My Fumaderm journey is over

[Caroline]

Cases like that one are outliers, but it still makes you cautious. For Phil, his Lymphocyte count remained low on 120 mg a day after 12 years of treatment. Is a low lymphocyte count the main reason for DMF treatment being discontinued? I feel that with a different approach the therapeutic value of DMF would be much greater.

I can understand that Bill. Of course one becomes cautious.... but.... if you realize yourself that MTX caused hundreds of PML cases, what should you think when MTX is prescribed for you?

There are other reasons to discontinue the DMF treatment. E.g. the kidney measurements, like creatinine, are also a fact to be considered. Search on google for "Nephrotoxicity of Fumaric Acid Monoethylester" and you will see that MonoEthylFumarate is the reason for that. MMF is in Phil's pills .
For instance Jim is very aware of that.
It is the main disadvantage of Fumaderm and having MMF into it makes no sense in the long run. But I indeed doubt if Biogen is gonna change it.

[jiml]

Indeed lymphocyte count is an important factor as are liver and kidney function tests in deciding whether to continue with treatment and Phils dermatologist at Guys hospital will not have taken the decision lightly. Or for any other reason than it was harmful to his system and far to risky to continue.
Sometimes we have to accept that although a good treatment. It can have the potential to contribute by lowering our immunity, to irreversible damage.
If any of these signs are seen then the right course of action is to stop the treatment.

Doctors can't tinker with things like irregular dosing. That could lead to serious consequences for the doctor if things did go wrong

[Bill]

Hi Caroline, I don't doubt that DMF is much safer than MTX, but there are risks with any medication. My caution with the drug is not because I think it rubbish. I think it the best treatment available, but I want to stay on it for a long time. The big dose I take currently lasts about four days, and with accessory medication I can eek this out to seven. I am due for another blood test and if this turns out well I will go back to twice weekly dosing again as this offers a superior management of my illness. As with many long term meds, the battle is often one of having to balance efficacy and toxicity at increasing doses. Phil was on the minimum dose and still had a dangerous lymphopenia.