Fumaderm - questions.

[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!  

---

EDIT By Fred: I made the quote work correctly.

[Caroline]

Just back from derm.

Long story short, she says my body is not liking Fumaderm , according to bloods and side effects continuing.

Unfortunately it seems so Angie. The bloods are not a problem yet, but the side effects should have gone down AND more it should have helped by now.
There is one possible approach to find out if your body really does not like DMF. And that is trying Psorinovo in the same dose for a while.
If that also gives side effects, than you definitely are not the person for DMF.

She knows I have never been keen to try the biologics ( though wasn't keen on systemics either, now had bside with use.  She also did point out , as I was leaving that if I had went the injection route, I would be clear by now.

That is a nonsense remark. If fumaderm would have worked for you, you would also have been clear. More over also the injection route is not flawless.

I will do  my homework and try to find info on here, not sure how long they have been used in America?

I've to continue on the reduced dose of 3 a day and return to her in 4 weeks when it should be in place .

I would very much appreciate any info if anyone has any.

Thanks

Angie

I hope someone has more information for you Angie !

Caroline

[Caroline]

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.

[Fred]

@Angie Apremilast (Otezla): These threads may help.

Otezla gets green light from Europe for psoriasis & psoriatic arthritis
Otezla soon to be available in Europe for psoriasis & psoriatic arthritis patients.
Otezla 2 year results on psoriatic arthritis published
Otezla improves quality of life in psoriasis patients
Otezla gets FDA approval for Psoriatic Arthritis
Apremilast first phase 3 results
Apremilast phase III for psoriasis

Oh and Quest4Cure Uses it I think but then our Quest uses a lot of things.  

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@Caroline "That is a nonsense remark. If fumaderm would have worked for you, you would also have been clear. More over also the injection route is not flawless"

Whilst I agree the Bio's are not flawless (nothing is), Fumaderm takes a lot longer to start working especially before you start seeing results, but with the Bio's you notice results very quickly so the dermatologist was right  

[Caroline]

@Angie Apremilast (Otezla): These threads may help.

Otezla gets green light from Europe for psoriasis & psoriatic arthritis
Otezla soon to be available in Europe for psoriasis & psoriatic arthritis patients.
Otezla 2 year results on psoriatic arthritis published
Otezla improves quality of life in psoriasis patients
Otezla gets FDA approval for Psoriatic Arthritis
Apremilast first phase 3 results
Apremilast phase III for psoriasis

Oh and Quest4Cure Uses it I think but then our Quest uses a lot of things.  

---

@Caroline "That is a nonsense remark. If fumaderm would have worked for you, you would also have been clear. More over also the injection route is not flawless"

Whilst I agree the Bio's are not flawless (nothing is), Fumaderm takes a lot longer to start working especially before you start seeing results, but with the Bio's you notice results very quickly so the dermatologist was right  

Fred, if you read well the dermatologist did not mention a "time", she just mentioned that Angie would have been clear by now, which is equal to the fumaderm approach.

I know you are in favor of the biologicals, but in principe everyone is in favor of his own approach if this works.
DMF has disadvantages and advantages, so have bio's

[Fred]

Fred, if you read well the dermatologist did not mention a "time", she just mentioned that Angie would have been clear by now, which is equal to the fumaderm approach.

I know you are in favor of the biologicals, but in principe everyone is in favor of his own approach if this works.
DMF has disadvantages and advantages, so have bio's

You know me I like to stimulate conversation.  

But we better not take this thread to far off topic.  

[jiml]

Angie I think you have made a wise decision coming off the Fumaderm, you  tried really hard to make it work, you had extreme side effects and little clearance. Many would have given in long before you had to.
I think if you had got clearance you would have stuck with the side effects... But to be honest the lymphocyte count was beginning to get worrying. The length of time they were low was making you vulnerable

I take my hat off to you for your determination, sadly it was not to be

Otezla should be a good drug for you, I will watch with interest your story when you start that, I'm hoping you will chronicle it here somewhere .
I wish you good luck and hope you get some relief soon
Jim

[Angie]

Hi

Debbie - I have been on Fumaderm for 21 weeks and it should have worked better by now and the side effects should have subsided. I still think it's a good drug and would say defo stick with it, if your one of the lucky ones it should get better and show great signs of improvement . Good luck with them.

Fred - thanks for the info. I've had a wee look through and will do more homework .

Caroline - wouldn't know where to start to get psorinovo, and when I have asked hospital in the past they don't know what I am talking about. Had bloods done again today to check the lymphos , all other bloods fine.
I will continue on the 3 a day and keep an eye on them until I return to derm in 4 weeks. Thanks for reply.

Jim - yep certainly dug my heels in with this med, but to no avail . Yes I also said that to derm today but she said if it was only the lymphos down and no side  effects and clear skin she would have continued with them keeping a close eye!!

I will certainly start a new thread when I get them.  Thanks

Angie  

[jiml]

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  

[Angie]

Jim - just 5 months, (21 weeks ) I've been on them

Angie