- not holding my breath for any good suggestions from her as I find it's a case of keep taking the meds and see you next time.

I hope your all well.

Angie  
[/yes I am also having same side effects, on,y been on Fumaderm for 7 weeks now, but psoraisis getting worse - awake half the night itching! has hospital yesterday and keep taking neds it can take months before it works!   ]

That could be correct Debbie, if I remember well it took me three months.
It is a known reaction that the psoriasis could worsen first.
So annoying that you cannot order/use Psorinovo, i am quite sure that would be a different experience.

Hi Debbie I'm in agreement with Caroline regarding the timescale. You are still early in the treatment and it may well get a bit worse before it gets better, Angie was unfortunate in that it didn't work after 7 months
I would say if your bloods are good you should stick with it a while longer as you have probably had the worst of the side effects. And the drug should start working on your skin soon
Fumaderm has a very good track record and works for over 70% of people I'm hopeful you will be among them, and will soon be enjoying life scale free .....and side effects down to a minimum mainly just odd flushes


Edited by Jiml to correct error time on drug should read 5 months not 7
Thanks Angie  

Hi Angie, this Fumaderm seems such a strange drug in the way it does not seem to be consistent- have a few days no side effects and then all change! Then the same with ny psoraisis, just seems to be getting better for a few days and then the next day I,m 2 steps back again!
I saw someone today, who lives near me, at the leisure centre as I try and swim when I can, he says you,re walking today, last week I saw tou in your mobility scooter? i,m sure some people think I put it in - if only lol!
[ps this comment was to everyone

[jiml]

Hi Debbie yes it is a strange drug and it affects us all differently, I have been lucky and got through all the side effects and got to a clear skin
Can I ask this is week 10 or 11 for you if my memory is any good . So are you taking6 tablets a day?

If so you should start to get consistent results soon with clearing ,
Which side effects are bad for you is it cramps or diarrhoea . Ignore people with ignorant remarks.... It could be them next
Are you seeing much change in your skin?