Fumaderm advice wanted

[Kato]

Hi All,

I am hoping someone might be able to give me some advice on Fumaderm.

To give you some background, I have had moderate widespread psoriasis for the last 6 years. It started as one small 'dot' on one arm and quickly spread pretty much everywhere (arms, legs, trunk, inside nose & ears, face, scalp, PPP on palms and soles). I have been prescribed around 15 steroid/vit D analog creams which have maintained my skin but never helped clear any of it up & of course didn't stop new patches from forming.

I have had two courses of UVB treatment, both of which compeltely cleared my skin but only for about a week after finishing each 37 session course. My psoriasis would be back to 'normal' within a month of finishing.

I went to see a new Dermatologist who agreed we needed to look at other options as it wasn't even really feasible for me to even apply the creams as I had SO many isolated patches, all of which were extremely red and inflamed.

We discussed the options available to me and decided to give Fumaderm a try. I started out on just 30mg a day and now 6 months later I have just increased my dose from 6x120mg (720mg total daily) up to 8x120mg (960mg total daily).

My skin has responded fantastically and pretty much all my old patches have gone, leaving only discoloured skin. However, I'm still getting a LOT of new small patches mainly around my hips and the top of the backs of my legs. My Derm advised me to go up to 8 per day if they hadn't cleared up.

I'm a little worried that this dose is VERY high but I have nothing to compare it to. My blood work is all fine but now I'm getting the horrendous gastric side effects again & would just generally like to know about other people's experiences.

Any advice appreciated!

Thanks :-)

[Fred]

This thread explains about Fumaderm

But you will soon find the Fumaderm (DMF) gang will post some answers later.

I have changed the heading of this thread to Fumaderm advice wanted, as we have a few Fumaderm threads and will avoid confusion.

I'm sure Jim, Caroline, and some other members will have plenty of answers for you.  

[jiml]

Hi Kath and it's good to see another Fumaderm user on the forum..... We have several on here now who are enjoying the success of this little known treatment

I like you have run the course of steroid creams UV treatment and was fortunate enough to be started on Fumaderm over 3 years ago ... The build up for me was slow and I wondered if it would work. With me it started to work before the higher dose but I still had some small patches when I was up to 6x120mg tablets a day.. They cleared and I stayed clear with no fresh spots for 3 years ....

I had to reduce my dose when my lymphosite count dropped and a few  spots reappeared this was about 4 months ago my blood count came up again and I increased to 3 tablets a day and am now virtually clear.
I'm not sure in your case what to suggest ... But if all your bloods are good and liver and kidney function are ok . Then go along with the dermatologist...and increase to 8 x 120mg tablets

The only thing I do know from Caroline on here is that with her version there is no limit to the amount you can take
( I'm sure she will come and explain the differences)

It is a worry when fresh spots start to appear....but you are only 6 months into the treatment and if you can tolerate the side effects. I would say stick with it..... it will continue to work long term and the fact that you are getting some clearance indicates that Fumaderm is doing its magic . Let's hope the new psoriasis patches stop appearing and begin to fade like the rest of your body
Good luck and ask as much as you like
Jim

[jiml]

I found a few related threads for you to look at if you wish it's other experiences of Fumaderm

Fumaderm continued success this is mateychuck's intro

Methotrexate or Fumaderm? this is ccar's intro

Newbie Cheryl75 this is Cheryl' intro

My journey on furmederm starts this is Cheryl's journey

They may be of interest to you

[Caroline]

Hi Kath,

Point 1: I disagree with Jim on the issue of going for 8 x 120 mg tablets.  That is too much with Fumaderm, your derm ought to know that.
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Short intermezzo. I drop in quite immediate and directly give my opinion out of knowledge and just because I am Dutch, we Dutch are like that, don't worry we still can be nice and friendly
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Point 2: The reason why you can not go above 6 tablets is the fact that from that moment on the additives that are in Fumaderm become too toxic for your body. This could finally lead to the point that you might have to stop the treatment and that would be a pity.

Point 3: I myself am not on Fumaderm but on Psorinovo, which is different from Fumaderm in the fact that it does not contain any additives but only DMF.

Point 4: The second difference between the two is that the latter is enteric coated slow release. It passes your stomach first and than will slowly release in your intestines. This reduces the side effects and therefore there is basically no upper limit in the number of tablets. I know people who are using up to 12 tablets for years.

Point 5: The only disadvantage is that Psorinovo only can be ordered from the Netherlands.

There is a lot to read on this forum on both products and on DMF as a whole.
I am very interested in your opinion on my thread on Dimethylfumarates and Psoriasis seen from your knowledge on bio things.

Hope to hear from you soon.

Caroline.

[jiml]

Thanks Caroline I knew the recommended maximum dose was 6 tablets. But unlike you I wasn't sure why, and assumed the dermatologist was acting on new information.
I'm sure as you say it's the additives that restrict the size of dose on Fumaderm. Thanks for putting me right    

[Kato]

Thanks for the responses :-) Sorry its taken me a while to reply...busy weekend!

Feeling pretty ill on the 8 a day regime, but I got used to that from when I went up to 6!

I have a blood test booked in a couple of weeks so at least I'll get an idea of whether the high dose is having any negative effects. I had a chat with my Dermatologist about it becasue the BAD advice was 6 tablets max per day, but in Germany the max is 12!

My Derm also told me that its not licensed here because they have not done the research to determine which of the 4 esters are 'active ingredients' (i.e. provide the clinical benefits). I'm not sure how accurate this is but I do find it interesting, and the fact that it can be prescribed here on the NHS without being licensed!

Caroline - I'll definitely have a look at your post when I get the chance...interesting stuff!

Kath

[jiml]

Thanks for the responses :-) Sorry its taken me a while to reply...busy weekend!

Feeling pretty ill on the 8 a day regime, but I got used to that from when I went up to 6!

I have a blood test booked in a couple of weeks so at least I'll get an idea of whether the high dose is having any negative effects. I had a chat with my Dermatologist about it becasue the BAD advice was 6 tablets max per day, but in Germany the max is 12!

My Derm also told me that its not licensed here because they have not done the research to determine which of the 4 esters are 'active ingredients' (i.e. provide the clinical benefits). I'm not sure how accurate this is but I do find it interesting, and the fact that it can be prescribed here on the NHS without being licensed!

Caroline - I'll definitely have a look at your post when I get the chance...interesting stuff!

Kath  

Thanks for that information it is interesting I shall have to do some more research regarding the maximum dose in Germany. i hope your blood test comes back with good results and the side effects subside. Thanks again, and good luck

[jiml]

Thanks for the responses :-) Sorry its taken me a while to reply...busy weekend!

Feeling pretty ill on the 8 a day regime, but I got used to that from when I went up to 6!

I have a blood test booked in a couple of weeks so at least I'll get an idea of whether the high dose is having any negative effects. I had a chat with my Dermatologist about it becasue the BAD advice was 6 tablets max per day, but in Germany the max is 12!

My Derm also told me that its not licensed here because they have not done the research to determine which of the 4 esters are 'active ingredients' (i.e. provide the clinical benefits). I'm not sure how accurate this is but I do find it interesting, and the fact that it can be prescribed here on the NHS without being licensed!

Caroline - I'll definitely have a look at your post when I get the chance...interesting stuff!

Kath  

Thanks for that information it is interesting I shall have to do some more research regarding the maximum dose in Germany. i hope your blood test comes back with good results and the side effects subside. Thanks again, and good luck

Hi Just had a look and found this

Quote:

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Current German guidelines recommend a gradual increase in FAE dosage to determine optimal efficacy and tolerability for each patient. During the first week of treatment, patients typically receive one tablet daily of a low-strength 'Fumaderm® initial' formulation (30 mg dimethylfumarate; 75 mg monoethylfumarate as Ca, Mg and Zn salts), increasing over the next 8 weeks to a maximum of six tablets daily of full-strength Fumaderm® (120 mg dimethylfumarate; 95 mg monoethylfumarate as Ca, Mg and Zn salts) taken as a divided dose of two tablets three times daily.[74,75] Clinical benefit is typically observed after 4-6 weeks of treatment.[75] Following psoriasis remission, use of a reduced dose for maintenance should be attempted.[75]

This was an extract from this document
NO LINKS ALLOWED

[Caroline]

Thanks for the responses :-) Sorry its taken me a while to reply...busy weekend!

Feeling pretty ill on the 8 a day regime, but I got used to that from when I went up to 6!

I have a blood test booked in a couple of weeks so at least I'll get an idea of whether the high dose is having any negative effects. I had a chat with my Dermatologist about it becasue the BAD advice was 6 tablets max per day, but in Germany the max is 12!

My Derm also told me that its not licensed here because they have not done the research to determine which of the 4 esters are 'active ingredients' (i.e. provide the clinical benefits). I'm not sure how accurate this is but I do find it interesting, and the fact that it can be prescribed here on the NHS without being licensed!

Caroline - I'll definitely have a look at your post when I get the chance...interesting stuff!

Kath  

Hi Kath,

The max dose in Germany is 6 tablets, I am quite sure of that.
Your dermatologist may be mistaken by information on another tablet called Psorinovo. With that one there is no limitation as in that one the monofumarate and the salts are missing.
So please ask him for that product and if possible continue on that one.

It is correct that they did not do the research, but it is even widely known outside of the medical circuit that the active ingredient is dimethylfumarate, so they make a fool of themselves by saying that. There is no sensible reason for any country to redo the reseach of Germany again. It is all EUropean, so why go through the trouble a bit of literature study would be enough.

In the Netherlands it is not the tablet that is licensed but the working ingredient dimethylfumarate is licensed or better, accepted.

Fine that you keep us updated and give us the ability to suggest from our knowledge.

Caroline