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#505576 - 08/01/14 01:43 PM AS sufferers using Stelara?
Chaka Offline
New_Member

Registered: 03/24/13
Posts: 9
Hi All -

I did my second loading dose of Stelara (see my sig for my history) about a week ago and am curious to know if anyone else out there has tried Stelara to treat their AS?

I haven't noticed a major difference yet. But I also don't feel worse, which I consider a win. No pain with this injection (unlike my beloved humira).

I think partly why I can't tell if anything has happened is because I started doing an autoimmune protocol/paleo diet back at the end of May and it has been an absolute miracle for me. Today, I'm at about 95% feeling great (as compared to me best day on humira).

(I searched "stelara" on these forums and the most recent post is from December, I believe. It relates to Express Scripts no longer covering Stelara. For the record, I get my Stelara provided through Express Scripts.)
_________________________
*****
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
#505584 - 08/01/14 06:29 PM Re: AS sufferers using Stelara? [Re: Chaka]
Tnate Offline
Fifth_Degree_AS_Kicker

Registered: 10/06/08
Posts: 360
Loc: South Florida
Are you expected to get to the 100% mark? 95% is better than in the negative I guess. I'm sure it will grow on u!


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#505604 - 08/02/14 07:17 PM Re: AS sufferers using Stelara? [Re: Tnate]
Tnate Offline
Fifth_Degree_AS_Kicker

Registered: 10/06/08
Posts: 360
Loc: South Florida
Chaka - how long does a flush/infusion of this stuff take to work? Any idea?

This 1 seems to kind of do a lot too.

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#505676 - 08/05/14 02:30 PM Re: AS sufferers using Stelara? [Re: Tnate]
Chaka Offline
New_Member

Registered: 03/24/13
Posts: 9
As far as getting Stelara into your system, it takes about as long as any of the TNF pens. It's a prefilled syringe that you stick in your thigh and that's it.

To actually see results? Absolutely no clue. That's what I was asking! lol.

Since Stelara isn't actually prescribed for AS, my doctors have not offered up any sense of what I can expect from it. They're definitely in "throwing stuff at the wall and seeing what sticks" mode.

My findings after reading through Stelara discussions in psoriasis forums tells me that it's a couple months to notice efficacy (at second loading dose, one month in, they notice some clearance).

My experience? No idea. No earthly idea. I can't tell if it's helping much at all because the diet has been so effective. Maybe since I did the second loading dose the pinch in my back has dissipated? But that could just be me having a good day too.
_________________________
*****
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
#505677 - 08/05/14 02:34 PM Re: AS sufferers using Stelara? [Re: Tnate]
Chaka Offline
New_Member

Registered: 03/24/13
Posts: 9
Lol!!!

re: 100% mark. So my baseline 100% is my best day on Humira. Not 100% in life. I don't think I'll ever again feel as good as I did before I went to college (and AS kicked in). That's a pipe dream.

That's my thinking, I'll try it out for a year see what happens. As long as it doesn't give me new autoimmune conditions (like the humira did), I'm doing fine.

I'm so relaxed about this at this moment because this AIP diet is an honest to god miracle for me. I cannot believe it. It feels great to take so much of my wellness into my own hands. Such a sense of power (and relief seeing as how I have a heard time trusting my doctors).
_________________________
*****
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
#506095 - 08/27/14 08:31 PM Re: AS sufferers using Stelara? [Re: Chaka]
CTPE Offline
New_Member

Registered: 09/16/13
Posts: 5
How is the stelara going? I want to try it because all of the other drugs give me neuropathy.

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#506498 - 09/17/14 09:43 AM Re: AS sufferers using Stelara? [Re: Chaka]
Chaka Offline
New_Member

Registered: 03/24/13
Posts: 9
Hi there, CTPE. I have taken two loading doses (second at the end of july) and am not due to inject again until the end of October.

As far as injection experience? I've had no issues. In fact, I find it more pleasant than the humira/enbrel pen.

As far as side effects? I've had no issues.

As far as efficacy? TENTATIVELY: I have not noticed any effectiveness.

I stopped taking humira at the end of April (and didn't start Stelera until the beginning of July). After I stopped, all my rheum issues returned fully including the psoriasis I experience on my scalp.

The stelara has not helped even clear my scalp (which is what it is traditionally prescribed for). Which, is why I say TENTATIVELY. If it was helping lessen the psoriasis but not the AS, then I would say it wasn't working for me. So I will continue to try this for at least another couple injections (so for another 6 months at least).

(I continue to be on an autoimmune paleo diet, which has evened out to be about 70% helpful. I am fully aware that the Stelara is not helping the AS because when I deviate at all from the diet, my back catches fire soon after.)
_________________________
*****
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
#506548 - 09/20/14 01:52 AM Re: AS sufferers using Stelara? [Re: Chaka]
Tnate Offline
Fifth_Degree_AS_Kicker

Registered: 10/06/08
Posts: 360
Loc: South Florida
I wanna try this diet but am so accustomed to my AS management methods that I have employed religiously for the last 5 years that proved effective at keeping my extremely severe AS under some type of control. Paradoxically, exercise has not been helping as it has since before my last colon scope. So I want to see if this diet would help change my un-characteristic AS symptoms. I figured I should stick with my system which was tried and true but I'm willing to try diet if I could just do it. I'm not even opposed to it and will probably stick with it if I have any success with it but I have tried implementing it numerous times and have failed miserably because I get EXTREMELY hungry as an athlete. I think I need a lapband or an eating disorder clinic. And I really wonder if I can keep my strength on this carb/fat starvation diet. Hell I'm less worried about the difficulty of it as I am with the nutrition aspects of it. I don't really care what I have to do at this point... All I want is some control over my life so I can pursue my tennis career(pretty positive I can go pro if I get rid of this geralitis!). I only have a few years left... And a long ACL recovery. I'm willing to do anything really, all I want is my health for the next 6 years...

I've done it before but I wasn't doing sugars or anything. I wasn't even doing olive oil. I have fasted for 12 days once (lost 30 lbs). It took like 3 months to get my body right from that. And I did that diet when I wasn't so good with exercise for about 30 days but that was about 8 years ago.

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#506721 - 09/26/14 09:10 AM Re: AS sufferers using Stelara? [Re: Chaka]
CTPE Offline
New_Member

Registered: 09/16/13
Posts: 5
Thanks for the update. Please keep me posted on its efficacy.

Top
#506796 - 09/29/14 06:13 AM Re: AS sufferers using Stelara? [Re: Chaka]
Bax1 Offline
Apprentice_AS_Kicker

Registered: 08/26/13
Posts: 82
I'm very curious and hopeful that this drug will work. I'm gonna try this paleo AIP. I went and a 5 day water fast followed by a juice fast. Then no starch. I felt worse than I ever have after that. All I wanted to do is sleep. I was like a walking zombie. Brain fog and no energy. I hope this drug kicks in for you.

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#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

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#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
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