Is psorinovo available in the UK?

[Caroline]

Caroline - What would I need to do to see a dermatologist in the Netherlands and get treated?  Would I need particular health insurance?  Is Psorinovo expensive without insurance?

Oops, that is a difficult question. I would not know how this is done for foreigners.
But if i were to be creative, I would check out the psoriasistherapie dot nl website. Go to Artsen en down below to "Lijst met Dermatologen", there are addresses of institutes and dermatologists. Just call them and tell your problem and ideas.  (you also can contact the guys on the website, but I don't know if they can help you more than yourself with some logical thinking).
I don't have a clue on insurance, I think you would need an insurance that is perhaps wider and covers treatment abroad or Europe wide. But I wouldn't know if that is possible seen from your point of view.

I normally order 600 tablets of 120mg. I think that is about 350 euro's, I am not completely sure as I do not see the declaration the drugstore sends to the insurance.




This is a link to an interesting, though old fashioned/outdated guideline, https://www.huidziekten.nl/richtlijnen/fumaarzuur.pdf. It is in english and dated 1999.


The interesting thing is that is says:

Fumaric acid ester (FAE) therapy has proved to be safe and effective in patients with severe psoriasis vulgaris.

A to the bottom stupid remark. Because.... if it is safe and effective, why limit it to severe psoriasis vulgaris, while already is known that it helps against all forms of psoriasis and PsA.  There is totally no reason for it.

At this location https://www.huidziekten.nl/systemischetherapie/fumaarzuur.htm there is an article on how it works, unfortunately for you in dutch.
This sentence says:

Quote:

---

Fumaarzuur is opgenomen in de Nederlandse Richtlijn Psoriasis 2011 als reguliere behandeling voor psoriasis en in Engelse richtlijnen. In de Nederlandse richtlijn staat dat fumaraten zijn te overwegen als eerste keus systemische monotherapie bij matige tot ernstig plaque type psoriasis.

Fumaric acid is in the dutch guidelines psoriasis treatments as a regular treatment. In this dutch guideline it says that it should be considered to use fumarates as first choice systemic mono therapy with average to severe psoriasis (plaque, but it works for all).

So it seems that the Dutch are way ahead on the British, putting it as a first choice in a guideline,  although also over here we as patients have to slap our dermatologists around their ears with this guideline, because the poor guys and girls just don't do their homework.

I thought I should give a little background about myself.  I'm 39 and have always ate healthily and exercised regularly then last October I had a flare up of Guttate Psoriasis, first time.  No one else in my family has it so it's not hereditary. I did have some insect bites from my holiday weeks previous which did not seem to get better, also I had a slight sore throat but I don't think it was a strep throat infection.  My derm thinks those were my triggers.  I've been getting UVB treatment and have 8 sessions left and then it may be onto Acetretin and no I'm here.  I've cut out nightshades, gluten and processed sugar as much as I can.  I take high dose vitamin D3/K2, Magnesium, Zinc and Selenium and fish oils.  I've been jucing and incorporate a couple of glasses of geen juice a day.  But generally I've always ate healthily and cooked most of meals, processed meals now and then.  I kind of feel really angry that it's happened to me even though I've kept myself really fit and healthy all these years, I've also stopped drinking not that I drank much before last October anyways and have never smoked ever.  Just sheer bad luck I guess like the rest of us.

Looks like you are quite healthy. Thanks for your explanation. That is always welcome.
I recognize your frustration, myself I am a sportive type. I did lots of running, badminton, swimming, dancing and so on. The running and badminton I had to give up after getting PsA, I was very annoyed by that. Luckily my sister introduced me to spinning, so at least I have something to get really sweaty and tired on.

[Kat]

Kat - What side effects do you have from Acetretin?  Did you have a flare up at the start of the regime?

I didn't have any major side effects. After it was mentioned here from someone else about possible hair thinning, I do think I may have lost a little more hair in my brush but honestly I couldn't say for sure that the Acitretin caused it (I may have just been noticing it more) . My derm put me on light therapy and Acitretin at the same time (so I don't know which to credit most with my clearing.) The derm reduced my Acitretin to 3x week (25 mg tablets and he reduced it because I asked if we could try reducing it) and light therapy to once per week for maintenance. The light therapy continues because it is the winter months and I can increase it back to more with no problems. It did take me awhile to clear, I think about 2-3 months if I remember correctly. I also take vitamin D supplements.

No, I did not have any flare ups when starting Acitretin, I stayed about the same until it started to clear, but I did not get worse after starting it.

[Fred]

 

So should I risk it or see if my guttate psoriasis clears by itself after the UVB if my legs haven't cleared by then? I've read that guttate psoriasis will clear up on it own eventually.

Like Jim said that has to be your choice, yes guttate can clear Guttate Psoriasis also known as Eruptive / Raindrop Psoriasis / Paintbrush Psoriasis

Quyeno, it's up to you but I wouldn't get a bee in your bonnet about Psorinovo. If you go that way it's going to cost you a lot of money, and may not give you any better results than what you are being prescribed in the UK. Like Kat said "We are not all the same so what is best for one person is not necessarily the best for another."

We may not like the way our health system works and when we read success stories from someone in another country it makes us think, but my opinion is stick with your system and follow their protocol. Acitretin may work for you as may Methotrexate, as may Fumaderm or the Bio treatments. And the sooner you go through the protocol the sooner you will find something that works, go it alone now and you will probably end up going back to the start with the NHS.

You will read on here that I condemn and hate Methotrexate, but I'm a huge fan of the Bio treatments. But that's doesn't mean I am right, it's just what I think is right for me.  

As you will see we have a good mix of people all sharing information, and although we get on very well with each other we may not always agree on the best approach.

Oh and I certainly would bother with the diet thing that'll ever work.  

[Caroline]

Fred,

I described the differences between fumaderm and Psorinovo.
Logically, due to its composition, the latter should be the better one.
It is up to Q to decide.

I also described that in the Netherlands after long time, DMF is promoted to a first choice product. That makes other products later.

I don't know anything about acetrecitin, so I don't comment on that.

I think biologicals may be great, but expensive and second line, after everything else fails.

I know methotrexate and for me it is an absolute no go.


So Quyeno, there is a difficult choice to make.