banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Kickas Links
·HOME
·Forums Main Index
·Register!
MEDICAL CENTRE
·Medicine Contract
·AS Patient Guidebook
·Pain Map
·Disease Modification
·Ask your doctor
·AS and RA Papers
·AS Acronyms
DIET CENTRE
·London AS Diet
·Molecular Mimicry
·AS Dietary Primer
·AS Food Guide
SUPPORT CENTRE
·In Memorium
·KickAS Stories
·KickAS Banners
·Donations
Forum Stats
12,773 Registered Members
28 Forums
43,379 Topics
515,988 Posts

Most users ever online: 1,568 @ 06/29/16 03:25 PM
Newest Members
Angeline, Lee79, felicial, PatchyP, Hilja
12773 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.
Page 2 of 2 < 1 2
Topic Options
#506956 - 10/08/14 04:55 PM Re: AS sufferers using Stelara? [Re: Tnate]
Chaka Offline
New_Member

Registered: 03/24/13
Posts: 9
@Tnate - I'm very curious. What are you current methods for keeping the AS under control? I don't mind folding in new things. I'm surprised exercise no longer helps, that must be very frustrating.

Coincidentally, I am scheduled for my yearly colonoscopy at the end of the month and I have been debating whether or not I should actually do it because I am afraid it will undermine/undo my over for month AIP diet efforts. Your story makes me wonder if I'm not crazy to be worried about it.

As for AIP? Are we talking about the same diet? The last thing I ever feel is hungry on this diet. What with all the protein and fat I'm consuming. I certainly feel deprived; I want my cookies and ice cream and cheese. But hunger should not be an issue.

The diet does not starve you of carbs per se. It certainly doesn't allow grains and discourages sugars, but carbs that can be found in plaintains, sweet potatoes, squash, etc are highly encouraged. Because of what it disallows, most people will be eating a lot less carbs, but there's no "no carb" rule. Now fat? Fat is ENCOURAGED. And they want you to fold in fats you never really thought about eating, rendered beef and pork fats, "save that bacon grease and use it for your vegetables" etc.
_________________________
*****
DIAGNOSIS:
Ankylosing Spondylitis March 2013
Psoriasis May 2013
Ulcerative Colitis August 2013
PCOS February 2014
Multiple Sclerosis May 2014

TREATMENTS:
Enbrel April-July 2013
Humira July 2013-April 2014
AIP May 2014-present
Stelara July 2014-present

Top
#506957 - 10/08/14 04:55 PM Re: AS sufferers using Stelara? [Re: CTPE]
Chaka Offline
New_Member

Registered: 03/24/13
Posts: 9
@CTPE, will do
_________________________
*****
DIAGNOSIS:
Ankylosing Spondylitis March 2013
Psoriasis May 2013
Ulcerative Colitis August 2013
PCOS February 2014
Multiple Sclerosis May 2014

TREATMENTS:
Enbrel April-July 2013
Humira July 2013-April 2014
AIP May 2014-present
Stelara July 2014-present

Top
#506958 - 10/08/14 05:03 PM Re: AS sufferers using Stelara? [Re: Bax1]
Chaka Offline
New_Member

Registered: 03/24/13
Posts: 9
@Bax1 Are you me??? I did a 4 day water fast over memorial day weekend and then moved to a 3 day juice fast. I was absolutely desperate and that alone stopped about 60% of the AS flare in its tracks. From there I figured that my body was about as free from food allergens as it was ever going to be so I committed to doing strict AIP from then on and haven't deviated since.

I confirm that for the first month of the AIP diet I was exactly as you described. I would walk my dog through the park in a total fog. One leg in front of the other required concentration and effort. I was tired. Yet it was totally easy to keep going with the diet because, I may have been sleepy but my back didn't hurt (and my stomach had NEVER FELT BETTER). The good news is that this exhaustion absolutely passes. It took a little under a month for me I'd say. My body was used to having lots of carbs to choose from to burn energy and all of a sudden it was trying to get its day's energy from like 60-80 grams of carbs a day which was NOT enough. It took my body a minute to figure out that it would need to switch to the protein and fat in my diet in order get the energy my body needed to move. After that I've felt as right as rain (or as right as rain as someone with MS can possibly feel).

Sometimes I think about doing NO starch (because my stomach seems to not react well to tubers and plantains) - plus I could get some cheese back in my life which would be f-ing amazing.
_________________________
*****
DIAGNOSIS:
Ankylosing Spondylitis March 2013
Psoriasis May 2013
Ulcerative Colitis August 2013
PCOS February 2014
Multiple Sclerosis May 2014

TREATMENTS:
Enbrel April-July 2013
Humira July 2013-April 2014
AIP May 2014-present
Stelara July 2014-present

Top
#507626 - 11/11/14 08:02 PM Re: AS sufferers using Stelara? [Re: Chaka]
CTPE Offline
New_Member

Registered: 09/16/13
Posts: 5
Chaka,

Any updates on the Stelara?

Top
#507844 - 11/29/14 12:11 PM Re: AS sufferers using Stelara? [Re: Chaka]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 517
Loc: phoenix
I no longer take any TNF inhibitors due to malaise from them. I had great success with Enbrel for a long time so I know what it's like to feel healthy. we considered Stelera but decided against it, as their is no real data for AS patients. I'm waiting for the AIM drug that is in it's third phase as it has had outstanding success but I'm still hesitate to take more drugs for my condition.

Your post reminds me of what i've gone through from a dietary point of view. Did the no starch, fasting, juicing regimen over and over again with little real success. And I felt wasted and terrible on these regimens.

What I finally did was go completely dairy free. I am also gluten free due to UC which it completly controls but doesnt really help my AS. The dairy free has reduced my symptoms over 50 percent. I live with a lot less pain especially sleeping at night. I have maintained this for 6 months now so I know it's just not a placebo effect. You may want to consider trying this.

Top
#508035 - 12/13/14 04:18 PM Re: AS sufferers using Stelara? [Re: Chaka]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 71
Loc: SF Bay Area, CA, USA
So how did you get insurance to cover STELARA? It's not approved for AS. Currently some Phase II clinical trials have been promising, but there is no FDA approval for ustekinumab (STELARA) for AS.


Edited by MikeGinnyMD (12/13/14 05:11 PM)
Edit Reason: posted before post was complete

Top
#509388 - 02/18/15 12:12 PM Re: AS sufferers using Stelara? [Re: Chaka]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 517
Loc: phoenix
I have seen studies where Stelera has worked quite well for AS and is well tolerated . In one study there was only one serious case of side effects.
The interesting thing is most psoriatic arthritis patients I have read on boards have stated it did NOT help much with their pain.
We dont have a lot to go on with this outside of the promising study. It targets the IL-13 gene not the IL-17 that cosentyx does.

Top
#509781 - 03/08/15 01:05 PM Re: AS sufferers using Stelara? [Re: Chaka]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 71
Loc: SF Bay Area, CA, USA
So... is anyone here on STELARA? I'd love to hear some stories.

Top
#517569 - 08/29/17 05:14 PM Re: AS sufferers using Stelara? [Re: Chaka]
mutagen Offline
New_Member

Registered: 04/14/14
Posts: 11
I've gone through several biologics. Humara, Cimzia, Cosentyx, and now Stelara. I'm taking Stelara off label. My rheumatologist indicated that the studies show that 75% of AS sufferers had good results in the first 90 days. Not much after that. I'm not sure if Stelara is even working right now. There's a new pain near my shoulder blades with lower back and si pain.

Top
Page 2 of 2 < 1 2

Moderator:  Megan, WendyR 
Who's Online
0 registered (), 97 Guests and 4 Spiders online.
Key: Admin, Global Mod, Mod
Recent Posts
What do you feel I really have?
by Magician
11/12/17 01:25 AM
Intense Crying (or Laughter) cures
by Robin_H
11/11/17 08:24 PM
Sport related Flare
by drone3
11/11/17 07:19 AM
Starch binge followed by antimicrobial experience
by Robin_H
11/10/17 02:23 AM
connecting tissue disorder
by jay_bharat
11/10/17 01:34 AM
Damage due to scoliosis mistaken for AS?
by Leonila
11/09/17 06:09 AM
The diet that will beat arthritis
by jay_bharat
11/08/17 10:08 PM
(Views)Popular Topics
"FITNESS" TEAM! - All Physical Activity & Sports 35,531,308
hmmm 1,814,554
Has anyone had Pedicle subtraction Osteotomy ? 1,532,031
What to do about healthcare? Can it be fixed? 1,002,049
User names revisited 865,503
Medicinal Marijuana 784,649
A.S and beds, What do you find best? 768,262
OMG!!!! 721,095
No/Low Starch Diet Success Stories 532,378
THE STARCH CONTENT OF FOODS - THE LIST 426,856