Light Treatment, Stelara, Fumaderm???

[PainInTheGuttate]

Hi guys, 

I've been browsing the site unregistered, like an undercover keyboard ninja for a few days now and have found the site very helpful and learnt so much more about P then pretty much anywhere else on the net. Really enjoy reading the success stories to, gives a brother some hope. 

I'm 23 and have now suffered from Guttate P for around 3-4 years now. I've been prescribed, Dovobet (red one and blue one), Trimovate, and some more topical creams none of which have worked. 2 years ago I was sent to light therapy which worked very well and apart from a patch on my lower back and calve I was fully clear. However;

I think I remained clear for about 3 months which was the most disheartening part as I did all those sessions only for it to return so soon. It started coming back very slowly, new bit here, new bit there.  For maybe 4-6 months my P came back but really not that bad. I saw my derm who said we should wait for a bit to treat it as I was on some other medication for acne and we wanted to tackle that first. Also I couldn't do more light treatment as enough time hadn't passed since my last treatments. 

More months went by and slowly it was getting worse but within the last 2 weeks its just got really bad. All my guttate marks are bright red, thick scaly and constantly itching. My scalp is terrible as it has so many flakes in it and my groin looks like i've caught a hideous STD. I still have the Trimovate cream which will clear my groin, trunk and pube region within a week but then the P just comes back worse so I cant even treat that. I can see tiny red dots appearing on my body and now on my arms and I know these are just waiting to get bigger and worse. 

I am going to see my derm tomorrow and talk about the best way to tackle this but I am hoping to get some advice from you all here: 

I know the light therapy works well for me, it takes a bit of time but has minimal side effects and I even get a little glow. However, I just don't know whether it is worth it if it comes back so soon like the last time. (I should say I was due for 20 sessions last time and only did 18 as I was basically clear...I dont know whether that makes a difference). Have people here had times where light therapy has been more successful than others and can it be used in conjuction with more serious treatments like fumaderm?

Alot of you here seem to really recommend Fumaderm, it seems to work and seems like a really good long term treatment and prevention for P. The only draw backs are the side effects, I'm just not sure if I can handle them. My question here is do those of you who are on Fumaderm consider it a last resort when a more exhaustive list of treatments has been completed? Also, how long do you need to take it? Do you stop when/if the P clears? 

My next question is about Stelara, I've read a few success stories here but then the numbers aren't exactly blowing me out the water. I would be drawn to this treatment though because the side effects 'appear' to be less apparent than fumaderm but then I haven't found that many stories to do any solid research about Sterala so any feedback here is appreciated. 

To sum my post up, I just want to know the best way for me to find a long term prevention for my guttate to subside. I know light treatment works but dont want to go through weeks of sessions for my P to come back so I am thinking of tackling it with biologics. 

Any help will be appreciated.

[Fred]

Fumaderm: I'm sure the DMF gang will give you more information later, but you may not be able to get Fumaderm. It's not available in all areas of the UK so it depends on local funding.

Stelara: I'm a fan and have been on it for almost 6 years now, but I doubt very much you will be offered it as the Bio's are usually the last resort and you will need to fail on the oral treatments first.

Light: By what I know they don't tend to keep you on it for long periods.

I would say your dermatologist will recommend one of the oral treatments.  

Fumaderm *If it's available to you.

Acitretin

Methotrexate

Ciclosporine

So I would read up on those and see which one you thing you would be happier using.

Welcome to Psoriasis Club by the way.

Regards.

Fred.

[jiml]

Hi ermmmm. How do I address you can't call you "pain" anyway   to the club. I'm glad you have been reading around the web and that you found this the best place for information....I have to agree there is so much information on all the available treatments here on an easy to navigate site.
The information has been assembled by Fred who keeps the site safe and free from outside pressures, there are also countless member experiences of what works and what doesn't .....I'm sure you will get some good advice here

Well here's my two penneth
The light treatment will only ever give  temporary relief .....I had my lifetime limit on ultra violet after having it most years in my early life

Creams are a short term fix and should not be used long term

You are unlikely to be offered any of the biological drugs Humira,Stelara etc. As they are expensive and the dermatologists protocol requires you to fail on others before they will put you on them

The most likely first choice for you to be offered is Methotrexate... Not a drug I like but it can be very effective

The next after methotrexate could be acetretin, or cyclosporine or the drug I'm on Fumaderm .

Fumaderm please don't be put off by side effects because they will be short lived ( in the grand scheme of things) but if it works it should give you long term clearance....I have been clear over 4 years now ...and have hardly any noticeable side effects .....

Any drug you get you will have to be monitored regularly

The other question you asked is how long do long do you need to take it........well you will probably have to take something continuously, even if just a maintenance dose
Good luck with your appointment .....I hope this might help

Jim

[Turnedlight]

Hi, nice to meet you

I think you will be offered methotrexate next, as per the NICE pathway. (Look up nice pathway psoriasis and click on systemic therapy which is next after light therapy).
But perhaps if you go in and ask about something specific you may go down another route. They aren't very likely to offer you Stelara until you have tried and ruled out methotrexate first. They work their way up the price of the drugs I guess!

Good luck with the derm, I'm seeing mine tomorrow too!

[mataribot]

Stelara is a great choice. However you might be required to try the oral treatments, then tnfs because they arw cheaper.

[JohnB]

Hi and 
If you are going to be hanging around it would be nice to call you something a little less insensitive than Pain.
I'm guessing that you have had the UVA light treatment, fairly quick zaps? They may want to put you through a UVB session before they start talking orals. Every clinic has its own protocols    . UVB entails a tablet 2hrs before to make your skin more sensitive but you have to wear UV eye protection for some time after each treatment. From what my Dermy told me it does have a better success rate with decent remission. Safe to say it didn't work for me, but it might be worth a punt. Anyways keep us all informed on what happens next we are always interested, everybody's story is different. Also check out the off topic section - always good for a giggle.

[Fred]

Hi, nice to meet you  

I think you will be offered methotrexate next, as per the NICE pathway. (Look up nice pathway psoriasis and click on systemic therapy which is next after light therapy).
But perhaps if you go in and ask about something specific you may go down another route. They aren't very likely to offer you Stelara until you have tried and ruled out methotrexate first. They work their way up the price of the drugs I guess!

Good luck with the derm, I'm seeing mine tomorrow too!

We have a copy of the clinical guideline on the assessment and management of psoriasis for GPs and it states:

"In this guideline, first-line therapy describes traditional topical therapies (such as corticosteroids, vitamin D and vitamin D analogues, dithranol and tar preparations). Second-line therapy includes the phototherapies (broad- or narrow-band ultraviolet B light and psoralen plus UVA light [PUVA]) and systemic non-biological agents such as ciclosporin, methotrexate and acitretin. Third-line therapy refers to systemic biological therapies such as the tumour necrosis factor antagonists adalimumab, etanercept and infliximab, and the monoclonal antibody ustekinumab that targets interleukin-12 (IL-12) and IL-23."

You can read more of it here NICE issues new guidance for GPs treating psoriasis

So yes probably Methotrexate as most go that way, but it could also mean Ciclosporin and Acitretin.

[PainInTheGuttate]

Cheer's for the knowledge everyone. I'll talk through everything with the Derm tomorrow. 

I really dont mind the UVB, I'm fairly light skinned so my skin reacts quite well to it. The only downside is that if I don't wear the mask I'll be walking round red faced all day and as my job requires meeting people it can be quite embarrassing. But my P only seems to be creeping in on my forehead and sides of my nose so hopefully I wont need to do loads of sessions on my face....if I do the light therapy that is. 

One interesting thing I need to go back and check with my derm, is the medication I was on whilst I was treating my acne. I was on these pills and had to have regular blood tests and had terrible symptom's of dry face, cracked lips, nose bleeds and itchy eyes. When I was on my 3 month check up I mentioned to my derm that my P was coming back which he said was weird because the drug is also used to treat people with psoriasis. 

Like I say, I'll have to go and check what the drug was as I cant remember the name (which is bad considering I took it 3 times a day for 6 months) and I don't know if it it was just tailored for just acne but I may have already been on an oral treatment which is used for P and has had no effect. I dont know what that means for what my derm will recommend but hopefully it's a step I can skip on this trial and error. 

Also, I'm not adverse to people calling Pain but PITG can also work

[jiml]

Hi again PITG  it sounds as if you were on acetretin from your discription of the side effects,

I will just say that you are still a young man and if I were you I would let the dermatologist lead you. But be part of the conversation with him, remind him that treating the skin has got to be a short term fix as it's not the skin that's the problem it's just a symptom. The problem is your immune system and the drugs that are available all do slightly different things in tweaking your immune system

I wish you luck tomorrow and hope you will keep us informed of the outcome

Glad you found us

[JohnB]

Hi and 
If you are going to be hanging around it would be nice to call you something a little less insensitive than Pain.
I'm guessing that you have had the UVA light treatment, fairly quick zaps? They may want to put you through a UVB session before they start talking orals. Every clinic has its own protocols    . UVB entails a tablet 2hrs before to make your skin more sensitive but you have to wear UV eye protection for some time after each treatment. From what my Dermy told me it does have a better success rate with decent remission. Safe to say it didn't work for me, but it might be worth a punt. Anyways keep us all informed on what happens next we are always interested, everybody's story is different. Also check out the off topic section - always good for a giggle.

Oh am I a numpty or what? Got mi A's & B's the wrong way round. UVB first UVA second with psoralin  tablets