Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hi I'm Paula from Devon, England!

I'm 39 and a single mum. I have had AS for some years now, I was diagnosed as having childhood arthritis which I would grow out of! Unfortunately this never happened and symptoms have worsened over the years as the disease has progressed. I have tried many treatments over the years with little or no effect - including Humira and Enbrel. I also have the diagnosis of Psoriatic Arthritis and my Rhumatologist is unclear as to whether I have one of both of these diseases. Over the last year the affects of my skin conditions have been hurrendous - I have plaque psoriasis, pustular psoriasis, hydradenitus and worse of all pyoderma gangrenosum - resulting in massive open ulcers on my legs which are only mildly controlled by ciclosporin which I have been on since June 2010. As the skin & bones are not good at the moment my dr has decided to put me on Infliximab which I will have to have by regular infusions. Has anyone had any experience of this drug? - would be interested to hear. Also be interested to hear from anyone with AS + skin conditions. My dermatologist has invited me to a meeting next week of 20-30 doctors who will discuss my case as it is so unusual! Is it!!? Glad I found this website and look forward to leaning on new friends who understand as well as gaining new information on how to get through life!

Hi Paula. Welcome, and Happy New Year!

Those open ulcers on your legs sound horrible! I don't have any experience with infliximab or skin conditions, but just wanted to say hello. That meeting of doctors sounds incredible! Are you going to go?

All of this and a single Mom? Wow.

Hi Holly, hope you are well, happy new year! Yes I am going to go to the meeting, I had a phone call inviting me yesterday, you never know someone may have come across this before and may be able to help me and others. If you google pyoderma gangrenosum (although not for the faint hearted - its pretty gross) you will see what Ive had to put up with. Am glad to see the back of 2010, its been an agonising year!

Am off to bed now - enjoy your new year celebrations, Paula

Your boys are so sweet!

Hi Paula! I'm glad you found KickAS(sorry you needed to) lol. I'm Bridget. Isn't Infliximab Remicade? I'm fairly sure . . . lemme google . . .yup it is. and LOTS of us have experience with it! I tried it for almost a year, and it broke a massive AS flare for me but fizzled out over time. I know Inanna(kat) and Angelmom (lisa) are both on it and really liking it.

Your skin problems sound awful! In the "Skin Condition" aisle, I've only got mild rosacea, which I apparently have given to my daughter (grr). Easily controlled with topical stuff like metronidazole and . . . something that's two words, the first begins with T and the second with A, but I'm too stoned on my meds at this moment to think of it. I'm very sorry, I even googled "Rosacea topical treatments" and didn't find it . . . I'm using erythromycin gel right now and it's working well, but my baby girl has to use the steroid. wow I am seriously OUT there right now . . . apparently Neurontin, Robaxim and Cipro put together equals stoner! wow . . .
So sorry I was stoned off my head for our initial introduction, Paula! lol
So how many kids do you have and how old/names/genders etc. ? I've got one, Bailey, she's 2. Being a MARRIED mom is so hard with AS etc . . . my hubby is also sick (mystery illness that sorta acts like MS) so I don't have a ton of help around here, but at least he's here when I NEED him, being a single mom with AS has got to be SO hard. I don't know how you do it.
ok I'm gonna go do something safe for a stoner . . . like play farmville on facebook . . . I should really stop talking before i get myself in trouble! lol
It's so nice to meet you Paula!
-Bridget

Hi Paula and welcome to KA, it's a great place full of great information and a wonderful group of people...I'm glad that you've found us...

Hi Paula - Welcome to the KA family. Glad you found us. Sure sounds like you have a real plate full to contend with. And being a single parent as well as - hats off to you.

Good luck with the meeting with the medical team next week. Hope they are able to sort out these skin problems.

I have psoriasis, as indeed do several KA members. Mine is only slight though - but do use a cream when it flares up on me.

Again, a big welcome.

Molly C (France - expat UK)

Hello Paula, I think Infliximab is better known as Remicade, (Forgive if others oryourself have said or are aware of this) Many on the site cite terrifice progress with it. So all is a good looking future for you. I wish you well for the future and relief a plenty.

Hi there,

Welcome to Kickas and glad you found us. I am of no help, one area AS has not impacted me is skin conditions. Could it be the past biologics you were on somehow... or was it just as bad prior to biologicals?

Hope you can find some answers.

Tim

welcome Paula hoping you meet as many friends as i have lots of good info

Welcome Paula. I'm right at the other end of the island from you - actually beyond the top edge even (Orkney). I'm not diagnosed yet, but been suffering from AS type stuff since teenage years.

Your skin stuff does sound pretty awful to deal with. Heres hoping the infliximab makes a dramatic difference. That panel of docs could be really useful too - at least you know they will do some serious discussion about your case, and it might mean even closer follow up which would be great.