banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums30
Topics43,801
Posts518,838
Members13,858
Most Online1,568
Jun 29th, 2016
Newest Members
Leonag, SoniaPetrowski, listart, NIMBBL, divayadharshi
13,858 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Joined: Aug 2014
Posts: 9
M
New_Member
OP Offline
New_Member
M
Joined: Aug 2014
Posts: 9
So I don't really know where to start..I am new to forums and such so..I am male, 28 yrs old and recently have got confirmation of AS from numerous xrays and MRI which confirms a fusion in both SI joints and active disease in my lumbar and thoracic spine... seen almost half a dozen rhumetoligists and finally found a good one who's hoping to start me on humeria.....BUT I cannot start this treatment until my chest xray is clear...there is some small mass or something in my right upper lobe...had some further testing done today including ct scan of my chest as well as another chest xray .. I'm so stressed out waiting for these results thinking that all I have done is for nothing if I cant try tnf blocker.... I'm in so much pain from my hips and lower back that I find myself not being able to do any bending ...let alone tie my shoes... anyway I'm just reaching out for some support and maybe some responses from others around my age going through similar health issues or stress...thanks for reading and glad I found this group smile



Last edited by matt1986; 08/27/14 06:17 PM.

Matt


AS confirmed 2014- SI joints fused and some fusion in lumbar spine
B27-Positive
Meds-Humira 40mg every 2 weeks
T4 and Percocet as needed
Vimovo (naproxen) 500 mg 2xday
TENS unit used daily on flaring areas

Joined: May 2014
Posts: 42
D
Member
Offline
Member
D
Joined: May 2014
Posts: 42
Hi Matt. I hope the chest Xray issue clears up. I have been on two different anti-TNFs now and they both have made a huge difference, though by no means eliminated the disease. But I would suggest not putting all your eggs in that basket. If you haven't already, give a hard look at others' experiences on this site about the No Starch Diet, or Low Dose Naltrexone, or other remedies that have worked for some sufferers. There's lots out there, though no one seems to have found a universal approach, unfortunately. I'm betting that somewhere down the line you'll find something that at least lessens your pain if not substantially improves it. Best of luck to you.

Joined: Aug 2014
Posts: 9
M
New_Member
OP Offline
New_Member
M
Joined: Aug 2014
Posts: 9
Yes I'm learning a lot from reading others posts and have been thinking of changing my diet..just not sure when yet...I'll have to research the naltrexone a bit I'm not familiar with it...thx


Matt


AS confirmed 2014- SI joints fused and some fusion in lumbar spine
B27-Positive
Meds-Humira 40mg every 2 weeks
T4 and Percocet as needed
Vimovo (naproxen) 500 mg 2xday
TENS unit used daily on flaring areas

Joined: Mar 2002
Posts: 9,522
Likes: 3
Offline
Joined: Mar 2002
Posts: 9,522
Likes: 3
Hello Matt,

I am not longer your age (about to turn 46), but I was a few years younger than you when AS came into my life as well. I was 25 when it came to stay (had 1 prior episode that came and left in summer school at college). I was finally diagnosed a year later at 26.

I was familiar with AS as my father had since I was about 2-3 years old... it took him much longer for diagnosis.. maybe 8-10 years and 2 back operations because the doctors did not know.

There can be some anxiety upon learning the diagnosis.. but at least you now know what you are battling. There are many treatments here.. medications, diet and other alternatives.

This is my advice
- Learn all you can about AS... the more you learn, the better you most likely can treat your case.
- Doctors have little time for patients.. do not expect your doctor to do it alone, you must be involved and be proactive. It is your life and your body, he cannot feel your pain.
- Take one day at a time.. living with chronic condition can be daunting.
- Nutrition... eating healthy is important... even if you do not follow No Starch Diet here as some do.. modern diets of many are making their symptoms worse... so at least eat smart.

Best to you on your course and hang in there.

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Joined: Feb 2011
Posts: 238
Second_Degree_AS_Kicker
Offline
Second_Degree_AS_Kicker
Joined: Feb 2011
Posts: 238
Hi Matt,

Glad you found this site, lots of info and experience to pull from here.

My opinion is that Low dose Naltrexone (LDN) goes hand in hand with an anti-inflammatory diet. I don't think LDN on its own would be a miracle drug for someone with well-seated, systemic inflammation.

Keep researching, the interweb offers a lot more info than doctors do when it comes to AS and auto immune disease. wink

/Kristine


B27+, 2nd Rheumy: 'inflammatory backpain'.
IBS + SI/lumbar/thoracic/cervical/knee/elbow stiffness & pain.
Managing inflammation very well with diet since Jan 2011.
Slow but consistent reduction in symptoms year by year.
Haven't seen a physician in years.
Took LDN (4.5mg) between 2013-2015, 2018-2019.
Joined: Jan 2008
Posts: 21,346
Likes: 1
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
Likes: 1
Just wanted to say hi....Hi! smile

Like Tim, I'm no longer your age; I'm 51, but did start with the gastritis and inflamed intestines at 29 or 30 and then the joint pain and other symptoms at age 35.

It took me 12 years to find a doctor who would dx and treat me; I've been on Humira for a year plus now. But since it took that long, I had to try a lot of other things first....for years I didn't even know what I had, so I was just treating the symptoms....not the best course of action, the meds are a much better way for me now...but I still do all those other non drug things too....

its all helpful. it all adds up.

Again, Welcome smile



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
Offline
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865
We are all here to support each other! My lungs were bad until my 30s. There are lots of folks here that have lived through what's happening to you right now. I'm sorry you have to deal with the disease, but I'm glad you found this forum! This place literally saved my sanity in the first couple of years after DX, then I lost my mind like everyone else here. LOL JK clap

AND... I can't believe I forgot to mention this, swimming has given me back so much mobility. At first all I could do was dangle around in the deep end while clinging to a noodle. But slowly I started doing a little more and now I swim slow laps several times every week. Well... Except the past week while I've been flaring. But normally I swim even through flare. I can't take NSAIDS so I swim in a competition temperature pool, 79F, which makes my joints happy.

Last edited by EricaK; 08/28/14 03:03 AM. Reason: forgot to mention swimming!

ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Aug 2014
Posts: 9
M
New_Member
OP Offline
New_Member
M
Joined: Aug 2014
Posts: 9
Thanks everyone for the replies.. lots of stuff to research and learn about this disease..have many of you tried humeria? Just wondering if it works for you or your friends? Kinda stresses me out thinkin that its going to turn down my immune system, in a sense.. I'm just nervous I guess...anyway Thx again everyone:)


Matt


AS confirmed 2014- SI joints fused and some fusion in lumbar spine
B27-Positive
Meds-Humira 40mg every 2 weeks
T4 and Percocet as needed
Vimovo (naproxen) 500 mg 2xday
TENS unit used daily on flaring areas

Joined: May 2014
Posts: 42
D
Member
Offline
Member
D
Joined: May 2014
Posts: 42
Hi Matt. I just got on Humira myself, less than 3 weeks. No bad effects yet though I suppose it's early to tell. It has had good effect so far: 30-40% reduction in overall symptoms including the removal of inflammation in some key areas (knees, elbows). Prior to this I was on Enbrel for almost 10 years. It had a good effect with no known side effects- although in the last year I had a lymph node infection which may or may not have been due to a down-regulated immune system. (I stopped Enbrel because it was losing its effectiveness- which I believe was more due to increased gut problems than Enbrel itself.) I understand your reluctance to mess with your immune system; it's not a light matter. However, you might want to balance that against your current level of pain or disability, and the possible irreversible damage to your joints. If you choose a biologic like Humira, you can still try anything and everything to beat the disease on a more natural and permanent level in the meantime (I am). And you can also try helping your immune system and holding infections back through other means as well, like supplementation. Sometimes it involves sucky lifestyle choices, but if we don't make those choices many of us get bad enough later that we make the choice anyway- maybe after further damage. I believe you'll find a combo that works though it may not be easy. Best of luck to you.


Link Copied to Clipboard
Who's Online Now
1 members (1 invisible), 35 guests, and 76 robots.
Key: Admin, Global Mod, Mod
Recent Posts
Welcome All New Members!
by Magician - 08/09/22 10:54 PM
Chamomile tea can reduce inflammation
by L33 - 07/26/22 11:20 PM
Best Gym Equipment to have
by L33 - 07/26/22 10:10 PM
Ankylosing Spondylitis is curable
by Sudhir - 07/24/22 07:34 AM
Let Us Know You Dropped In!
by Magician - 07/15/22 05:46 AM
Numb fingers, nerve pain
by Stevenage69 - 07/12/22 11:06 AM
Benifits of Wet cupping/ Hijma
by L33 - 03/20/22 10:53 AM
Popular Topics(Views)
3,230,338 hmmm
1,245,063 OMG!!!!
648,838 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.023s Queries: 32 (0.006s) Memory: 3.2311 MB (Peak: 3.5389 MB) Data Comp: Zlib Server Time: 2022-08-16 04:43:40 UTC
Valid HTML 5 and Valid CSS