Hello from Jayniepops

[Jayniepops]

Hello there,
Newbie here, not sure where to go or what to do. I just stumbled across your site after feeling quite disappointed with my bodys' reaction to the treatments I have had so far. I am feeling very disillusioned and quite poorly and wondered what other peoples' experiences have been with their treatments.
Any information or discussion would be most appreciated.

BTW - I have never used a forum before - so any help or pointers there would be a help too !![/font][/size]

[Fred]

Hello there,
Newbie here, not sure where to go or what to do. I just stumbled across your site after feeling quite disappointed with my bodys' reaction to the treatments I have had so far. I am feeling very disillusioned and quite poorly and wondered what other peoples' experiences have been with their treatments.
Any information or discussion would be most appreciated.

BTW - I have never used a forum before - so any help or pointers there would be a help too !![/font][/size]

Hello Jayniepops to Psoriasis Club.

Don't worry we will soon help you on finding your way around, you will find loads of information and a great bunch of people.

For help on using the forum just shout out or have a look here: Help using the forum

There is also a test section you can play with here: [Group Specific]

Just dive on in, have a read through some threads and don't hesitate to ask.

Regards.

Fred.

[jiml]

Hi jayniepops a big welcome to the forum I can say you have come to the right place for people who understand how you are feeling i used to get depressed when treatments didn't work
I'm now on Fumaderm which is available through your dermatologist (not doctor) and I have been clear for three years now.
There are many treatments you could be offered and one will work for you
Come back later and I will give a better welcome and advice for you but I'm working on my phone and struggle with the little keypad
I will be back in an hour or so I will write again so do come back
Jim

[Caroline]

Hello Jayniepops,

Welcome to Psoriasisclub, a group of fellow psoriasis sufferers in all forms.
With "in all forms", I mean all forms of psoriasis, but also all forms of people here on the forum.

From you profile I see that you have used Acitretin, methotrexate, UVA , many creams lotions and potions.
We, at least I, but the others also probably, do understand that you are not satisfied with your treatments. Most of us have passed these stages already. We have few members that are using Acitretin though, and who are very satisfied.

Do you have "only" psoriasis? And where? Over your whole body? Do you perhaps also have psoriatic arthritis?
Let's get acquainted with one another. You arrived at a very friendly bunch of people and the forum contains lots of information we can point you to.

Beware of the "Off Topic" section. Not everything there is as it looks. There may be weird topics over there, but also nice chatting threads for when you want to talk about anything else.

A very welcome and enjoy our forum

Caroline

[Jayniepops]

Thank you all for such a fantastic welcome,

I first showed signs of psoriasis in 2005/6 apparently due to the shock of my (now ex ) partner being attacked and suffering severe brain damage ( I dont want to dwell on this - after many years of treatments and much heartbreak - he is now on his feet but we are no longer together)

I am presently on Acitretin of which the dose has just been increased, I am suffering a few of the common side effects, dry lips , dry mouth and eyes, funny taste in mouth , loss of appetite - of which I am not complaining. But (TMI _ ALERT) I have been bleeding constantly for 10 + weeks now. I have been to the docs - he says its stress but could be my age (47 years) as in the menopause but he thinks I am probably a bit young and to just monitor it . I have a pretty stressy life at present (due to loss of business and home) and have 3 kids and 3 stepkids (all teenagers ) need I say more lol.
I guess I am feeling a bit down as having tried many of the topical creams steroids and lotions , I was treated with UV light treatment. which completely cleared it up - a month later it was back. I was the prescribed methotrexate for 4 + years ..... what a nightmare!! Always ill, felt down , and the psoriasis did not improve at all (although during this time we lost our business and home and I suffered a nervous breakdown- so it could have been all the stress)
Since then I have bee on Acitretin and it was teamed with UV light treatment. which pretty much cleared it up but within a week of stopping the light treatment It was back again with a vengeance hence the recent upage of doseage (lol- dont think they are real words but you know what I mean)
I have been referred again for rheumatolgy and orthopedics ,multiskelital? I think and am waiting on appointments.

Ok so thats pretty much my life story , again I am not dwelling on the past but feel its necessary to point out these few sad things that have happened so you can get an insight.

Introduction complete???? lol

Thank you all for having me

[Fred]

Yep you need to de stress as it's very bad for psoriasis. Not easy to do I know but I always say "try to find at least one positive per day you can enjoy" We can help you with relieving the stress a little in the members only boards especially this one: [Group Specific] Take no notice of what Caroline said as she is the only one who post weird stuff

You will find we have a sense of humour here, but we can also be there when you need to lean on a shoulder.

I would suggest you have a read up on these threads and then have a word with your dermatologist about where to go next.
Biological Treatments For Psoriasis
Fumaderm
I have found most members here seem to do the best on either a Bio or Fumaderm (DMF)

Things have and are moving on rapidly with modern treatments so read through the above, have a chat with your dermatologist and tell them you want to move on to something better and get your life back.

[jiml]

Oooh jayniepops you have been through the mill and are still having problems. Can't help with the bleeding problems (oh ignore me blushing ) but it could be the onset of early menopause brought on by stress .. I don't think the acetretin would be the cause.
I like you had a terrible time on methotrexate.. And although it worked the feeling constantly down and nausea prompted me to ask for a change..
I was lucky I was offered acetretin or Fumaderm and I opted for Fumaderm for no other reason than I could pronounce it
What a lucky day that was for me it took it a while to clear but I can say I have never been this clear in all my adult life .
I'm not saying acetretin is not good because we have several users on this forum and it is giving them clearance.... I don't think you said how long you have been on it... But you will need to persevere and moisturise plenty.
There isn't really a quick fix although several members on biological treatments have had fast results...
I would say stick with the acetretin if you haven't been on it for long
You should soon see an improvement if you are getting the side effects you have with dryness
I suggest you read through Kelly's thread here Acitrecin - week 1 she has had similar experience with acetretin
Try to come back here often it really helps to talk and here you can do that securely and there is usually someone around to answer any query or just to chat with in the off topic section
Good luck
Jim

[Jayniepops]

Thank you Jimi

I have been on the acitretin for about 8 months ( ish) but the dose put up about 3 weeks ago. Sorry to cause you to blush lol.
I will indeed look at the link you posted re Acitetrin . In the meantime what can you tell me about the F>>>>>> treatment you are on?

many thanks

Jayne

[jiml]

Hi again Jayne my blushing has finished
What can I tell you about my treatment...... Well in my mind it's the best thing since sliced bread it has totally given me my self confidence back and I am now able to go to swimming pools without embarrassment . Wear shorts ( well that's a bit embarrassing) but no plaques or red skin on show .
I started with Fumaderm initial which is a low dose of the full drug for several weeks upping the dose as I was instructed . Then went onto full strength tablets and again incresed the dose until I was taking six tablets a day it cleared me completely I'm guessing now as it was three years ago and I wasn't documenting my progress on any forum unfortunately but I'm thinking about two months and I noticed a difference. I then reduced the tablets and am now on three a day and still clear
I had side effects intestinal cramps and hot (and I mean hot ) flushes.
I no longer get cramps but still get mild flushes ( they are quite pleasant) on a cold day
Fumaderm is available on the NHS through dermatologists . They are effective in 70% of people most that give up do so because they get bad side effects. It has been in use in Germany for well over20 years and is a very safe drug to take as long as you have your bloods checked regularly
I could be employed as their salesman as I really recommend this to anyone who is struggling to find a suitable alternative
Sorry it's taken me a while to write this but I am doing it whilst trying to work at the same time
Work finished now you have my undivided attention

[Jayniepops]

Jiml

I am flattered by your undivided attention lol.

i am not due at the derm ( I see this is the pref term for dermatologist - lol) til Jan but I do feel that I need to discuss the options as this is the first time (seeing on here) that I have realised that this psoriasis is for life and has to be managed rather than cured. I wish someone had told me earlier
I feel there must be some changes to lifestyle that must help.
Unf the stress lives with me at the moment in the form of 6 teens and a lot of money probs (due to loss of business and then home) . Like I said before I am only painting the picture , not dwelling or asking for sympathy.
I am proper made up that I stumbled across this forum. Its so nice to know that there are other people out there with the same probs and cant thank you enough for your support - all of you xxx