Hello from wooleyb

[Wooley]

Looking at the detail of that trial it looks like it might be worth a try and hope you don't get the placebo  

But the drug is successful apparently for rheumatoid arthritis ....and there is hope that the cells it blocks are the same as those that cause ppp
Good luck

Hi jiml

Yes the trial sounds interesting (if I don't get the placebo mind), however the drug they are trialing probably won't be released for some years to come apparently, so the consultant said, he did say though if I take part in the trial it bumps you up the ladder to get the drug early on if / when it is released (and works of course).....whether that is the case though I wouldn't know for sure.....

[Wooley]

Hi Jiml / Fred
 
Thanks both for replying to me and thanks for your words of advice / encouragement and of course for reading my ramble!!  Yes, I think I have just got my head around the fact I have it life now but generally I am a happy go lucky person so I will be sure not to let it get me too down in the dumps about it.  To be fair the consultant said that it would be a lengthy process finding the right treatment for me so I will just have to try and be patient and wait until that time comes along…… Fred I have read about coconut oil so will definitely take a look into that and thanks Jiml for the tip on Cordran, given the current state of my feet that would definitely be worth pursuing.
 
I will definitely have a look around the topics including ‘off topic’, glad to see there is a at least one sensible person on here Fred ?  I will also subscribe to the newsletter Jiml so thanks for that.
 
Thanks again both for making me feel so welcome and for welcoming me into the group ?

I'm glad you found us wooleyb....I hope you stick around, you will find it a great place for learning more about the life sentence we all have, in a happy friendly environment ....and should you visit the off topic section you will find there is only one sane one here "moi"  

If can also recommend coconut oil  

Haha, as i said as a newbie I will believe both you and Fred (for now)   

I will stick around definately, I feel soooooooooooo much better already about said life sentence we all have and you all seem like a good bunch of friendly happy people for sure......

I have just soaked my feet in coconut oil - AND they feel great!!! 

[Wooley]

Hi wooleyb . welcome to the best place you will ever find on P and PsA , there are no adverts on here with nobody pushing rubbish and magic cures like some of the other sites.
If you want to rant go ahead , if you want advice go ahead and ask , we are all in the same boat and we know what it's like so any answers you get will be from people who know what the problems are and will be truthful , mind you most of the inmates are barmy but don't let that put you off. There is more information on this site than anywhere else that I know so have a good look around ask if you can't find what you are looking for . Bear in mind that we are all different and what works for one may not work for another and that goes for side effects as well.
Coconut oil is really good and if you look it's used in a lot of other medications .
Best of luck , just ask away and one of the best ways to bottom this sod of a problem is to realise that you are not alone .

Dave

Hey Dave

Thank you very much, its reassuring that the group seems to be just a great group!  Yeah sorry for the rant, but I feel so much better today about everything, I can't tell you how much!!  For the first time since April, reading through the forums, I feel that i am not alone...... Also great to see there is a barmy/insane feel to the group, just what i need right now is people who just get on with things but who can offer sound advice and help and most of all a shed load of support and are a little bit insane too 

Thanks Dave

[Grizzly Bear]

wooley to the loony bin.

As the other pillocks members said, we are in the same boat. (Namely, the Titanic )

One thing that I will say wooley, don't believe the codswallop they all say about me. I'm the same one on here, not them.
They always pick on me.

Do you think I should phone the RSPCA ?

Wooley, I think you will enjoy it on here. We have a gold mine of information on here .

Catch you later, alligator

GB

[Caroline]

Hi Caroline 

Thank you very much for your welcome and again for reading my ramble!!  It's not something I do often but it felt good to get my frustration out there so thanks for your kind words. 

I should fit into the club very then well if most members are more or less insane   Ah Fred, well as a newbie i can only believe what he tells me (for now lol) I guess!! 


As for my PPP, I completely agree with what you are saying, they are already talking to me about a drug called Acitretin and have given me a leaflet on it, so fully expect to be given that at some point in the near future...... Because I have PPP, the hospital have also asked me to consider going on a trial drug/placebo in January, it is called the APRICOT trial but to be honest as this is all new to me at the moment, I will revisit again in January and decide then.....

Thanks again Caroline 

Hi Wooleyb,

I like that you have a good feeling about the forum and its inhabitants, , it's very nice to have you here.

Acetretin is a known one. There are several members who have tried it or who are on it.

The apricot trail however might be something interesting. I have read something about it, and it is an Il-1 inhibitor.
On other places on the net, I find the following:

Quote:

---

Cytokines of the interleukin-1 (IL-1) family, such as IL-1α/β and IL-18, have important functions in host defense, immune regulation, and inflammation. Insight into their biological functions has led to novel therapeutic approaches to treat human inflammatory diseases.

So I think that is interesting. It is a different inhibitor than most other biologicals or systemics, e.g. Acetretin does not aim for this IL-1, DMF however does.

Our body contains very complex chemical reactions. And our immune system circles around all kinds of cytokines, interleukins, T-helper cells, pathways, and more. It is so complex that to investigate one tiny reaction they need a whole study.
But on the average we have an idea of the triggers of Psoriasis, which still means that we do not know the cause of why these triggers are activated.
What medicine gradually can do is reduce the triggers and so reduce the psoriasis. They still cannot take away the cause....


Caroline

[Fred]

The apricot trail however might be something interesting.

Tink was asking about it and I gave her the relevant information as we don't promote trials, I'm not sure if she went for it though.

[Wooley]

 wooley to the loony bin.  

As the other pillocks members said, we are in the same boat. (Namely, the Titanic   )

One thing that I will say wooley, don't believe the codswallop they all say about me. I'm the same one on here, not them.
They always pick on me.  

Do you think I should phone the RSPCA ?  

Wooley, I think you will enjoy it on here. We have a gold mine of information on here .

Catch you later, alligator  

GB

Aww Grizzly Bear, i can't believe that they pick on you, i think you should phone someone, not quite sure who though!!!?? 

Thanks for the welcome to said loony bin, i am more than certain i will fit in lol!! 

I am sure I will enjoy it on here, the information so far has been brilliant!

Thanks so much for the welcome GB

[jiml]

He can always phone me   I'm the sane one here

[Fred]

He can always phone me   I'm the sane one here  

Or me, I'll soon tell him where to go.

[Grizzly Bear]

You're most welcome Wooley

By the way, love your avatar picture

GB