Fumaderm - questions.

[jiml]

Angie don't ever worry about negative posts they all help to paint a picture of how a treatment works, but I can understand you not wanting to put people off and to come back when you have positive things to add,
I think you have done the right thing takingg the step back to a lower dose and now gradually increasing

I hope it works for you as you have given Fumaderm a real good try. It's those pesky side effects that get people, I guess I was just very lucky
Thanks for posting I look forward to your next post  

@kato
Angie was up to 6x120mg tablets

[Angie]

Thanks Kath and Jim

Yep I was on 6 x 120mg and hopefully be back there next week.

Thanks again

Angie

[Caroline]

Hi Angie,

Sorry to hear you've been suffering!  

Could I ask whether you were on 6x 30mg or 6x 120mg?

Just out of interest...I think the side effects must vary dramatically between people.

Here's to you feeling better very soon! Onwards and upwards!

Kath

Indeed the side effects vary greatly. It seems that by long not everyone can deal with DMF. That also holds for my version of DMF, though less because of the slow release effect. But there are also people that have to stop using it as they are too sensitive for DMF.

[Angie]

Hi all

Just popping in to give an update.

Side effects lessened after 4-5 weeks on 5 a day, so got bloods done then started on 6 a day.  I was 4 days in and side effects were kicking in nicely, but was determined to stick with it, as skin not good at all on legs and some new spots appearing on hands. Anyway got blood results and lymphocyte count at 0.5. As this had been at 5 a day I didn't want to let it drop any further on 6.

I phoned my derm's secretary and asked her to ask for advice from derm as I'm not due back for a month .  

The secretary got back to me and I was advised to go back down to 5, apparently my system appears to be tolerating 5 better, not sure why when the count was at 0.5 on 5 a day. I explained that my skin had stopped responding on 5 and told it may just take longer.

I'm not sure if this will be the case as I've yet to be on the full dose for any length of time.  Also not sure if my lymphocyte count will stay static, increase or decrease.

Does anyone have experience of being 4 months in on Fumaderm but not at full dose.  I'm not sure if I'm one of the people who doesn't do well on them? I hope not as these were my last chance of any normality.

Not booked a holiday for this year as not  brave enough to go looking like this! Didn't have a holiday last year either as skin a mess.  Previously went abroad after 3 months of UVB , but that's a no no now.

Well thanks for reading and hope all are well.

Angie  

[Caroline]

Angie,

The dose doesn't matter.
It is not so that you explicitly have to have the full dose for Fumaderm to work, this depends from person to person.

There are people who have enough on two, depending on their metabolism. Unfortunately there are also people that have not enough on six. Therefore in the Netherlands we have Psorinovo which has no limitation going up, I know people who have eight even twelve.

On the lympho's you also never know. It can easily be that even when going to six, your lympho's will stay on 0,5 that cannot be predicted.
It may be smart to stay for a while on 5 and check the lympho's again. If nothing further improves, skin or lympho's, you still could give 6 a try. BUT of course having a careful view on the possible changes of the lympho's.

Hope you can feel a bit better with this info.

Caroline.

[jiml]

Hi Angie thanks for your nice comments  
16 weeks on Fumaderm I wouldn't worry about it not working you are getting the side effects which itself is a sigh. That the drug is working ... For some it is faster acting than others it depends on the absorption into your system
A member on here wrote this to me after being on it for over six months and having bad side effects

Quote:

---

Well it's been a major long haul a lot longer than we all thought the lowest point being admitted to NNUH for a few days but I am now 100% Psoriasis free the first time in 35-40 years. Dr Millington at the NNUH was hoping for 85% but it's surpassed that, all side effects have appeared to have worn off and a change of drugs for my PsA seems to have done the trick there too! How are things on your front? All good I hope.

ps my first ever christmas I can remember with clear skin!!!

So you have come so far please persevere as it should work and hopefully your lymphocyte count wil, come back up bud in the meantime , I think it wise to stick to five a day and close monitoring of your bloods
Jim

[Kat]

Hi all

Just popping in to give an update.

Side effects lessened after 4-5 weeks on 5 a day, so got bloods done then started on 6 a day.  I was 4 days in and side effects were kicking in nicely, but was determined to stick with it, as skin not good at all on legs and some new spots appearing on hands. Anyway got blood results and lymphocyte count at 0.5. As this had been at 5 a day I didn't want to let it drop any further on 6.

I phoned my derm's secretary and asked her to ask for advice from derm as I'm not due back for a month .  

The secretary got back to me and I was advised to go back down to 5, apparently my system appears to be tolerating 5 better, not sure why when the count was at 0.5 on 5 a day. I explained that my skin had stopped responding on 5 and told it may just take longer.

I'm not sure if this will be the case as I've yet to be on the full dose for any length of time.  Also not sure if my lymphocyte count will stay static, increase or decrease.

Does anyone have experience of being 4 months in on Fumaderm but not at full dose.  I'm not sure if I'm one of the people who doesn't do well on them? I hope not as these were my last chance of any normality.

Not booked a holiday for this year as not  brave enough to go looking like this! Didn't have a holiday last year either as skin a mess.  Previously went abroad after 3 months of UVB , but that's a no no now.

Well thanks for reading and hope all are well.

Angie  

Hang in there Angie!  

I understand about the holiday.  Last year we went on one with the grandkids and I'll admit it was difficult.  I was very self conscious about the scaling.  It was a summer resort type thing and I sat on the sidelines with a long cover up and even worried what the hotel maids thought about all the "white stuff" I left behind on the dark carpet.  But, I am glad I went and I have good memories.  What I'm trying to say is I understand the discomfort in worrying what others think and it's all different depending on what you can cover up and hide and still feel fairly comfortable about, but when it comes down to it.... if you feel like going and doing something, try not to let the psoriasis hold you back too much.    Yes, I know that is easier said than done but someone here once posted that we probably feel more people notice than they actually do.  If anyone noticed my extreme dandruff and constant itching or my diseased looking ears that I tried keeping covered by my hair, (I was able to keep most of the other areas hidden) then I didn't even feel the stares.  I was self conscious and that's normal, but I am really glad I went because the good did outweigh the worry.

I hope you get clear enough to enjoy the summer and maybe get out and about a bit to do something fun anyway.  

[Angie]

Hi Caroline, Jim & Kat

Caroline, I'm glad the dose isn't to crucial.  I will be sticking with the 5 until I see derm. Hopefully my lympho's will improve.
Ill be getting bloods done again at the beginning of may.  Thanks for reply.

Jim, Ahh credit where credit is due.     Yep still sticking with them and still getting the side effects.  Woken at 5.30 this morning
with stomach cramps, then the usual 30 mins in the bathroom!

I so hope i'm writing something like the insert you posted in a couple months time. Thanks for reply.

Kat,  That's good you enjoyed yourself.  I'm just not quite there yet, and would hate to go abroad and it be very warm to sit
on balcony for the duration, well until night time.  

Rather than holding off any longer, I have decided to give the holiday a miss this summer and asked my o/h to take the kids
himself.  I'm sure they will survive.  If all goes well I will try and get away during the school holidays in October.

Hope your well Kat and thanks for the reply.

Take care

Angie  

[Kat]

Kat,  That's good you enjoyed yourself.  I'm just not quite there yet, and would hate to go abroad and it be very warm to sit
on balcony for the duration, well until night time.  

Rather than holding off any longer, I have decided to give the holiday a miss this summer and asked my o/h to take the kids
himself.  I'm sure they will survive.  If all goes well I will try and get away during the school holidays in October.

Hope your well Kat and thanks for the reply.

Take care

Angie  

I totally understand. I hope I didn't sound like I was trying to change your mind, simply your post made me remember how hesitant I was to go last year and that for me, in the end it turned out ok. I'll be hoping you get clear and that you can look forward to doing something in October.

[Angie]

Hi Kat

Not at all, it didn't sound like that and I'm grateful for all advise.

Come October I will probably be so fed up with the scottish weather,
that I'll go anywhere for the sun and streak down the beach!! Ha ha
Just kidding.  

Thanks again Kat, much appreciated.

Angie