Fumaderm - questions.

[Kato]

Hi Angie,

I have just joined this forum too and am a fellow Fumaderm-er

It's great to be able to speak to people on the same treatment as I don't think there are too many of us in the UK!

From my experience to date, the stomach cramps and nausea/sickness do start to subside a while after each time I increased my dose...its just pretty horrible whilst it lasts! Personally I went for 3 months without so much as being able to walk into a coffee shop as the smell of coffee made me sick to my stomach!

Now this has subsided and I'm back on my morning coffee again...lovely :-)

I have found that the more I eat with each dose, the less the stomach side effects. I've just gone up to 8 tablets a day (over the UK max dose) on the advise of my Dermatologist so I'm where you are again now with the side effects!

The best of luck with everything and good to 'meet' you!

Kath

[Angie]

Thank you for the reply,s.

Jiml, the readings were within 3 weeks of each other. Had been on the 6 tabs for four days when bloods taken.  Re reducing the dose I think that is what I may do if things don't start to settle.  May get bloods done next week and that will be a fortnight from last.  Urine sample - I thought I had read somewhere of someone mentioning  they handed one in when they were getting their bloods done - so won't have to bother with that.

As for feeling rubbish, I think it's maybe down to lack of sleep and constantly feeling nauseous . Well let's hope it passes soon  

Kato, good to 'meet' you too.  I'm glad you posted the bit about coffee. I was starting to think my mind was going as I can't bear to smell one of my usual perfumes ( probably one of the stronger one,s ) so I totally get where your coming from!  8 tablets , I have been told the limit is 6 also.  Struggling with 6 , goodness knows how you are managing 8.  I will try and eat more with them, though tonight I'm still trying to force myself to eat a dinner.   You have mentioned you are relatively clear apart from some new patches, may I ask how long it took for actual clear skin, ( well as clear as psoriasis skin gets).

Good luck to you too with your increased dose.

Thanks again

Angie 

[Caroline]

Kath,

Take care. As far as I know you are on a too high dose.
Everywhere the max of Fumaderm is 6, no doctor in the Netherlands will prescribe a higher dose.

I don't want to scare you, but please keep a good eye on yourself !

Caroline

[jiml]

Hi Kath  I have had a look around and the only reference I can find to the German guidelines is this

Quote:

---

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]

Source medscape.com 
NO LINKS ALLOWED

[Caroline]

Hi Kath  I have had a look around and the only reference I can find to the German guidelines is this

Quote:

---

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]

Source medscape.com 
NO LINKS ALLOWED

And it is exactly those "monoethylfumarate as Ca, Mg and Zn salts", that form the trouble. They are completely useless and limit the max dosage.

[Kato]

Angie - it took about three months of treatment before I was almost clear. I still have skin discolouration but I couldn't care less to be honest!

I do have a pic of my legs at the start of treatment and 90 days in which I'm more than happy to share but I'm not sure if there are any rules around this (this is the only forum I've ever been on!) Jim are you able to advise?

I've woken up today with the coffee aroma-induced nausea again but food seems to be helping :-) As much as I'm not glad you have it too with certain smells, its reassuring to know other people are experiencing the same things! Howe did you get on with dinner last night? I think my gastro side effects probably aren't helped by the fact I have also had a pretty severe case of IBS for the last 14 years! The nausea and cramping have definitely lessened with time for me so I hope you can look forward to feeling better soon too!

Re bloods, I had mine done weekly to begin with (and a urine sample every other week), then every 3 weeks and now I'm down to every 6 weeks.

On the good advice of Jim and Caroline I have gone back down to 6 per day for now :-) What would I do without you already!

Good luck with everything

[jiml]

Angie - it took about three months of treatment before I was almost clear. I still have skin discolouration but I couldn't care less to be honest!

I do have a pic of my legs at the start of treatment and 90 days in which I'm more than happy to share but I'm not sure if there are any rules around this (this is the only forum I've ever been on!) Jim are you able to advise?

I've woken up today with the coffee aroma-induced nausea again but food seems to be helping :-) As much as I'm not glad you have it too with certain smells, its reassuring to know other people are experiencing the same things! Howe did you get on with dinner last night? I think my gastro side effects probably aren't helped by the fact I have also had a pretty severe case of IBS for the last 14 years! The nausea and cramping have definitely lessened with time for me so I hope you can look forward to feeling better soon too!

Re bloods, I had mine done weekly to begin with (and a urine sample every other week), then every 3 weeks and now I'm down to every 6 weeks.

On the good advice of Jim and Caroline I have gone back down to 6 per day for now :-) What would I do without you already!

Good luck with everything  

I'm glad you are down to 6 A day it was a worry taking to much.... So glad you came here
I will pm you in a while to explain how to put pictures on ... There's no problem they just need hosting .. Give me an hour or so and I will send you a message

[Angie]

Hi Kath

I had a late dinner and cut back to 5 tabs.  5 again today to let things settle , hopefully.

I've been on these now for about 11 weeks, seeing improvement but no where near clearance. Still getting slight scaling .  I hope I'm just responding a wee bit slower.

Yes I know what you mean about the reassurance of others having the same side effects. Ha

I hope your feeling better going down to the 6 , and be back enjoying your coffee soon.

Take care

Angie  

[Angie]

Hi All

A quick update on my fumaderm journey.

Had been on 6 tabs a while back but could not tolerate the side effects.  Severe cramps, in loo lots, nausea and sickness and dizziness and flushes  Didn't want these to beat me so went down to 5 , no help so went down to 4, much better.  Gave me a couple of weeks with a decent sleep and able to go full days not wrenching!  Stayed on  4 for two weeks then went back up to 5.  That was about 2 1/2 weeks ago and symptoms came back but not as bad.  Think they are tapering off a good bit now and will be planning on going back up to the six next week, all going well.

Skin - arms alot better, legs - not great, some small scaly patches appearing on hands , so am keen to get back to 6 tabs to try and control it better.

Had been losing a bit of weight but now seems to be static.

Will update when back on 6, hopefully with good news as didn't want to update previously when struggling.  (Wouldn't want to put anyone off) Ha

Hope everyone is well.

Cheers

Angie

[Kato]

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