[split] Dimethylfumarates and Psoriasis

[jiml]

Kat,
You are completely right.
If you read my history, it is somewhere on the forum in the myriads of posts I put in here, then you will find that I didn't go to a dermatologist, I went to a rheumatologist, this because my skin-psoriasis was not so heavy but I suddenly got pain in my feet and fingers.
In short I ended up with a belgian rheumatologist who told me that I had PsA, and that there were 2 possibilities, either it was controllable or I would end up in a wheelchair. How subtle one can be .

I went for a second opinion to the Amsterdam VU (university hospital) which he recommended as they were ahead on biologicals.
Over there a handsome doctor (some of them are really walked out of a book ..... ) told me that I should use MTX.
I did, but in a few weeks I got back to him to tell him that it was terrible, but he insisted. Stubborn as I am I did not follow his advice and stopped the medication.
By accident I heard of another doctor, and internist (don't know the english word) but a doctor that looks into the internal person. I went to him, an old not too handsome doctor and he directed me to DMF.
After a number of weeks it began to work, and now I am quite PsA free, not completely but very livable.

So.... for the conclusion, psoriasis and the treatment of psoriasis, do not belong in the field of dermatologists, but in the field of internists and rheumatologists. It is on a completely wrong location.

BUT.... whatever we can say, we still can see that the advanced dermatologists, the ones that are open to new treatments, do really go into the direction of Biologicals and DMF, although it is not their terrain.
Even one of the best dermatologists in the Netherlands, dr. Bing Thio, first tries all kinds of other dermatologist things, before he, on ones insistence prescribes bio's or DMF. I don't understand this guy, he can be world-famous prescribing DMF in the first line.

Now my situation is funny. I get the DMF prescription of a dermatologist, who has psoriasis himself.... and I am under control of my GP, so basically myself.

How weird real life can be.

Caroline

p.s. never forgot the handsome doctor though, but now I know he was an idiot and closed imaginative type of docter. Stay away of those guys.

Beware of cute doctors! Actually I have a couple of cute doctors, but luckily they are quite good. My regular doctor is an internist. He's my go to person and helps me decide when things are working and when things are not. I did see a rheumatologist, but he was only interested in whether I had psoriatic arthritis (which he said I do not). So he told me to check back if I experienced any problems and come back in a year as x% of people with psoriasis develop psoriatic arthritis so he thinks it's good to check it out every year.

I'm happy (sorta) with the dermatologist I have. He said he likes to start at the low end of treatment and work his way up from there. He started with topicals, then added the acitetrin and light therapy and next would be the bios. Right now it feels like we are still treating the skin but it sounded good that he wanted to do the least amount possible to treat it and build up from there.....plus he said the further we go up in the treatment, the greater the expense to me. Of course if it doesn't work and I end up there anyway, it will have been a waste of time and money but I figure he knows better than me (although I know that's not always true, I just know so little that I have to hope he's taking the right path.) If I haven't noticed a huge improvement by December when I go back to my regular doc (the internist) then I will be discussing with him if I need to see someone other than my current dermatologist.

Here in the UK on the National Health Sevice you don't get a choice of dermatologists it's just a lottery....
I have been very luck really as mine for the last Fifteen years or so, has always kept me in the picture and although I was on topicals for years i think I got my break because I used to be a guinea pig at the medical school for trainee doctors and went regularly for them to prod me and talk about psoriasis to them and explain the psychological effect it has on people. I got to meet a lot of dermatologists that way... Then one day in clinic I was seen by a new registrar who was a few years earlier a trainee I had talked too. He remembered me and we discussed treatments .he chatted with the consultant and that is when I was offered acetretin or Fumaderm . The rest is history
Over here if you want to see someone else it would involve going private and paying for the treatment ..... Which would probably be the same as you would get on the NHS without paying
None of my dermatologists are cute men thank goodness

[Kat]

Most health plans here you can select your doctors, either by total free will or from a participating doctor on a list depending on your insurance. The problem is (as you will see in some posts from Americans) there is usually a wait list to get in to see a specialist so at some times it can take months to get in to particular doctors. Good on the one hand (as you have some say on who you see) and bad on the other (as there can be a long wait).

[jiml]

Most health plans here you can select your doctors, either by total free will or from a participating doctor on a list depending on your insurance. The problem is (as you will see in some posts from Americans) there is usually a wait list to get in to see a specialist so at some times it can take months to get in to particular doctors. Good on the one hand (as you have some say on who you see) and bad on the other (as there can be a long wait).

I will be honest and say every dermatologist I have seen over here has been supportive and I never felt I should look anywhere else for answers and until recently ( I call 15- 20 years recent) they really didn't seem to have much to offer apart from potions and lotions and UV treatment which did a reasonable job for most of my life. But really never clear enough to feel comfortable in a swimming pool
That all changed and my self confidence grew on Fumaderm I wish I had got it when I was younger but it has only recently been prescribed here, and for that I am very grateful
Jim

[Kat]

Most health plans here you can select your doctors, either by total free will or from a participating doctor on a list depending on your insurance. The problem is (as you will see in some posts from Americans) there is usually a wait list to get in to see a specialist so at some times it can take months to get in to particular doctors. Good on the one hand (as you have some say on who you see) and bad on the other (as there can be a long wait).

I will be honest and say every dermatologist I have seen over here has been supportive and I never felt I should look anywhere else for answers and until recently ( I call 15- 20 years recent) they really didn't seem to have much to offer apart from potions and lotions and UV treatment which did a reasonable job for most of my life. But really never clear enough to feel comfortable in a swimming pool
That all changed and my self confidence grew on Fumaderm I wish I had got it when I was younger but it has only recently been prescribed here, and for that I am very grateful
Jim

I actually didn't choose my dermatologist, my regular doc did. I had only been to one other dermatologist in my life, but he has passed away so I had no preference. I have no complaints with my derm, but it's early yet lol.

[jiml]

Most health plans here you can select your doctors, either by total free will or from a participating doctor on a list depending on your insurance. The problem is (as you will see in some posts from Americans) there is usually a wait list to get in to see a specialist so at some times it can take months to get in to particular doctors. Good on the one hand (as you have some say on who you see) and bad on the other (as there can be a long wait).

I will be honest and say every dermatologist I have seen over here has been supportive and I never felt I should look anywhere else for answers and until recently ( I call 15- 20 years recent) they really didn't seem to have much to offer apart from potions and lotions and UV treatment which did a reasonable job for most of my life. But really never clear enough to feel comfortable in a swimming pool
That all changed and my self confidence grew on Fumaderm I wish I had got it when I was younger but it has only recently been prescribed here, and for that I am very grateful
Jim

I actually didn't choose my dermatologist, my regular doc did. I had only been to one other dermatologist in my life, but he has passed away so I had no preference. I have no complaints with my derm, but it's early yet lol.

As you say early days yet have confidence I'm sure that will help

[Kat]

Most health plans here you can select your doctors, either by total free will or from a participating doctor on a list depending on your insurance. The problem is (as you will see in some posts from Americans) there is usually a wait list to get in to see a specialist so at some times it can take months to get in to particular doctors. Good on the one hand (as you have some say on who you see) and bad on the other (as there can be a long wait).

I will be honest and say every dermatologist I have seen over here has been supportive and I never felt I should look anywhere else for answers and until recently ( I call 15- 20 years recent) they really didn't seem to have much to offer apart from potions and lotions and UV treatment which did a reasonable job for most of my life. But really never clear enough to feel comfortable in a swimming pool
That all changed and my self confidence grew on Fumaderm I wish I had got it when I was younger but it has only recently been prescribed here, and for that I am very grateful
Jim

I actually didn't choose my dermatologist, my regular doc did. I had only been to one other dermatologist in my life, but he has passed away so I had no preference. I have no complaints with my derm, but it's early yet lol.

As you say early days yet have confidence I'm sure that will help

Well, not to get off topic, I am very interested in Dimethylfumarates and other treatments that are working for club members. I know a lot of them are not available in the US and still hoping my current treatment works out but it's good to stay informed.

[jiml]

Most health plans here you can select your doctors, either by total free will or from a participating doctor on a list depending on your insurance. The problem is (as you will see in some posts from Americans) there is usually a wait list to get in to see a specialist so at some times it can take months to get in to particular doctors. Good on the one hand (as you have some say on who you see) and bad on the other (as there can be a long wait).

I will be honest and say every dermatologist I have seen over here has been supportive and I never felt I should look anywhere else for answers and until recently ( I call 15- 20 years recent) they really didn't seem to have much to offer apart from potions and lotions and UV treatment which did a reasonable job for most of my life. But really never clear enough to feel comfortable in a swimming pool
That all changed and my self confidence grew on Fumaderm I wish I had got it when I was younger but it has only recently been prescribed here, and for that I am very grateful
Jim

I actually didn't choose my dermatologist, my regular doc did. I had only been to one other dermatologist in my life, but he has passed away so I had no preference. I have no complaints with my derm, but it's early yet lol.

As you say early days yet have confidence I'm sure that will help

Well, not to get off topic, I am very interested in Dimethylfumarates and other treatments that are working for club members. I know a lot of them are not available in the US and still hoping my current treatment works out but it's good to stay informed.

There is an American on here who has Fumaderm imported to America I can't remember who it was I will,look later he says it's a pain all the paperwork in seem to remember, perhaps some one else may remember who it was

[Fred]

I would be grateful if you could keep this thread On Topic as it is an important thread and the latest posts could end up confusing readers.

Remember the Fumaderm thread? it took me ages to shuffle it about and then I had to lock it.

So just to remind everyone this thread is about Dimethylfumarates and Psoriasis.

You know I don't want to stop you all sharing info, but it helps others to keep on topic.

Thank you.

Fred.

[LadyBug]

Hello everyone! I am new. I have been reading your posts for some time.
I am 23 years old, female. I have experienced many different treatements during last 8 years, creams, ointments, lamps, then youngest bilogical treatment in Poland. Nothing helped. (Well, Humira solved all problems after 1st injection, Psoriasis score went down from around 60 to 0... however now I can only pay it in full by myself, which is not an option nowadays). After doing routine research through the Internet I found Psorinovo info. Ordered.

Now it is the topic I would like to share my experiences, as well as reading yours. I am on "small" dosis now, 2nd week - 2 pills 30mg / day... No side effects, as well as no effects (I hope - YET!)

I am pretty surprised theres almost no info about Psorinovo, its almost suspicious, well...
I purchased Psorex before, but found out it was more a scam than any help.

Starting my new try!
best for all!
Joana

[Bill]

Hi Joana,

The side effects can be a bit tough as you increase the dosage, but if you can stick with the drug they tend to abate greatly over a few months. I have found that taking the drug with a meal ameliorates the side effects as well.

My regime is a little different from Jim and Caroline's, but we all have had great results.

All the best.

Bill