Arls Journey with Skilarence

[Arls2308]

Hi there,
I am new but old here as in the last time I posed ( under a diff name ) was back in 2011. I have very bad guttate and plaque p which can cover up to 75% of my body. I have had this disease since I was 13- I’m 36 now.
I had been keeping my p under control for 8years with Fumaderm. I found it a wonder drug. I had the usual side affects but managed them by taking my full dose which was 8x 120 mg at night before bed. I would have very predicable flushes, cramps and “toilet rushes” in the morning and the rest of the day would be a clear skin pleasure. Exactly this time last year I fell pregnant whilst on Fumaderm _ planned / not planned but very welcomed and naturally had to come off Fumaderm.  My skin flared badly and quickly. I had two lengthy sessions of light treatment to see me through what was otherwise a healthy pregnancy but as soon as I stopped, My skin flared massively again. Having returned to my dermatologist 6weeks post partum  I’m now on skilarence. I turned down Sterala as I was so confident in Fumeric acid \ DMF . I’m now 6 weeks into treatment and I only see mild improvement. I’m also experiencing little or no side affects ... So much so that I actually went and tried some of my old stash of Fumaderm to see if it would work but little reaction to it as well.

I’m on 5x120 this week moving to 6x 120 next week. I expected to see a better result by now and wonder does the lack of side affects indicate that this time it’s not going to work for me   

I’ll keep you updated as I move through this journey.

Thank you for the amazing content - this is an invaluable resource.

Arls x

[Kat]

Welcome back!

I have no experience with DMF, but others will be online soon and I'm sure you'll get some responses as there has been much talk lately of DMF and Skilarence.

I look forward to reading your updates!

[Caroline]

Hello Arls, and back Welcome.

Thank you for informing us about your use of DMF in the form of Skilarence.
To me there is no knowledge of the fact that once you have used DMF that it will not work afterwards, so I think there is a good hope.
Also the lack of side effects does not have to have a meaning to my idea, just continue and wait what happens.

There is a Dutch study that says something about the lymphocytes, a bit of lymphos going down should be a sign for the effectiveness, you can have that measured. I made a mention of this study in Bill’s thread RE: Bill's pure dimethylfumarate thread.

Stay strong and good luck!
We will be watching.

Cheers,
Caroline

[jiml]

Hi Arls and welcome back to the Club which has grown a bit since you were here before in 2011, but I'm glad you found your way back.

I am also on Skilarence I was changed from fumaderm to it a month ago after 7 years on Fumaderm and 7 clear years and for me it was a straight swap and so far only slight abdominal cramps.
I hope that it starts to work for you soon although it's not a fast working drug as you are probably aware but I can't see why it shouldn't work for you as well as fumaderm did before
I will follow your experience with great interest 
Jim

[Bill]

Hi Arls,

I've been on DMF for a bit over six and a half years now, but I haven't had breaks from treatment for more than six weeks. I am on two doses a week (530mg) and had to cut down the dose from 830mg a few months back as the tummy upset was getting a bit much for me. I agree with Caroline about the drug effect being related to the lymphocyte count: Mine stays between .95 and 1.05 for most of the time.

Anyway, I hope your treatment kicks in for you.

Cheers

[Fred]

Good luck with Skilarence a lot are switching from Fumaderm to Skilarence and it is getting prescribed more so your information will help others.

Do you remember your last username ? I can see if I can find your account.

I have made a small change to your thread subject and called it "Arls Journey with Skilarence" as we are getting a few similar threads and it will help in searches if we keep them different.

Welcome back by the way.

Fred.

[sunnyman]

Ciao Arls !

I'm in Skilarence too and i wait results
Wish you all the best with this drug !

[Arls2308]

Thank you all. 

I said six weeks but I’m actually 8 weeks on the treatment. I can remember the last time I had to stop and restart Fumaderm (when I moved country) and it worked quite quickly that’s why I’m frustrated this time that it seems to be much slower, but in saying that, this flare up is the worst yet. My next appointment with the dermatologist is at the end of August- I’ll stick it out until then and see if there has been much progress. 

Two main problems I have now 1. I cannot get a moisturizer that will work and keep the skin moisturized for longer than an hour at a time. It’s dry, cracked, itchy and sore all over me. 2. It’s hard to keep the chin up.. 


Ok on we go ... maybe the corner for turning is on it’s way .. 

Arlene 

[Fred]

Two main problems I have now 1. I cannot get a moisturizer that will work and keep the skin moisturized for longer than an hour at a time. It’s dry, cracked, itchy and sore all over me. 2. It’s hard to keep the chin up.

#1 Have you tried a good virgin coconut oil? You can read more here: Coconut Oil

#2 Yes it can be difficult but you're amongst others here that understand, so don't hesitate to offload if it helps. And we also have a very active [Group Specific] Board where I'm sure you will find somesthing to take your mind off things for a while.

[jiml]

Hi Arlene I know it must be frustrating waiting for skilarence to kick in. How long is it since you were on Fumaderm ?
It might take a while but hopefully not too much longer
I totally agree with the recommendation of coconut oil. It's something I use myself to moisturise even though I'm clear. I'm sure we have all been to that place where you're depressed because you can't see any improvement in fact you say it seems worse . Many of us come here because we do understand the helpless feelings we have, that in itself causes the flare up to worsen and so the spiral begins. We come and chat in the off topic section or read a joke, look through the poetry or recipes or members photos. I know keeping returning here has helped me. So what I'm saying is, we don't have a miracle cure but we have a lot of sympathetic members who will chip in with advice or just a chat
Whenever you like we can  meet in the virtual bar  and have a virtual drink and a chat if you like if I'm not there I guess someone else will be [Group Specific]