Mon-01-11-2021, 16:43 PM
(Sun-31-10-2021, 19:32 PM)Caroline Wrote:(Sun-31-10-2021, 19:16 PM)Kerry181175 Wrote:(Sun-31-10-2021, 18:56 PM)Caroline Wrote:(Sun-31-10-2021, 18:49 PM)Kerry181175 Wrote:(Sun-31-10-2021, 18:25 PM)Caroline Wrote:(Sun-31-10-2021, 16:39 PM)Kerry181175 Wrote: I have been taking Skilarence for well over a year and with some success. It has never fully disappeared but has certainly helped. Recently my skin has had a bad flare up and I’m wondering if Skilarence has stopped working? Is this a thing? Can it stop working after a time? If yes then what might be my new options?
I am from the DMF gang.
It is unlikely that Skilarence has stopped working. It is more logical that you are experiencing a serious flare up that instabilizes the treatment.
DMF is not like biologicals, where you can build up antibodies, indeed it can be that it stops working, but as I said, it is unlikely. It may be that for a short period you may need some more, Jims also knows about that.
What is your current dose?
How is the state of your lymphocites and eosinofilen? Those two are very important in measuring how the treatment works.
Do you still get the flushes some times?
Like to hear from you
Cheers,
Caroline.
im on the full dose of 6 tablets per day and yes get the occasional hot flush. My white cells were very low at my last blood test and I have come down with this bad cold that I just can’t shift. Gutted.
What do you mean by very low ? If you are below 0.5 , then you certainly are too low, and then you should reduce the dose.
What do you mean by saying: “ I have come down with this bad cold that I just can’t shift. Gutted. “, in my idea that may be common English, but it probably is a way of expressing oneself and I, as a foreigner, cannot understand the real meaning, only can guess.. but still don’t know what to guess.
The full dose does not exist with DMF in the form of Skilarence, there is no problem going higher. The 6 tablets are a historical flaw derived from Fumaderm, which indeed had an upper level of six because it was mixed with mono ethyl Fumarate, which gave this limitation.
Skilarence is only DMF, so there is no problem in raising, but…. If your lymphocytes are really too low, you must not increase. The makers of Skilarence did no research on the maximum dose, they just lazily choose 6 tablets.
From Psorinovo, which is alike Skilarence and already exists for 35 years, but has a slow release , we know that we even could go to 12 tablets or higher.
Claire,can I just say that I’m no expert in all the medical jargon concerning my psoriasis. I am a long term sufferer hoping for some guidance and support. I’m a very private person and it takes a lot for me to open up and discuss certain issues. My psoriasis being one of them. My information is only based on the information my dermatologist gives me. I feel like your tone is very direct and you have put me under the microscope and made me feel extremely uncomfortable. Hope you understand my English. Sorry ?
Oh… I am very sorry, that you feel that way. I am not intending to be that way, but I am Dutch and one of our (bad) habits is that we can be very direct in our manner of speaking. We are not so careful in expressing ourself like the English can be. Added to that is that I write in a language (English) that is not my native language. So that even might be an additional point in my language as I only can make simple sentences. And if it comes to expressions, it is getting more difficult for me to understand them.
I fully understand that you can be feeling uncomfortable, which I am very sorry for. I also understand that it it difficult for you to open up about your psoriasis. But remember, we all are sufferers, we all are the ones that understand about these feelings as we have them ourselves in more or lesser ways.
There is a difference indeed in knowledge that you get from your dermatologist and the information and knowledge that I have gathered specifically about DMF. I have been speaking personally with the doctors over here that introduced DMF in the Netherlands about 35 to 40 years ago. The steps they made and the results of them treating hundreds of people with psoriasis with this medication. So that was why I was asking about medical details. The details that are important when you use DMF.
If you go the start page of the board, click “Forum”, then scroll down until you see the bottom bar, where it says “Forum team” and click that… then you can see that in advance I more or less apologise for my directness.
Caroline
I’m sorry for being over sensitive but felt overwhelmed with the direct questions. I really would appreciate your invaluable knowledge as I am always learning. What does DMF mean?