Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group Looking for support

HI,

Im Christine. I was diagnosed with AS just a few months ago. I am only nineteen and also I have been diagnosed with scolosis and hypermobility. I have started Enbrel and find it an amazing help. But I am looking for ideas for what to do when I'm not allowed to take Enbrel. I have only been on it for a month, when I got a sore thoart and they took me off of it. I am just looking for some advice on how to deal with AS both on and off Enbrel and what might happen to me.

Thank you so much,
Christine

Hi Christine
Glad you found this forum - I've found it to be an absolute lifesaver. Being diagnosed with AS so young is a nightmare, but at least it means you can start treatment early, unlike many here who suffered so long without diagnosis. Please have a look at the diet forum. That will give you so much hope that you can improve your life and not just feel that everything is out of your control.
They are a great bunch of really supportive people here on kickas.

Thank you for this reply. I am just looking for someone to talk to about this. No one in my family shows symptoms and my college friends have a hard time understanding. I will definatly check out the diet part, but I have to admit, I did try a diet before I began treatment, and it left me weak and fainting. Did any diets work for you? How do you manage your pain? How do you know how far the AS has gone?

Hi Christine and Fwsoon

Welcome both of you.

We have many knowledgeable and helpful people here. I found the main board was where I was able to get the most immediate help, especially when I am in pain, and just needed someone to talk to.

I am still learning about AS.

Looking to see you on the mainboard. Lots of the members go there first before looking here. Just a suggestion.

Hugs from another member who loves the kickAS family.

Gerri

Hi Christine - welcome to the forum. I just found KA about two months ago - I have had AS for 38 years. This site and especially the diet has given me more relief and hope than I have had in many years.

Please spend some time and read as much as you can.

Ask questions

Yes when I started the diet I was fatigued and week - but that passed in a few days. The diet helped me in 3 days

Brian

What brilliant news Brian. Well done, I hope you continue to improve!

Hi, Christine!!

First, Welcome to KA!! We are glad you found us!! Please read alot and post often..that is how we have all started. KA is a great support site. There are lots of folks, in all different age brackets, parts of the world and stages of AS. There are tons of treatment plans as well. So, lots of information!!

As for your specific question about Enbrel....if you have to stay off the Enbrel, rest is very important. Lowering your starch intake may also help. I try to take hot baths or showers and use the Mobic I am prescribed to help ease the pain.

One of the biggest things when you are on Enbrel to remember is try to keep germs at bay. Use hand sanitizer and Lysol and just generally try to avoid folks with colds and the like. It is not that difficult, just a little annoying.

Hope you get to feeling better!!
Holly

This site is awesome and really cool helpful people. There is endless information here...I hope you continue to feel better and a few shoulders to cry on isn't bad either!

aloha chris,
welcome

this could be my story, but i'm only now just 19 at heart.

the enbrel stuff makes it hard to defeat something once you caught it; URI/sinitus are the most popular thingees for
enbrelee's to catch...

the trick is staying healthy enough long enough to keep doing your shots long enough to get some momentum-
think of enbrel like surfing...ya push off, ya paddle, get momentum, up on the knees, the wave drives- sometimes ya
crash, sometimes ya make the leap and get to show off.

the average is 1.1 infection per year on enbrel...your target has to be to do better than average...the syuff in the
white pages literature will tell ya...enbrel (if one responds to it) will keep doing more and getting better over about
a four to six month period of administration {in other words as good as you felt at one month, well it gets better}...
AND after one has been on enbrel for several months well if'n ya have to stop the enbrel cause you caught sumptin'
well it takes about a month for the enbrel-effect to go away all the way.

mixing metaphors here for a moment...back to the surfing analagy if you stop enbrel for a while think Newton's
law of inertia...take a while to start and stop.

as holly said...sickness bad- don't get one. eat well, avoid sick people, treat small wounds, don't get run down.

now the really cool beans...once the infection is vanquished...ya start doing that enbrel goo again and
presto chango back o bmb in a sconce (that's bio-modified babe, btw).

is life every like " purfect "...well ????, i use pain meds, some take some celbebrate, some use low dose steroids-
what ever get's ya thru the night...it's all cool

so kid,
good luck
keep shootin'
aB

Hello Christine,

Such an early diagnosis can get you feeling down, I understand, but it is good to catch it early so you can prevent any damage to your bones and joints with meds. I am 27 and was diagnosed at 25. I am the only one in my family with such ailments and my roomates are all triathletes and as healthy as you can get so I can relate to you having no one that really gets what you are going through.
I was just diagnosed with Crohns as well so I am trying not to get down at that fact that I am 27 with 2 chronic conditions, this site has helped me tremendously.

I first managed my AS pain with ibuprofen and enbrel, now that I have a crohns diagnosis I can no longer take the ibuprofen cause it is terrible on the stomach so I'm taking pentasa (another anti-inflammatory that works for both crohns and AS). It is trial and error finding the right meds and correct dosage that works for you but I promise that once you find it you will start feeling better and things will start looking up for you.

Xrays will show the progression and severity of the AS - bone spurs or fusion is what terrifies me but with treatment and the enbrel I take it is not so likely. So get on some preventative meds and exercise, it really does help, especially with the flare ups I have gotten in my neck, when I go to the gym and get in some cardio it really does help with the pain of the AS - and I like to tell myself that it is helping me sweat out some of the toxins from all of the meds I have been putting into my body.

I hope this helps, feel free to shoot me an email. I can truly relate to your story, and hope you are feeling better soon.

Best,
Jen