(Wed-13-05-2015, 22:11 PM)Angie Wrote: Jim - just 5 months, (21 weeks ) I've been on them

Angie

Oops seemed longer thanks I will edit my post

(Wed-13-05-2015, 21:32 PM)Angie Wrote: Hi


Caroline - wouldn't know where to start to get psorinovo, and when I have asked hospital in the past they don't know what I am talking about. Had bloods done again today to check the lymphos , all other bloods fine.
I will continue on the 3 a day and keep an eye on them until I return to derm in 4 weeks. Thanks for reply.

I will certainly start a new thread when I get them.  Thanks

Angie  

Angie,
Psorinovo can only be ordered from the Netherlands, at one specific Pharmacist. If you would want it I can give you the address, as it would be a good experiment with the same drug. But as you are going to something else already it makes no sense probably.
Strange but logical they have never heard of it. Hospitals don't know so much. It is very important to find out things yourself, there is so much more. And now we have internet, it all is much easier also.

If on the internet you search for Psorinovo, there is no doubt you will find a series of hits in your first search, it is dead-easy.

Good luck in your next steps, we would love to hear from you how you are doing.

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  

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

(Thu-14-05-2015, 09:49 AM)Bill Wrote: 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

I'm thinking it might be possible with Caroline's psorinovo but don't think it would work with Fumaderm because of the additives in my opinion

Awwww Angie

Have a BIG bear hug lassie



One for you Angie.............keep smiling

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

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.

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

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

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

Just my opinion.

Good points, Fred. I would never have gone diy had DMF been available here. Much better to be professionally managed within the system. Nonetheless, in my case I do not think that taking 240 mg three times daily was particularly safe or effective.

Cheers,

Bill

(Thu-14-05-2015, 12:58 PM)Bill Wrote: 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

That's a very good observation and well worth remembering

Re your other post possibly one day world governments will wake up and see the benefits of many drugs and approve them worldwide .... It's farcical that each drug has to go through the same procedures in most countries to get approval.
If it were accepted that one countries findings were that the drug was safe was enough ...then for other countries to read the results of trials and accept the drug or if in doubt run trials again.
But with something as basic as psorinovo and Fumaderm why it can't be readily available to most developed countries I don't know
It would make your life easier, and possibly safer Bill