Hello from Jayniepops

[jiml]

If you have been on acetrtin for 8 or 9 months I think it should have worked by now or at least show promising signs
I would ask about the tablets I'm on they are very good and when they work you go into a low maintenance dose with few side effects after this I will post a couple of links to Fumaderm threads
Fred will point you at biological drugs which is another great alternative . But I think it's time to give up on acetretin

[Jayniepops]

Hey Jim


the acitretin is not working - having been on it now for a year - its not happening even though the dose is up to 40mg .


Consultant is recommending Adalimumab but has left me on Acitretin til I see him again in 2 months while I gather some info and talk to others (on here) that may have had experiences on this - He also asked me to check out Ustekinumab as this would be the next step.

I am only unsure as I HATED Methotrexate and as an immunosuppressant I felt ill alot if the time on Methotrexate and dont really want to feel constantly ill again.


I was wondering if anyone might have some advice or info they may like to share with me..

Hi to Kat and troll - (sorry still a newbie) not sure how to forum just yet - although am getting there (I hope) lol
xxxxx

[jiml]

I'll start again I just wrote a lot on here about you being offered Stelara and Humira both are very goog and you should be pleased with the speed that they can work for you I will give a link to the biologicals page where you can view them all Biological Treatments For Psoriasis
Plus you will get some great feedback from users so read this link and then come back tomorrow when im sure there will be some reassuring posts

[Caroline]

Hi Jaynie,

I agree with Jim.
Seen from the perspective that acetrecitin is not working and methotrexate also not, you have to move on and stop with these two. You are feeling ill and that is not a good sign.
There are two options now, as Jim says, the MAB (monoclonal anti bodies) direction, they specifically inhibit a relevant and small portion of your immune system. Only the part and that is relevant for psoriasis.
The other direction is the direction of the dimethylfumarates. Jim himself is on them, he uses Fumaderm.

Myself, if I would be you, think that it might be good to take the DMF-step in between going to the MAB's. Reasons are that the success rate of DMF is high, 70% chance that it works, it is cheap compared to the MAB's, it is quite harmless and has side effects that can be dealt with.
Going that route would mean that you still have the MAB's as a backup treatment.

My two cents in your difficult descision.
Anyway I think that almost everyone on the forum will be happy that you are off methotrexate.

Caroline

[Kat]

Hi Jaynie, I hope you find something that does work for you soon. Since I've been on light therapy since starting Acitretin, I'm not sure how much to credit either one of them with my results. I don't know if I had only done light therapy if I would still be where I am, or if only the Acitretin. One thing I do know is that it's nice to know there are options available if current treatments aren't working, it's just finding out which one is best for you. Best wishes to you!

[Fred]

Hey Jim


the acitretin is not working - having been on it now for a year - its not happening even though the dose is up to 40mg .


Consultant is recommending Adalimumab but has left me on Acitretin til I see him again in 2 months while I gather some info and talk to others (on here) that may have had experiences on this  - He also asked me to check out Ustekinumab as this would be the next step.

I am only unsure as I HATED Methotrexate and as an immunosuppressant  I felt ill alot if the time on Methotrexate and dont really want to feel constantly ill again.


I was wondering if anyone might have some advice or info they may like to share with me..

Hi to Kat and troll - (sorry still a newbie) not sure how to forum just yet - although am getting there (I hope) lol
xxxxx

Hello Jayne, sorry I didn't notice this properly until Jim pointed me here.

Tip for the day to you and any other member, never hesitate to start a new thread with questions. A new thread will probably get notice better than posting on and Intro.

But moving on, I have been on all the Bio's and they have all worked but they have also all caused me some sort of problem. It may take time to find what is right for you, but I'm a big big fan of the Bio treatments as they gave me back my life.

If your consultant is recommending a start on Adalimumab - Humira then I would say you have a good consultant as he/she is missing out Remicade (nothing wrong with Remicade, but it's one of the first they usually put you on) You also mention the next step would be Ustekinumab – Stelara that to sounds good to me.

As for experience all I can say is I've tried the two you are being offered and they both worked for me as di the others, but Humira gave me a reaction and Stelara has been the best thing ever for me (over 4 years now) That does not mean it will be the same for you as we are all different in what will work, but if you are being offered the Bio's I would say go for it.

They work quick, they give you your life back, and as you are on the NHS you don't have to think about the cost. I can honestly shout from the rooftops "without Bio's my life was hell, but now my life is mine again".

Jim has pointed you to the Bio thread these two are more specific to what you are being offered.
Humira (adalimumab)
Stelara (ustekinumab)

Jayne don't be afraid, the Bio's are nothing like Poison Methotrexate. I'm not going to lie to you there are side effects and you will find that with any treatment, but believe me Methotrexate was the worst thing ever in my life and The Bio's have been the best thing ever.

I would say don't hesitate go for Humira and be prepared for amazement, and if you want I'm happy to talk you through the injections and be there when you start if it's a problem for you.

But like I said don't hesitate to start new threads as you may get more answers.

[jiml]

Jayne you asked me last night whether Fumaderm was an immunosuppressant and I was not sure how to answer I have asked Caroline and I quote her reply here

Caroline said

Answer: NO, DMF, Fumaderm, Psorinovo, they are NOT immunosuppressors.
In fact you can  all read it in my thread on Dimethylfumarates and Psoriasis, specifically in the posts
autoimmune disease   and   RE: Dimethylfumarates and Psoriasis  and RE: Dimethylfumarates and Psoriasis.

DMF works apparently very different from the immunosuppressors, therefore also the flushes and the slightly higher temperature. DMF checks in with the energy system of the mitochondrial cells. What it exactly does is not completely clear but somehow it repairs something that is broken.
There is a slight side effect on the lymphocytes, see the last post reference.
I must add that the casual dermatologist will place DMF in the immunosuppressor corner, but that is because they don't know better and because there is a lack of seeing through the effects that have been studied and gathered in the last 30 years.

In fact it is brilliant stuff, but very neglected by the medical profession (read: they don't do their work adequately)

Caroline

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