Low energy levels on fumaderm

[Caroline]

I have to go do my nails.

But I will be back with more info for Braye

[jiml]

JIM !!!!!!!

You are on my thread !!!! And also not correct....  

What you are saying is only partly true, and way overrated.
I have been years on a level between 0.5 and 0.7, and I am hardly ever ill nor is my immune system against viruses less than normal, which is well known, at least with the community over here in NL, when you use DMF.

So are you saying someone who has been on Fumaderm for just 7 months and has a lymphocyte count that's dropped to 0.5 is safe leaving any check on bloods for 3 months ??? Despite the manufacturers instructions being clear

Psssst you can post on my thread any time

[Caroline]

JIM !!!!!!!

You are on my thread !!!! And also not correct....  

What you are saying is only partly true, and way overrated.
I have been years on a level between 0.5 and 0.7, and I am hardly ever ill nor is my immune system against viruses less than normal, which is well known, at least with the community over here in NL, when you use DMF.

So are you saying someone who has been on Fumaderm for just 7 months and has a lymphocyte count that's dropped to 0.5 is safe leaving any check on bloods for 3 months ??? Despite the manufacturers instructions being clear

Psssst you can post on my thread any time

Yes
But I will comment later, now busy

[braye lodge]

When your lymphocyte count is very low you are left wide open for opportunistic diseases to attack you, I am not a doctor but have read enough to worry about the way your dermatologist is prepared to wait three months before seeing you or doing any more tests  

The worst case could be PML ..( progressive multi focal leukoencephalopathy) this is caused by the JC virus the virus only causes disease when the immune system is seriously weakened ... There have been a few cases and all caused by lack of proper monitoring and could have been reversed if caught in time ..


Incidentally it would be a good idea to move some of these comments to a separate thread if you don't mind as this ask thread is really a thread to find out about Caroline

Do I just make another thread, sorry if i've done it wrong. Don't want cause trouble.

[Caroline]

JIM !!!!!!!

You are on my thread !!!! And also not correct....  

What you are saying is only partly true, and way overrated.
I have been years on a level between 0.5 and 0.7, and I am hardly ever ill nor is my immune system against viruses less than normal, which is well known, at least with the community over here in NL, when you use DMF.

So are you saying someone who has been on Fumaderm for just 7 months and has a lymphocyte count that's dropped to 0.5 is safe leaving any check on bloods for 3 months ??? Despite the manufacturers instructions being clear

Psssst you can post on my thread any time

My nails are fine again.  and I was teasing you Jim  

Let's elaborate a little on the subject.
1) don't panic.
2) we all know that the start with DMF, any producer made, shows a lymphocyte count that is going down.
3) true, the 0.5 is the low side, I have been shortly on 0.4, but that the count has the ability to bounce back.
4) due to (3) indeed you certainly should not increase, and go for a next check in 3 months.
5) remember that the producer of Fumaderm, being Biog.n, is really panicked on the PML cases that they have with Tecfid...  So they are raising there limits to avoid sueing.
6) I even guess that if you look for an old leaflet, more than two years older, there is no mention of this risk.
7) History and Dutch and German research show that there is no relation between the use of DMF, having a lower lympho count, and being more vulnerable for infections, diseases or viruses. The warning in the leaflet has been made from a theoretical standing point, if lympho's are low you probably will be more vulnerable. But in practice that does not hold for the treatment with DMF, even though that is strange.
8) the real risky level for most people for getting PML is with a level of 0.2 or lower, and only if you carry the JB Cunningham virus with you, unfortunately 90% of the population does.
9) you can increase your lymphocyte level by taking the drug intermittently. So take it during the week and give yourself a rest in the weekend.
10) can't think of a 10th right now.  

[jiml]

When your lymphocyte count is very low you are left wide open for opportunistic diseases to attack you, I am not a doctor but have read enough to worry about the way your dermatologist is prepared to wait three months before seeing you or doing any more tests  

The worst case could be PML ..( progressive multi focal leukoencephalopathy) this is caused by the JC virus the virus only causes disease when the immune system is seriously weakened ... There have been a few cases and all caused by lack of proper monitoring and could have been reversed if caught in time ..


Incidentally it would be a good idea to move some of these comments to a separate thread if you don't mind as this ask thread is really a thread to find out about Caroline

Do I just make another thread, sorry if i've done it wrong. Don't want cause trouble.

No you've not done anything wrong it but your question would be more visible in a thread of its own
I'm sure Caroline doesn't mind ....I was thinking it might help you get other answers elsewhere as only Caroline will disagree with me here

[braye lodge]

JIM !!!!!!!

You are on my thread !!!! And also not correct....  

What you are saying is only partly true, and way overrated.
I have been years on a level between 0.5 and 0.7, and I am hardly ever ill nor is my immune system against viruses less than normal, which is well known, at least with the community over here in NL, when you use DMF.

So are you saying someone who has been on Fumaderm for just 7 months and has a lymphocyte count that's dropped to 0.5 is safe leaving any check on bloods for 3 months ??? Despite the manufacturers instructions being clear

Psssst you can post on my thread any time

My nails are fine again.  and I was teasing you Jim  

Let's elaborate a little on the subject.
1) don't panic.
2) we all know that the start with DMF, any producer made, shows a lymphocyte count that is going down.
3) true, the 0.5 is the low side, I have been shortly on 0.4, but that the count has the ability to bounce back.
4) due to (3) indeed you certainly should not increase, and go for a next check in 3 months.
5) remember that the producer of Fumaderm, being Biog.n, is really panicked on the PML cases that they have with Tecfid...  So they are raising there limits to avoid sueing.
6) I even guess that if you look for an old leaflet, more than two years older, there is no mention of this risk.
7) History and Dutch and German research show that there is no relation between the use of DMF, having a lower lympho count, and being more vulnerable for infections, diseases or viruses. The warning in the leaflet has been made from a theoretical standing point, if lympho's are low you probably will be more vulnerable. But in practice that does not hold for the treatment with DMF, even though that is strange.
8) the real risky level for most people for getting PML is with a level of 0.2 or lower, and only if you carry the JB Cunningham virus with you, unfortunately 90% of the population does.
9) you can increase your lymphocyte level by taking the drug intermittently. So take it during the week and give yourself a rest in the weekend.
10) can't think of a 10th right now.  

Even though i'm only on it 7 months should I still take intermittently?

[braye lodge]

When your lymphocyte count is very low you are left wide open for opportunistic diseases to attack you, I am not a doctor but have read enough to worry about the way your dermatologist is prepared to wait three months before seeing you or doing any more tests  

The worst case could be PML ..( progressive multi focal leukoencephalopathy) this is caused by the JC virus the virus only causes disease when the immune system is seriously weakened ... There have been a few cases and all caused by lack of proper monitoring and could have been reversed if caught in time ..


Incidentally it would be a good idea to move some of these comments to a separate thread if you don't mind as this ask thread is really a thread to find out about Caroline

Do I just make another thread, sorry if i've done it wrong. Don't want cause trouble.

No you've not done anything wrong it but your question would be more visible in a thread of its own
I'm sure Caroline doesn't mind ....I was thinking it might help you get other answers elsewhere as only Caroline will disagree with me here  

[Caroline]

Yes, that would be a good practice Braye.
Two reasons.
It will give your lymphos time to bounce back.
And it will make sure that your body will not get used to much to DMF so that it will not find a way to resist it.

[Caroline]

No you've not done anything wrong it but your question would be more visible in a thread of its own
I'm sure Caroline doesn't mind ....I was thinking it might help you get other answers elsewhere as only Caroline will disagree with me here  

he knows me too good...