Skilarence part 2

[Kat]

Quick update...

I'm currently on 3 initial tablets a day and really feeling the intestinal cramps. I can handle them throughout the day but it's the one I always get at around 3am that's really getting me down. 

Does anyone have any tips on how to reduce them? I've tried them with lots of food and water but I still get cramps regardless.

One of the DMF/Fumaderm/Skilarance people would be better to answer as I have no experience on it, but since it's bedtime for most of them, thought I'd answer.

It seems that past responses have ranged from reducing the dosage or toughing it out as the first couple of weeks are the worst and then side effects become rare (From what I remember reading from the gang here!) 

You have your appointment tomorrow, right?  Perhaps ask the doctor about the dosage and see if he can make it more manageable? 

Good luck!

Yes the DMF gang will know more and I'm surprised none have seen your post.

I remember some of them saying yoghurt helps.

That's right! I remember them saying that as well.

[jiml]

Hi sorry I missed this earlier but Kat and Fred are both right try a yogurt before you go to bed as well as one with the tablets at your evening meal the only other thing i'll add is if you can stick with it they will pass after your body gets used to it. If you can drink  more fluid the more the better I think
I've just subscribed to this so in future I'll get a notification when you post
I think the first month is the worst after that it should begin to ease off

[Caroline]

This intestinal cramps are exactly the reasons why over here in the Netherlands 35 years ago a smart doctor together with a pharmacist decided to make a slow release version, which version avoids the intestinal cramps.
Almirall, the producer of Skilarence, has never understood this and still refuses to understand it and refuses to come up with a slow release version despite the fact that 50% of the users in the Netherlands, who try skilarence, go back to Psorinovo. And even while the Dutch association already several times has mentioned this to Almirall. Unfortunately they lack a good set of logical minds.

If you have the possibility to write to Almirall, perhaps you, from another country than the Netherlands, can also give them the rather obvious hint for a slow release version.

The curious thing in the Netherlands is that two very well known doctors have advised Almirall on the making of Skilarence, both doctors knew about the slow release Psorinovo, they even both have been prescribing it, but still they did not advise Almirall to make a slow version. How stupid can you be, even if you are a doctor.

Theoretically spoken, Bill might have an opinion about that, you can better have it in powder form and mix it through your food, as it then is automatically spread into your stomach and intestines. What now happens is that the skilarence pill passes your stomach and falls apart in your intestines in one go, that is why the cramps appear.

And indeed yes, it is said that yoghurt helps as the structure of yoghurt makes a bit of a milk fat layer in your intestines and thus mimics sort of a slow release.

[OneBigItch]

Had my derm appointment today. She suggested trying to space the tablets out more. This is because I seem to get cramps around 6 hours after a tablet. 

She suggested taking the last one around 10pm so if I get cramps I wouldn't have lost as much sleep. She suggested that just a couple of slices of toast would suffice, but I thought you needed to have a good amount of food with them?

I also asked about my lymphocyte count - apparently it's 1.9.

[jiml]

Your Lymphocyte count is great my last one last week was 0.92 so yours is well within the normal range.
I take my morning tablets 3 full strength with toast for breakfast and 2 cups mugs of coffee  and ihave always from day one done the same except weekends when it's a full English  my evening tablets I have with a good meal and a pint of  beer or cider at around 7 pm
But spreading them out could be a good idea and may not cramp you up as much
Are you getting hot flushes as well?

[Caroline]

Had my derm appointment today. She suggested trying to space the tablets out more. This is because I seem to get cramps around 6 hours after a tablet. 

She suggested taking the last one around 10pm so if I get cramps I wouldn't have lost as much sleep. She suggested that just a couple of slices of toast would suffice, but I thought you needed to have a good amount of food with them?

I also asked about my lymphocyte count - apparently it's 1.9.

A few slices of toast? 

Just think logical…
The cramps are there because the pill suddenly releases in your intestines and the DMF comes in contact with your intestine wall. DMF is a very irritating substance.
Now imagine:
- take the pill without anything. What will be the result ? Without hesitation the DMF will contact the intestine wall (in fact your inner skin), so … cramps.
- now take the pill with plenty of food and drink. What will be the result? The pill releases in your intestine but gets intermixed with the food. This will automatically dilute the pill and the effect on your intestines will be more spread over the length of your intestine. This is mimicking a bit the effect of the slow release.

A few slices of toast is somewhere in between. And I totally disagree with your derm, it is probably not sufficient as you already are experiencing. She should once try it for herself.

That is why there is a suggestion of trying yoghurt, as we think that it has a protecting effect on the inner of your intestine.

Your lymphos, if they are really 1.9, are excellent.
Suggestion: ask and write all measurements down in a spreadsheet of your own.

Good question of Jim, about the flushing. Do you get them?

[OneBigItch]

Thanks for all your replies they are extremely helpful. I do try to have as much food as I can with each tablet.

In the morning I have a big bowl of porridge and have one with a glass of water - I still often get mild cramps around 1pm.

Next tablet is at around 1pm and im often ok with no cramps.

Last one is at about 6pm and it's that one that's the killer. Im often up anywhere between 3 or 4 am.

Yes Jim is still get flushes, in fact I had a big flush earlier today at work. I also have been getting burning palms which is annoying. 

I may take my last tablet later at night but with porridge and yogurt to see if that helps. I try to drink as much as I can but I also get very bloated which makes it harder.

My derm mentioned several stats to do with my blood test and said they were all within normal ranges and specifically mentioned the lymphocytes as being 1.9. Apparently I have slightly higher than normal haemoglobin levels though.

[Caroline]

Good to hear OBI..
lets hope the yoghurt trick works for you.

Still my recommendation is, gather all your measurements.
You will be checked about every three months.
It makes sense to see the possible differences over the following measurements. Knowing that they are within range brings you nothing. I also hear that from the doctors secretary every time, but I always ask for the real values on which I can really see what is happening with them. How they move within that range is valuable.

[OneBigItch]

Hi all, I thought I'd give you an update.

There's not a huge amount going on yet. I'm currently on one 120mg a day and although a lot of my psoriasis has cleared, the bad areas on my legs are still very red and inflamed. I had my bloods done a couple of weeks ago and my levels had gone down from 1.9 to 1.3.

My haemoglobin is still high which is knocking some other results out but other than that it's fine.

I'm now just hoping the meds get to work and sorts the rest of my skin out, although I have the worst case of Angular chilitis (cracks in corner of mouth) and can't get rid of the damb thing!

[jiml]

Hi all, I thought I'd give you an update.

There's not a huge amount going on yet. I'm currently on one 120mg a day and although a lot of my psoriasis has cleared, the bad areas on my legs are still very red and inflamed. I had my bloods done a couple of weeks ago and my levels had gone down from 1.9 to 1.3.

My haemoglobin is still high which is knocking some other results out but other than that it's fine.

I'm now just hoping the meds get to work and sorts the rest of my skin out, although I have the worst case of Angular chilitis (cracks in corner of mouth) and can't get rid of the damb thing!

hi and good to see your update and pleased you're still on the skilarence and although on a very low dose it sounds as if it's working a bit. The fact your lymphocyte count is good should let you increase the dose (as normal is between 1 and 3 ) and mine rarely gets to much over 1 I'm currently at 1.15 and I'm on 5 x120mg tablets a day, but am virtually clear and have been for at least 9 years now .
The time to worry about your lymphocyte count is if the level drops below 0.7 then you can reduce the dose until the numbers come back up
I would certainly ask the dermatologist to increase the dose so the drug has a chance to work better for you
Are you still getting the cramps and flushes ?