2

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Anyone on TNF-blocking drugs?

Answered on August 19, 2014
Created November 22, 2010 at 12:40 AM

I have ankylosing spondylitis (5 years - now 35). I've been on NSAIDs 2xday for 3 years and Humira for 1 1/2 years. I'm just wondering if there's any way to recover WHILE on these immune-suppressing drugs? I can't quit them because the pain would be disabling.

Just curious if anyone has been actually able to go drug free after this level of medication?

My symptoms also include chronic constipation (5 years...every single day). Nothing has seemed to improve this. Two gastro docs both described "functional constipation." For a very thin, tall person, they said something about my colon being very long and a possible slight twist. A couple of places where the muscle tone was weak. No obvious celiac signs (just "grey" area - not positve or negative). Very frustratingly little to work with.

Thanks for any advice for those who have been in autoimmune heck.

Medium avatar

(3259)

on November 24, 2010
at 11:08 AM

My "sleep cocktail" - low light in the evening, a cup of Natural Calm (magnesium citrate), minimal screen time after dinner, blackout curtains and a t-shirt covering the clock radio in the bedroom. 9 hours is the goal. Sounds pretty lame to my friends at the pub but a warrior's gotta do what he's gotta do... And you're right Lindy, "it is what it is". Not only that, "it" is you. Pain is part of who we are, and rejecting or trying to ignore it is denying an important part of what shapes us. I've learned a lot of beautiful things from pain - it's shaped who I am for better, I think.

B1076248dde479773e75044818e1878c

(458)

on November 23, 2010
at 10:18 PM

It'll be interesting to see what Cordain finds with those of us struggling with major autoimmune issues. Meanwhile, I like the strategy of saying, "It is what it is" and doing the best we can with that. Also good is bouncing ideas off each others. I'm liking the extra sleep suggestion, and I'm going to add this to the solution cocktail. :)

Medium avatar

(3259)

on November 23, 2010
at 08:22 PM

If the "treatment" is ibuprofen, MDs are great! I go to my alternative practitioners to fix what MDs have done to me. -Chris

Medium avatar

(3259)

on November 23, 2010
at 07:25 PM

Natural Calm (magnesium) before bed...amazing.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on November 23, 2010
at 07:23 PM

Yeah...you know who's really bad at treating chronic pain? MDs. Give me a clever nutritionist, physiatrist, or science geek any time.

Medium avatar

(3259)

on November 23, 2010
at 07:20 PM

Totally agree. My chiropractor and osteopath are gods. Chris

990472da245e34f25e47af5d270b7a4b

(188)

on November 23, 2010
at 12:50 AM

I've been off grains for over 2-3 month stretches without seeing major improvements.

8564091e3cf82ea53843c0dbcf57857a

(990)

on November 22, 2010
at 09:35 PM

Yes love that blog. Not too many updates lately, but tons of good info!

990472da245e34f25e47af5d270b7a4b

(188)

on November 22, 2010
at 07:55 PM

Thanks for the response. I'm currently looking at this blog: http://coolinginflammation.blogspot.com/ I think he's very similar!

990472da245e34f25e47af5d270b7a4b

(188)

on November 22, 2010
at 07:54 PM

I keep hearing about magnesium. I think I'll add this - makes sense! Thanks!

990472da245e34f25e47af5d270b7a4b

(188)

on November 22, 2010
at 07:53 PM

Thanks, Chris! I needed to read this. Perhaps you've been down this road longer, but I think you've got the right attitude...acceptance but always striving for optimal. I signed up to do the Cordain study in a couple weeks. Going to keep on track now. It's just good to hear from another warrior-AS'er. :)

93f44e8673d3ea2294cce085ebc96e13

(10502)

on November 22, 2010
at 02:15 AM

Are you eating grains?

  • B1076248dde479773e75044818e1878c

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6 Answers

2
8564091e3cf82ea53843c0dbcf57857a

(990)

on November 22, 2010
at 02:27 AM

Hi Lindy,

You might want to do some research into the Specific Carbohydrate Diet. A lot of people with autoimmune illness (mostly IBD like Ulcerative Colitis, Crohn's, Celiac) have managed to wean off drugs similar to the ones you're on. It is always suggested to change diet first while remaining on drugs. Then, once you're stable you can work with your doctors to slowly wean off them.

SCD is very close to paleo (no grains, no sugar, no potatoes), but with emphasis on starting with more healing and easy to digest foods. Lots of broth in the beginning is important. Also most will try the 24-hour fermented yogurt which provides probiotics, but I've heard people with ankylosing spondylitis have done better without the yogurt.

The main SCD website is: http://www.breakingtheviciouscycle.info/

There's a Yahoo Groups forum for it at http://health.groups.yahoo.com/group/BTVC-SCD/ There have been a few posts about ankylosing spondylitis in the yahoo group, try putting that in the search and you'll get a list of messages.

Also this might help with constipation: http://www.pecanbread.com/new/coprotocol.htm

I don't buy into the "functional" bowel troubles. I was told once that I had functional IBS while all along it was Celiac. I also suggest get off gluten completely if you have any digestive troubles, regardless if you have a test showing Celiac.

8564091e3cf82ea53843c0dbcf57857a

(990)

on November 22, 2010
at 09:35 PM

Yes love that blog. Not too many updates lately, but tons of good info!

990472da245e34f25e47af5d270b7a4b

(188)

on November 22, 2010
at 07:55 PM

Thanks for the response. I'm currently looking at this blog: http://coolinginflammation.blogspot.com/ I think he's very similar!

1
21fd060d0796fdb8a4a990441e08eae7

(24543)

on November 23, 2010
at 07:14 PM

Lindy-- after a while on paleo, my pain has not changed one iota. But I think about things a little differently now. For a long time, I was on various opiods (vicodin, oxycontin, etc), and just about ready to give up. BUT...

...there was something missing from the equation. That variable is time. Some of us have genetic impairments that will not disappear, that predispose the body to producing a chronic pain signal or overperceiving this signal. But various books have pointed out that it takes a multifactorial, prolonged approach to lessen pain enough to reduce/eliminate meds. After almost 30 years of standard eating, I'm hopeful that it might take a while longer to get an impact from eating paleo.

Plus there's a trillion other things to try. I tried to make a spreadsheet of all the things I've tried or looked into, and the sheer volume is promising. Have you tried--low level laser, TENS units, ketamine infusions, biofeedback, platelet rich plasma injections, blah blah blah? I so totally sympathize with you, and wish that there was a good meetup type group for paleo pain people around. (maybe a little too much to ask for!)

21fd060d0796fdb8a4a990441e08eae7

(24543)

on November 23, 2010
at 07:23 PM

Yeah...you know who's really bad at treating chronic pain? MDs. Give me a clever nutritionist, physiatrist, or science geek any time.

Medium avatar

(3259)

on November 23, 2010
at 08:22 PM

If the "treatment" is ibuprofen, MDs are great! I go to my alternative practitioners to fix what MDs have done to me. -Chris

Medium avatar

(3259)

on November 23, 2010
at 07:20 PM

Totally agree. My chiropractor and osteopath are gods. Chris

1
Medium avatar

(3259)

on November 22, 2010
at 03:23 PM

Hey Lindy,

Autoimmune heck is where I generally hang out. I've had AS since I was about 13, diagnosed at 18, and am going strong at 40. Strict Paleo, in my experience, is the only way I can eat. I started with Carol Sinclair's book "The IBS Low-Starch Diet" (I don't have IBS, but she applies it equally to AS), moved to Prof Cordian's Paleo books, and now devour any info I can get - the best recently being Robb Wolf's book and podcast.

Can you heal while on meds? I believe you can, it just depends what you mean by "heal". I don't think the underlying damage that inflammation has wrought can be undone - there will always be a certain background level of pain that you or I may require medication to deal with (no shame in that). Paleo has the potential to heal your gut, which is the gateway for all kinds of inflammation and other nasty things. I've come on and off meds over the years and am now still taking Celebrex. Does that mean I'm not healing or that Paleo isn't working? Not in my experience. I slowly allowed starch and non-paleo foods (including a ton of beer this summer) back into my diet and the consequences were disastrous. Major frequent flares that kept me off work and doing the things I love. Not to mention gaining about 15 unwanted pounds, which is killer for people with arthritis. I've been very strict for about 6 weeks and have dropped the 15lbs, have tons of energy, and pain is manageable. I will never let those foods creep back in again - it really scared me straight.

Whether paleo ever puts my AS into remission is actually immaterial to me. It would obviously be wonderful, but the many other benefits that paleo brings (leanness, energy, metabolic regulation, cardiovascular health, wicked sleep, and lower systemic inflammation) are enough to convince me. It minimizes my pain and keeps flares at bay. I'm able to sail, work out with weights, play ice hockey, and ride my road bike. I believe my diet has everything to do with that.

I think the only way you'll ever know is to go as strict as you can for as long as you can - the recommended 30 days isn't long enough for people like you and I to see major changes in pain and inflammation. I'd be happy to share any experience I have or resources that have worked for me.

Best of luck, Chris

990472da245e34f25e47af5d270b7a4b

(188)

on November 22, 2010
at 07:53 PM

Thanks, Chris! I needed to read this. Perhaps you've been down this road longer, but I think you've got the right attitude...acceptance but always striving for optimal. I signed up to do the Cordain study in a couple weeks. Going to keep on track now. It's just good to hear from another warrior-AS'er. :)

1
95601768ec9cb75cc3a9cbcd2271ed14

(2206)

on November 22, 2010
at 02:53 AM

My sister has AS so I have some idea of how crappy it can be. I obviously can't say with confidence that a primal/paleo diet would cure it, but I am certain that it wouldn't be harmful, if that is what you are asking. I've been recommending it to her for a while now. It may not totally reduce the needs for meds, but since it is anti-inflammatory it should hopefully cut down on your need for NSAIDs over time. Also, my step-dad is on Humira for RA and has noticed that it affects his blood glucose levels, so eating a diet like this could help mediate any long term damage that consistent med-induced high blood glucose may have.

Anecdotally, while obviously never approaching the levels of pain that AS can induce, I have noticed a marked decrease in my once previously ever-present back pain since going paleo, as well as a noticeable reduction in the size/painfulness of the many osteophytes i have on my feet and fingers. This could bode well for you, I think. If you aren't supplementing with magnesium (citrate is well absorbed) and D3, I suggest that you start. There have been studies suggesting that deficiencies in these can accelerate bone loss and AS. (example: study about D3)

Foremost, I wish you luck in your quest for health!

ETA: If you haven't yet checked this previous question out, you might want to. It has a lot of good info.

990472da245e34f25e47af5d270b7a4b

(188)

on November 22, 2010
at 07:54 PM

I keep hearing about magnesium. I think I'll add this - makes sense! Thanks!

Medium avatar

(3259)

on November 23, 2010
at 07:25 PM

Natural Calm (magnesium) before bed...amazing.

0
089dd41b18fbb95ebb5347cded708d98

(5635)

on January 18, 2013
at 05:11 AM

i just started humira for my ulcerative colitis but i will still follow paleo just to really heal my gut and not just destroy my immune system. it was a hard decision, but one can only struggle so long without medical intervention.

0
Medium avatar

(3259)

on November 23, 2010
at 02:19 PM

That's great Lindy. I'm hoping to take part in the Cordain study too. Best of luck keeping on track and being strict. My guess is that you'll start to feel better overall within a week or so. The pain and inflammation is another story. I'm not sure when (if) my pain will respond to a strict diet - I have in spades in the past and was even able to go off medication entirely for 5 years. Hopefully joint degradation hasn't progressed too far.

I mentioned it above, but want to stress how important it is for me (and probably you too): SLEEP!! For everyone, but especially for people with chronic pain, adequate healthy sleep is critical. I'm just learning that lesson now. As I'm sure you know, laying down for hours basically sucks when you have AS. In many ways, I would rather be awake and moving for the rest of my life than face waking up with pain and stiffness. I jump in bed like a healthy, athletic 40-year-old and wake up a 90-year-old man (I must have hit the "time machine" button on my clock radio by mistake!). I've averaged 5 to 7 hours of poor quality sleep per night for most of my life. After reading "Lights Out: Sleep, Sugar, and Survival", I began working up to 9.5 hours in a blacked-out room (zero light coming in from outside or electronics). It's made a major difference in my AS, not to mention weight, body composition, and ability to cope with life in general. Robb Wolf covers this in his new book too.

Enough proselytizing. I'm interested in knowing how things go, so keep us posted.

Chris

B1076248dde479773e75044818e1878c

(458)

on November 23, 2010
at 10:18 PM

It'll be interesting to see what Cordain finds with those of us struggling with major autoimmune issues. Meanwhile, I like the strategy of saying, "It is what it is" and doing the best we can with that. Also good is bouncing ideas off each others. I'm liking the extra sleep suggestion, and I'm going to add this to the solution cocktail. :)

Medium avatar

(3259)

on November 24, 2010
at 11:08 AM

My "sleep cocktail" - low light in the evening, a cup of Natural Calm (magnesium citrate), minimal screen time after dinner, blackout curtains and a t-shirt covering the clock radio in the bedroom. 9 hours is the goal. Sounds pretty lame to my friends at the pub but a warrior's gotta do what he's gotta do... And you're right Lindy, "it is what it is". Not only that, "it" is you. Pain is part of who we are, and rejecting or trying to ignore it is denying an important part of what shapes us. I've learned a lot of beautiful things from pain - it's shaped who I am for better, I think.

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