Intro by @Lynn

[@Lynn]

Hi. So great to hear about this group and to read the various threads-they are of great comfort to me and are also so informative. Thank you. 

 My daughter (18) has extensive guttate P on her body, legs and arms and plaque P on her scalp. 

She has been on treatment for the last 18 months with no change at all to her P-in fact it has become worse. 
She is on the maximum dosage of methotrexate that our doctor is comfortable with and also has topical creams-  dovobet,diprosalic, various tar products, clobex shampoo(which gives her painful hairline acne if used for too long. ) I am probably forgetting a host of other potions and lotions. 

The reason I am posting is that I feel that this way of treatment has gone on too long and it's time for a change. Our dermatologist agreed and has given us various options: acitretin, cylocsporin, phototherapy or one of the Biologics. He is getting back to me on more information about each drug. 
Any advice? I have read some of the threads on Stelera and it seems very positive. 

My question I guess is:-what would the recommendation be from anyone who has walked this road before?
I find it really hard making a decision for my child when all of the drugs have such serious side effects. 
I look forward to any thoughts or suggestions. Many thanks.

[@Lynn]

Hi. My daughter (18yrs) has extensive guttate and plaque psoriasis on her scalp, body, arms and legs. She has been on methotrexate for two years now with no effect. Also many lotions and potions- dovobet, diprosalic, clobex, tar creams, salicylic creams to mention a few. 
My question is: advice on the next level of treatment? Systemics or biologicals?
Any advice would be most welcome. 
Thank you for this forum.

[Caroline]

Hello Lynn,

Welcome to psoriasisclub. That as first.

As second, if your daughter has no results on MTX for two years....... immediately STOP !!
It is a dangerous drug. Certainly for youngsters.
Really if I had a daughter that age, I would never have accepted this prescription, but I assume you did not know.

I have seen you have posted two things, I am going to look at your other post first.

Caroline.

[Caroline]

Hello Lynn,

Now on the treadment or your Daughter I did already answer in the other post. Yes it is time for a change. MTX has to start working withing 6 to 12 weeks, if not, do not continu. It has no sense and is too dangerous as it is quite toxic stuff. In a higher dose it is also used for cancer treatments.

On potions and lotions, I don’t know of any user of the forum who has a consistent clearance on potions and lotions. Yes there is clearance on the potions with corticosteroids but it also has an impact on the skin, it gets thinner.
Neither do I have any knowledge of members of the forum who have continued clearing with lighttherapy. Most can only use it until they reach the max time of UV, you cannot continue on it as your risk on skin cancer on a later age rises too much.
Now I don’t know if you are light or dark skinned. People with dark skins can withstand the UV much longer.

On the systemics, Personally I would avoid cyclosporine it is also a nasty drug. Acetretin may be possible, there are several with good results but also weird side effects.
In Europe we have the Fumarates, Skilarence or Fumaderm.
That might be interesting for your daughter as it is transformed into a nature substance in your body, and then does its moderating work. However I don’t know if they are available in South Africa, maybe you can import them from Holland..

After that, if that does not work, you will have to make the step to biologicals, where Stelara and Cosentyx have very good papers, better than the other Bio's.

So far a short introduction.
If you need more information on a subject or product, just shoot the question and someone will jump in with information and personal experience.

Cheers,
Caroline.

[@Lynn]

Thank you for your advice and help Caroline. My apologies about the two postings!! I am new at this and thought the first one hadn't gone (blush). 

Thank you for confirming that lotions and potions alone won't help -she spends forever trying to get to all the lesions and it isn't possible. I also don't like the idea of cortisone being used topically on a long term basis. I am happy that you confirm our time with methotrexate is up. The side effects of all of these drugs are not to be taken lightly and this is why am doing my own research now. 

I will investigate the drugs you mentioned and see if they are available in South Africa. 
Many many thanks for the advice. It is wonderful to find an honest unbiased point of view. 
Thank you!!!

[Turnedlight]

Hi nice to meet you

I just want to add to Caroline’s advice, acetretin requires you not to get pregnant for 2-3 years after the end of treatment - that is potentially a problem for an 18 year old, plus I’m not sure I’d be confident even after that time.

I hope she gets off the methotrexate soon, it obviously isn’t working and she’s likely to feel so much better when she’s off it - personally I found the higher doses made me feel like an old lady!

All the best with finding something that works for her.

[jiml]

Hi Lynn and   welcome to the forum, you gave reached what I believe to be the only independent psoriasis forum that has no bias to any one treatment as it is self funded by Fred who won't allow manufacturers to peddle their drugs here but would rather let a group of fellow sufferers share their experiences  of the various treatments which gives a truer picture of what you can expect

I can't add much more to what Caroline and Turnedlight have said regarding the options left for your daughter but can tell you I have been on the fumerates for over six years and hope for it to continue into the future the one I'm on is Fumaderm and it gave me my life back

Biological s are good but at 18 I would be inclined to try not to get on them yet

Here's a few links to the oral systemic treatments

Acitretin

Ciclosporine

Fumaderm

Skilarence

Otezla

Any questions fire away .....I'm usually hanging out in the bar [Group Specific]

[Fred]

Hello @Lynn   to Psoriasis Club.

I have merged your two threads in introductions to this one thread. To get more answers to your questions I would suggest starting new threads in Prescribed Treatments For Psoriasis as it will get you more answers. This section does get some, but not as many answers and will be closed after three months. No obligation on your part, but you are welcome to start as many threads as you wish for each question.

I see Jim has posted you links to the Oral treatments, this one will tell you more about the Bio's Biological Treatments For Psoriasis and I would recommend Stelara if your daughter has the choice.

I have sent a PM to all that posted in answer so they all know where this thread is.

Regards.

Fred.

[JohnB]

Hi @Lynn and welcome to the Club.
I have been on Acitretin recently but did suffer from some side effects, one of them was a raise in ALT levels so I had to stop taking it. Such a shame as it was clearing nicely BUT I cannot recommend it for your daughter as as already mentioned, it is normally avoided in young women as it has a high likelihood of causing birth defects even once the drug has stopped being taken.
Good luck in deciding, it is a black art selecting treatment and unfortunately what works for one might not work for another.
JohnB

[Grizzly Bear]

Lynn

I’m the insane one on this site, everyone on here picks on me, can’t think why ?


Get some coconut oil for moisturising and has your daughter used polytar shampoo ?

Another one she could try and that’s the Aveeno range Lynn. They all contain oatmeal and they are good.

I know that we are all different in the way treatments, oils etc and we all react differently but fingers crossed that your daughter will find something that will help her bless her.


I was on Stelara and it was very good indeed.

Unfortunately Stelara has stopped working after nearly two years and I’m going onto another biological drug, thank christ.

Anyway, I hope that you get some answers and that you stick around on here Lynn.

Ask any questions that you may have too Lynn.

GB