Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How many of you.

lovely bunch of people have expereinced remission? when your symptoms have completley dissapeared or sub-sided? just wondering, because when i was 18 i felt as bad as i do now for about 7 months then it went, and now it's back 2 years later! do your symptoms go up and down?, or is it a permanent thing for the majority?

I hate A.S so much, i wish i would have lived/ seen the world before developing this awfulness.

Anyway

Cheers

Drew

Hi Drew,
Nope, never have had remission. I honestly don't remember what it's like to feel 'good'. Sad, but true! Although, I think it's possible to "live" and see the world.. you just have to do it differently than people who don't have AS. By adapting and taking things slower and a day at a time, you can still do things. I know it's hard, but in the end it's worth it. I was out your way, in London, last summer, and had a blast! Take care.. Renee

Hi DrewUK - Think that most ASers experience a remission from time-to-time: not all, but a good percentage. I myself have experienced many 'almost' remissions. Like, one can 'forget' about AS and the attendant problems for days together, then, one is pulled up short, but (for me) usually not for too long or mostly too badly.

Had a major flare recently. About the very worst I have ever had. Short, but by golly, it was a whalloper. Phew.

So. Nowt set in concrete an we're all different. Each presents with a diferent piece/section of the ole jig-saw. Exciting life, innit? (Rhetorical )

Molly C (UK)
Keeping on Keeping on

When I was about 41 years old for some reason it was triggered, and became chronic, getting progressively worse for about 2 years, till I was going to kill myself. Thats when I finally went to my MD for pain meds and sleeping meds, and I was diagnosed and then found kickas and NSD.

I wouldn't call it remission, because I can easily become inflamed again if I eat starch. But after 2 years following diet, I am pretty used to it and rarely become inflamed in my sacrum, so I am pretty much pain free from AS.

I do lead a more restricted life now, being careful physically not to activate a flare that way. But after 2 years I am really feeling great. I am actually ready to get back into gardening big time, I had to let it go for a while. I am also starting to do more variety of exercise. I focused on swimming for a year, but am now biking and hiking on a daily basis again. I actually went out with a pair of hand weights today while walking, hoping to start working the upper body. Thats real progress for me. I have also be healing from Candida/fungal infection for over a year now, and that is finally getting back under control.

So symptoms are stabilized, but I wouldn't call it remission. It takes a lot of discipline. It didn't happen on its own.

Drew-
Don't freak, there are better treatments today than when I got AS or even when I discovered KA....I still rode horses (ok I galloped and trotted) while stiff, in pain, and on multiple pain meds that had side effects!! You can still see the world and experience life in all its glorious weirdness!! I'm on Enbrel, which has enabled me to quit other NSAIDS and alternative meds/pills....
Flares can and will happen, watch out for your eyes- iritis...if you feel like looking at a light source is painful like your eye is swelling and will explode....don't freak, get to the eye doc for some prednisone...its only happened to me twice in 20 yrs but happens frequently with other people....
just remember that you need to find a great rheumatologist and work with them on treatments....I recomend trying diets mentioned here, as well as the biologic meds like Enbrel. Be open minded to treatment and stay positive, you may need to switch doctors at times, take control of your decisions and you will discover that you can live, love, and Rock despite AS!!
Peace
Linc

hi drew,

i would definitely say that whatever i have waxes and wanes,

sue

Yes, I just experienced a complete remission after SI joint injections. It was bliss for 3 days unbelievable but alas it's back to usual I felt like I was in the movie Awakenings for a few days but now back to comatose

Hi, Drew:

Quote:

---

lovely bunch of people have expereinced remission?

---

I achieved very long lasting remission. And, I know EXACTLY HOW I accomplished this: I fasted for 20 days.

Can help YOU do the same--if you want...

Regards,
John

Hi Drew, I am a Brit living in Texas, It happened to me at age 26. I have travelled extensively. I have lived in Singapore, Dubai, Abu Dhabi and the USA twice. I am now 59 years, old play a lot of golf and have a business here in Texas. Do not let this beat you. George

20 John? Wow - ten was not easy... twenty!

I have almost complete remission through the NSD/exercise alone. Only have a bit of pain if I sleep too long now. Eat the wrong thing and I feel it though.