Fumaderm - questions.

[Caroline]

I have a dermatology appointment tomorrow (Friday) I will ask questions about Psorinovo and see what she has to say about it, and whether it is possible for us in the UK to get it

I will explain to her the differences and see if there's a chance I could swing on to it
(Not that I have bad side effects but I like the idea that if I do have a flare up with psorinovo I can up the dose significantly as it doesn't have the unpleasant useless additives)
I will let you know what she thinks  

Ok Jim, that is a nice action !
As far as I know it can be shipped everywhere by the pharmacist. There are even flyers in all kinds of languages.

I am very curious.

A very well known dermatologist in the Netherlands, dr. Bing Thio, has recently said that because of the possibilities of DMF in various auto immune diseases, there is a possibility that it finally might become the aspirin of the future.

[Caroline]

I have been getting good results by taking larger doses less frequently. I was on 360 mg twice daily, but get a much better effect from a single 800 mg dose taken three times weekly. In the six plus months I have been on this regimen my lymphocyte and total white cell counts have improved. I take DMF in raw form, so I am not sure whether it is possible to do this with tablets.

Cheers,

Bill

You can do this with the tablets also, but they will a slowed down effect.
I think I am gonna retry your approach. I now take them twice a day(3 pcs), I will try to first change again to once a day, and than go skipping a day with an increased dose on the other day.
Only disadvantage for me is that I cannot count my own lympho's.

Caroline

[Caroline]

Hi Jim,

I dont think that you could do it with either Fumaderm or Psorinovo. As both forms delay the release of DMF, the pharmacology would differ. I have found the idea of DMF working via the suppression of the lymphocyte count to be untrue as my disease has been waning with a rising count.

Cheers,

Bill

Agree with you Bill.
The working of DMF is not because of reduction of lymphocytes. That is only a side effect.
In my DMF thread I have written how the doctors that have studied it for 30 years, think how it works.

Caroline

[Caroline]

My take on Angie getting Psorinovo.

#1 It's not available under prescription in the UK, so she will have to pay for it herself and import it.

Indeed it is only available under prescription in the Netherlands. It can easily be ordered. But indeed you have to pay for it yourself.

#2 As she won't be getting treated by the NHS she will also have to pay privately for regular blood tests.

No. That is not really necessary. She can stay on Fumaderm. But instead take the Psorinovo, the derm doesn't even have to know. So the blood tests continue and you can see the changes/differences. There won't be much as the DMF dose is the same, only the Fumaderm additions are missing.

#3 Who will be monitoring her condition, and who will she turn to for advice.

See my answer on #2. There is NO difference....

#4 Is it worth going it alone, and is the cost involved worth it for something that is much the same as Fumaderm.  

Well if it is all about the side effects and Psorinovo would greatly reduce them, then that would make the treatment better to be tolerated.
IF the problems remain, than Angie's body definitely cannot cope with DMF. And there is definitely no possibility to continue the treatment.

Just my opinion.

And just my answer.
I wrote it because of Angie's prevalence for pills and as a possibility to check if it really the DMF.

Caroline

[Fred]

No. That is not really necessary. She can stay on Fumaderm. But instead take the Psorinovo, the derm doesn't even have to know. So the blood tests continue and you can see the changes/differences.

And just my answer.

Nooooooooooooooooooooooooo The NHS is in a bad enough state to start encouraging people to abuse it.  

And that is just my answer from a person who has paid huge amounts into the British tax system over my life, if someone wants to go it alone then fine go it alone but please don't encourage people to abuse the system.  

[Caroline]

No. That is not really necessary. She can stay on Fumaderm. But instead take the Psorinovo, the derm doesn't even have to know. So the blood tests continue and you can see the changes/differences.

And just my answer.

Nooooooooooooooooooooooooo The NHS is in a bad enough state to start encouraging people to abuse it.  

And that is just my answer from a person who has paid huge amounts into the Britishm tax system over my life, if someone wants to go it alone then fine go it alone but please don't encourage people to abuse the system.  

Still Fred if a doctor would give me MTX again, i would not take them and fake the problems. Some things are just not worth it.

Next to that, I think it is a strange system. My doctor (GP) would support blood tests, I am quite sure of that. Maybe we are a bit more flexible? Advanced? Untied to the eternal rules? Grown-up?

[Fred]

No. That is not really necessary. She can stay on Fumaderm. But instead take the Psorinovo, the derm doesn't even have to know. So the blood tests continue and you can see the changes/differences.

And just my answer.

Nooooooooooooooooooooooooo The NHS is in a bad enough state to start encouraging people to abuse it.  

And that is just my answer from a person who has paid huge amounts into the Britishm tax system over my life, if someone wants to go it alone then fine go it alone but please don't encourage people to abuse the system.  

Still Fred if a doctor would give me MTX again, i would not take them and fake the problems. Some things are just not worth it.

I'll stop as I don't want to take Angie's thread off topic with another debate.

[Caroline]

No. That is not really necessary. She can stay on Fumaderm. But instead take the Psorinovo, the derm doesn't even have to know. So the blood tests continue and you can see the changes/differences.

And just my answer.

Nooooooooooooooooooooooooo The NHS is in a bad enough state to start encouraging people to abuse it.  

And that is just my answer from a person who has paid huge amounts into the Britishm tax system over my life, if someone wants to go it alone then fine go it alone but please don't encourage people to abuse the system.  

Still Fred if a doctor would give me MTX again, i would not take them and fake the problems. Some things are just not worth it.

I'll stop as I don't want to take Angie's thread off topic with another debate.

I'll stop too.

[Fred]

No. That is not really necessary. She can stay on Fumaderm. But instead take the Psorinovo, the derm doesn't even have to know. So the blood tests continue and you can see the changes/differences.

And just my answer.

Nooooooooooooooooooooooooo The NHS is in a bad enough state to start encouraging people to abuse it.  

And that is just my answer from a person who has paid huge amounts into the Britishm tax system over my life, if someone wants to go it alone then fine go it alone but please don't encourage people to abuse the system.  

Still Fred if a doctor would give me MTX again, i would not take them and fake the problems. Some things are just not worth it.

I'll stop as I don't want to take Angie's thread off topic with another debate.

I'll stop too.  

[Bill]

It is not hard to count your own white cells and lymphocytes. All you need is a microscope, preferably binocular with at least 200 x magnification and an xy stage, a blood glucose testing lancet, an insulin syringe, a counter, a 1=10 microlitre micropipette, a Neubauer hemacytometer and coverslips, a bottle of vinegar, and either a microscope slide or preferably a teflon coated well. Draw 100 microlitres of vinegar with the insulin syringe and put it on a microscope slide or in a teflon coated well. Set the micropipette to 5 microlitres and remove 5 microlitres of vinegar from the slide or well. Use the lancet on a fingertip then take 5 microlitres of blood with the micropipette. Add the blood to the vinegar in the well or on the slide and mix well by repeatedly drawing and expressing the blood/vinegar mix to and from the micropipette. When the mixture changes from red to brown (this happens when the red cells pop), transfer ~25 microlitres to the hemacytometer (with coverslip in place). Capilliary action will draw the mixture from the edge of the coverslip into the hemocytometer. Put on the microscope stage and start counting the WBCs in the 128 squares. Multiply the result by 25 for a cell count per millilitre estimate. With a bit of practice you can differentiate the lymphocytes. It is a good idea to set up the microscope first, so you dont waste time finding the counting chamber. Broaden your horizons, Caroline!

Jim, would it have been better had I been able to get DMF prescribed here? Yes and no. In hindsight 720 mg per day (2 x 360 mg) depressed my white cell count too much, and 3 x 240 mg would have caused a similar suppression and been less effective against my psoriasis. I would not have had the liberty to play around with the dosage as I have done, and I believe that the raw DMF may have advantages over the tablet form for the way I take it. As it is I am controlling my psoriasis, reducing my psoriatic arthropathy and slowly regaining flexibility and range of movement, all without the fear of a depressed white cell count.

Cheers,

Bill