Skilarence [Duncan's thread]

[Duncan]

Hello Duncan,

I cannot add much to the helpful comments proffered. Keeping well hydrated and taking your medication with a good meal, preferably with plenty of dairy, is the way to go. I found that pre-dosing with N-acetyl l-cysteine reduced the side effects, but as I now take half the DMF dose on its own with good effect I don't bother with anything. I am over six and a half years on the raw chemical with excellent and ongoing results.

I hope things settle for you soon.

Cheers

I wasn't as bad today. Using Imodium took the urge away. Its hard having them with a meal as I started a diet 1 month ago. Weight wont help my skin or my heal damage. I will stay on 2 tablets a week until my body gets used to it. If it doesn't, they arnt for me

[jiml]

I'm glad today was better and I'm sure the side effects will ease off
It doesn't have to be a huge meal Duncan it's just so it has something to get it through the stomach and into the intestines
For me my morning tablets are taken with a couple of slices of toast and a cup of coffee
My evening ones are taken with my evening meal which isn't huge but I do indulge and have a pint of beer air cider with it (not compulsory you could have water ) but it does help if you have plenty of fluid

[Caroline]

Hi Duncan,

Yes that is a known problem with DMF for already 35, years. Almirall made the wrong medicine, they should have made a slow release version.
It is obvious that something that is hurting your intestines, will hurt much less if you spread this over time, so slow or controlled release.  This obviousness, which is incredible logical for any sensible patient, is not part of the thinking world of the experts that make this medication.

In the Netherlands we have, again since 35 years, a slow release version because there was one doctor and one pharmacist who had their brain clear.
This version is still made in a magistrate way. You might think, because of that, that someone makes it by hand so quality is not controlled, but that is not true. It is a controlled produced by a machine. (I have seen it).

It probably will not be covered by your insurance, but you could speak with them. It can be ordered by mail and is twice as cheap as what you have now.
I personally use it with marginal intestine problems.
In the Netherlands it can be prescibed as there is no other medication with this characteristics. While the working substance is still the same. Even the advantage is that max prescription can go highe than 6x120 and signals from patients are that a lot of them need 8x120 to have it started really good.

In order to reduce the intestine pains, they are NOT stomach pains, you should only take  the pills during your largest meal, perhaps by the end of the meal and fill up your dessert yoghurt alike.

Caroline
Member of the DMF gang.
Hi Caroline.
I am in the UK. We don't have insurance. Its free.
I am not sure if slow release is an option. I shall ask 

No Duncan the slow release one Caroline mentions is not available in the UK
So I'm afraid you will have to manage on Skilarence
If the diarrhoea persists you might have to stop or stay on the lower dose till it's no longer a problem

Indeed It is not available in the U.K., but as you can order DMF plain from China, like Bill did, you can also order this from the Netherlands. In fact you can order anything from China.
Did anyone of you ever tried to order medication from abroad.

I know for sure that we in NL, order some medication specifically for cancer directly from the states, as it is not available in NL.
There seems to be no problem doing that.

Think out of the box, not along the guidelines, they are only guidelines. Trying does not hurt you.

[Caroline]

I'm glad today was better and I'm sure the side effects will ease off
It doesn't have to be a huge meal Duncan it's just so it has something to get it through the stomach and into the intestines
For me my morning tablets are taken with a couple of slices of toast and a cup of coffee
My evening ones are taken with my evening meal which isn't huge but I do indulge and have a pint of beer air cider with it (not compulsory you could have water ) but it does help if you have plenty of fluid

I am sorry Jim, but that is not correct.
The stomach is not the problem. Skilarence has a stomach resistant coating, so it will pass the stomach without problems even if you take it only with water.
The problems occur in the intestines, as the DMF is released from the pill. That is where you get the cramps. They are intestinal cramps, not stomach cramps.

Bill is the only one who might get stomach pains, as he is using the raw stuff.

[Duncan]

I'm glad today was better and I'm sure the side effects will ease off
It doesn't have to be a huge meal Duncan it's just so it has something to get it through the stomach and into the intestines
For me my morning tablets are taken with a couple of slices of toast and a cup of coffee
My evening ones are taken with my evening meal which isn't huge but I do indulge and have a pint of beer air cider with it (not compulsory you could have water ) but it does help if you have plenty of fluid

I am sorry Jim, but that is not correct.
The stomach is not the problem. Skilarence has a stomach resistant coating, so it will pass the stomach without problems even if you take it only with water.
The problems occur in the intestines, as the DMF is released from the pill. That is where you get the cramps. They are intestinal cramps, not stomach cramps.

Bill is the only one who might get stomach pains, as he is using the raw stuff.

Its 3 times a day anyway. I don't normally have 3 meals a day.
What does DMF stand for anyway, Excuse my ignorance. I know its Dimethyl Fumarate but that's DF
Is there anything to stop the diarrhoea until the body gets used to it.

[Caroline]

I'm glad today was better and I'm sure the side effects will ease off
It doesn't have to be a huge meal Duncan it's just so it has something to get it through the stomach and into the intestines
For me my morning tablets are taken with a couple of slices of toast and a cup of coffee
My evening ones are taken with my evening meal which isn't huge but I do indulge and have a pint of beer air cider with it (not compulsory you could have water ) but it does help if you have plenty of fluid

I am sorry Jim, but that is not correct.
The stomach is not the problem. Skilarence has a stomach resistant coating, so it will pass the stomach without problems even if you take it only with water.
The problems occur in the intestines, as the DMF is released from the pill. That is where you get the cramps. They are intestinal cramps, not stomach cramps.

Bill is the only one who might get stomach pains, as he is using the raw stuff.

Its 3 times a day anyway. I don't normally have 3 meals a day.
What does DMF stand for anyway, Excuse my ignorance. I know its Dimethyl Fumarate but that's DF
Is there anything to stop the diarrhoea until the body gets used to it.

It is DiMethylFumarate. It is a fumarate-Ester.
In the intestine the DMF is quickly metabolized to MMF (monomethylfumarate) which is the real working substance. Fumarate is an essential substance for the energy cycle (citric-acid-cycle) of the body. Adding DMF will enhance this cycle.

Three times a day?
I have my pills once a day all together (but I have the slow release version). When I eat normally, I have no problems. When I eat fat foods and e.g. spicy foods, the chance of a bit of diarrhoea enhances.
Best thing is to skip a day to stop the diarrhoea.
And than restart again after a day. E.g. Bill takes his dose twice a week.

[Duncan]

I'm glad today was better and I'm sure the side effects will ease off
It doesn't have to be a huge meal Duncan it's just so it has something to get it through the stomach and into the intestines
For me my morning tablets are taken with a couple of slices of toast and a cup of coffee
My evening ones are taken with my evening meal which isn't huge but I do indulge and have a pint of beer air cider with it (not compulsory you could have water ) but it does help if you have plenty of fluid

I am sorry Jim, but that is not correct.
The stomach is not the problem. Skilarence has a stomach resistant coating, so it will pass the stomach without problems even if you take it only with water.
The problems occur in the intestines, as the DMF is released from the pill. That is where you get the cramps. They are intestinal cramps, not stomach cramps.

Bill is the only one who might get stomach pains, as he is using the raw stuff.

Its 3 times a day anyway. I don't normally have 3 meals a day.
What does DMF stand for anyway, Excuse my ignorance. I know its Dimethyl Fumarate but that's DF
Is there anything to stop the diarrhoea until the body gets used to it.

It is DiMethylFumarate. It is a fumarate-Ester.
In the intestine the DMF is quickly metabolized to MMF (monomethylfumarate) which is the real working substance. Fumarate is an essential substance for the energy cycle (citric-acid-cycle) of the body. Adding DMF will enhance this cycle.

Three times a day? 
I have my pills once a day all together  (but I have the slow release version). When I eat normally, I have no problems. When I eat fat foods and e.g. spicy foods, the chance of a bit of diarrhoea enhances.
Best thing is to skip a day to stop the diarrhoea.
And than restart again after a day. E.g. Bill takes his dose twice a week.

Once a day would be way easier. I could take them with a main meal.
Recommended final dosage is, 2x120mg morning, midday then evening. 720mg per day

[jiml]

It's up to you Duncan but I have never taken them as a single dose, it might be ok but I personally wouldn't do it that way
I myself am on five a day I take three with breakfast and two at night
I would be comfortable taking three in the morning and three at night which I did when on six a day

[Duncan]

Looks like I will be stopping using them.
Never had stomach pain like it in my life.
Couldn't get off the toilet, followed my stomach pain. Had the pain on 2 evenings before but only lasted 15minutes or so. No where near as bad. On a scale of 1 to 10. 10 being not able to take any more pain. I was on a 9. Had burst appendix and it was about the same. I ran a hot bath and laid in it belly down. Instant relief. I now feel like I was hit my Mike Tyson 
Not taking any more tablets. Ill phone hospital and see what they say

[jiml]

Looks like I will be stopping using them.
Never had stomach pain like it in my life.
Couldn't get off the toilet, followed my stomach pain. Had the pain on 2 evenings before but only lasted 15minutes or so. No where near as bad. On a scale of 1 to 10. 10 being not able to take any more pain. I was on a 9. Had burst appendix and it was about the same. I ran a hot bath and laid in it belly down. Instant relief. I now feel like I was hit my Mike Tyson 
Not taking any more tablets. Ill phone hospital and see what they say

Wise to stop if they are giving you such violent pains ....I know with me they were fairly bad doubling me over with pain but it was always short lived with me and as it was not a lasting pain I was able to stick with it
But if you have diarrhoea emptying you I guess there's little protection in the intestines when the tablets get through .
I hope you can sort something with the dermatologist and maybe find something else that works or they may have a strategy to deal with your symptoms ...whatever you /they decide I would like to hear how you get on
Good luck