My insights on Skilarence

[Caroline]

Hi Mac,

If it starts to work on your face, why stop with the medication. It is a slow burner.
If side effects are ok, and lymphocytes are above the lowest limit, I would stick with it for a while. At least as long as the build up procedure.

That is the approach here in Holland.
Gradually build up until it starts to work, then you have the level phase, stay on that level of medication at least as long als the build up. This will give you insight if it continues to work. If it does, you can lower again after this period until maintenance dose. If it doesn’t you have lost nothing.

As far as I can see now, you might be on the edge, if you stop now you might lose a good medication.
But of course it is finally up to you to decide.

Cheers,
Caroline

[Mac092]

Hi Mac,

If it starts to work on your face, why stop with the medication. It is a slow burner.
If side effects are ok, and lymphocytes are above the lowest limit, I would stick with it for a while. At least as long as the build up procedure.

That is the approach here in Holland.
Gradually build up until it starts to work, then you have the level phase, stay on that level of medication at least as long als the build up. This will give you insight if it continues to work. If it does, you can lower again after this period until maintenance dose. If it doesn’t you have lost nothing.

As far as I can see now, you might be on the edge, if you stop now you might lose a good medication.
But of course it is finally up to you to decide.

Cheers,
Caroline

Hey Caroline, 
I get where you're coming from. I guess I'm expecting similar results to when I started fumaderm. That started showing clear signs of improvement in very little time and it worked for so long. Even when I had one small flare up I upped the dosage and it was gone in a few weeks. 

Just a little desperate to get my life back 
I'm due to see my derm on November 6th, and if it has improved further by then I would definitely prefer to stick with an oral medication than an injection(as I said before I'm not the biggest fan of needles) 

So I will see how it goes, I'm just not feeling very positive towards it right now  

[jiml]

Yes I agree if it's started to work and your past experience with Fumaderm shows that it should work I would be inclined to give it a bit longer, you are fortunate that your body has accepted skilarence without putting you through the side effects. It is of course up to you. But I will keep my fingers crossed for you that you see more improvement in the next couple of weeks so you will want to stick with it

Good luck
Jim

[Fred]

Fred, it seemed as though you had experience with stelera? Can you give me any advice on how quickly it can clear up once you started it? And does the one shot actually keep you clear for the whole 12 weeks or do you notice it creeping back towards the end of that period?

Hello Mac, I found it worked very quickly. within a week or so I was noticing it clearing. After a month the scales had pretty much gone and though you could still see where it was due to the pigment change, it gradually faded to nothing.

Yes it lasted for the 12 weeks, but I had to play around with the weeks and the dose as it stopped helping the psoriatic arthritis. I found the psoriasis would start coming back at around week 10 or even 8 sometimes but that was after I had been on it about 4 years, and as the psoriatic arthritis was getting worse it had a knock on effect and made the psoriasis worse. 

What I can say is that Stelara has been the best ever treatment for psoriasis (for me) but I moved to Cosentyx as I want to treat psoriatic arthritis first and foremost. If I didn't have psoriatic arthritis I would definitely have stayed on Stelara.

*However you must remember that what works for one may not work for another. So it's trial and error till you find what is best for you. And my personal opinion going by what you have just said in reply to Caroline, I would give the Skilarence a bit longer and hold Stelara on the back burner for later when you may need it more.

Good luck.

[Mac092]

Hi Everyone,

So a quick update. Had my appointment with my derm yesterday. He has decided that skilarence is a failure and it will not work going forward. Granted I had seen an improvement on my face/neck, the vast majority of my body was still covered. Sadly it seems our bodies become tolerant of skilarence(fumeric acid esters)

The decision was made to move me onto stelera. All my tests which were done earlier came back clear. In Ireland anyway, we have to wait for a public health nurse to come out to show us how to use it and an appointment has been requested for this so I hope to start stelera in the next week or 2. This is fine anyway as my pharmacy does not stock stelera and I have to wait for it to come in...

All in all, for people reading this thread in the future who are starting on skilarence, I would not take it as all bad news. I've had 4 good years taking fumeric acid esters, with 100% clearance. It is unfortunate that it stopped working for me, but if that happens to anyone else there are other treatment options available. So while this is one chapter of my psoriasis life over, I hope the next will be as successful.

[Bill]

That is the right way to consider things, Mac. Managing your psoriasis is what matters. The means of achieving that is unimportant. Good luck with the Stelara.

Cheers

[Fred]

Yes I agree with Bill. It's all about management, shame it no longer works for you Mac but you had a good run on it in other forms.

Good luck with Stelera it's a good treatment and works quickly too. 

Yes the nurse will show you how it's done, and once you are comfortable they will let you do it yourself. (It's easy by the way)

Don't hesitate to start a new thread in Prescribed Treatments For Psoriasis about your new journey if you wish.

[jiml]

Hi Marco great news you will be starting on Stelara soon and can begin to get clear of psoriasis again

I look forward to hearing how it is working for you and hope you will start a new thread about your experience while on Stelara

I myself have been lucky with my experience of DMF as a drug in the form of Fumaderm and now skilarence it must be around 7 years clear for me now with no signs of it failing me yet

I wish you good luck on Stelara and hope to hear more soon

[Bill]

It must be nearly eight years for you, Jim. I will hit seven at the end of the month. I agree with Caroline that DMF probably could work again for Mac by some regime, but what is the point of mucking around if you could swap the hassle and clear more quickly with a jab every three months? I'd muck about by varying the dosage, but I have a bloody great bag of the stuff with no use other than as a root rot treatment for succulent plants.

Cheers

[Caroline]

Yes Indeed it can stop working in occasional situations.

For many people it just will keep on working. Specifically the slow release version in the Netherlands has a very good history. Skilarence does not have that history yet. Future will tell that.