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Perfect supplement combo to substitute for Humira

supplements ulcerative colitis crohns immune defficiency immunosuppressants tnf inhibitors turmeric fish oil

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#1 Josh B

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Posted 06 December 2013 - 02:48 AM


Hello, I recently stumbled upon this site and i am completely shocked i had not found it sooner. Anyways, I am 17 and have been suffering from Ulcerative Colitis for several years now. As of now i do not have any symptoms gastronomically speaking but i have been suffering from chronic joint pains that migrate from my hips to knees to heels. The gastro says its linked to my UC and the aromatologist also says that even though im not having symptoms in my bowels other than slight constipation, that my joint pain must be associated with the UC and so the UC must be treated more aggressively. I am now at the point where my doctor is going to put me on Humira after fighting him for a year. I love research and have tried almost everything besides TNF inhibitors. I decided that while i wait for the insurance to clear the Humira i would like to experiment with a few "natural" sources of TNF inhibitors.
I would take :
Fish oil
Turmeric
Tart cherry juice
COQ10
Milk Thistle
Stinging Nettle
Ginger
Green tea
With appropriate dosage does there to seem to be an issue with this combination of supplements. Does anyone have any advice on what to take? I think TNF inhibition is the only way to go right now but i may be wrong. I just want to get back into doing sports and this has really hurt me mentally and physically.

#2 Dolph

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Posted 06 December 2013 - 08:32 AM

Uh, that seems like trying to replace heroin with an aspirin to me. Don't get me wrong, some(!) of these supplements might(!) have a slight impact on disease activity, but they just can't be compared with biologiclas like Humira.
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#3 nowayout

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Posted 06 December 2013 - 11:30 AM

Nothing compares to the biologicals with regards to effectiveness and they really are very safe compared to most drugs on the market for almost anything, despite the scary-sounding warnings. Self-injecting is a breeze. You have to take into account also that your disease progression will take its toll in the form of permanent joint damage and possibly permanent gastrointestinal damage unless you treat it aggressively. I do understand your fear (my sister is right now at the same stage) but if I were you, I would take the plunge instead of dithering. You'll almost certainly be glad you did.

I am on Enbrel for a related condition. For a couple of years I tried all that other stuff and for me none of them made any significant difference, compared to the dramatic difference the biological did.

Good luck.

Edited by nowayout, 06 December 2013 - 11:31 AM.


#4 Josh B

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Posted 06 December 2013 - 09:30 PM

Thank you guys for the prompt replies. I am worried about taking Humira but I think I will just waitto take it when the insurance goes through which is about 1 week from now. I've had the joint pains for a year now, some days worse than others. That's why I'm really worried about tissue scarring and joint damage. Do you think 1 year of chronic inflammation ia long enough to do irreversible or permanent damage?
Also, are there any supplements that i should take since UC is known to be caused by or cause some vitamin deficiencies. In addition, there are some probiotics that I have tried to help but are there any that I should really look into because my research hasn't proved to effective.
I appreciate any answers.

Edited by Josh B, 06 December 2013 - 09:35 PM.


#5 niner

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Posted 06 December 2013 - 10:38 PM

It's been shown that Crohn's patients have significantly higher levels of oxidative stress than controls, and that it is worse in active disease than when in remission. (UC and Crohn's are different flavors of IBD, but they have similar characteristics.) One of the consequences of the increased oxidative stress is a higher level of damage to cellular lipids, primarily peroxidation. There are two supplements that I'd consider in this case. The first is c60-olive oil, a potent and long-lasting membrane-resident antioxidant. The other is a stabilized phospholipid replacement therapy called NT Factor.

#6 nowayout

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Posted 07 December 2013 - 12:03 AM

Isn't it a little premature to be recommending C-60 for various diseases? We know practically nothing of what C-60 does in the body and in particular how it would affect the immune system in autoimmune conditions.

#7 Josh B

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Posted 07 December 2013 - 01:30 AM

Im not sure about C60 but i think i will try the NT factor. I've done some research and it seems quite effective for increasing healing to optimize health. Thank you for showing me.

#8 zorba990

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Posted 07 December 2013 - 01:55 AM

Consider taking sodium butyrate
Oral administration of sodium butyrate attenuates inflammation and mucosal lesion in experimental acute ulcerative colitis

http://www.ncbi.nlm....pubmed/21658926
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#9 niner

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Posted 07 December 2013 - 03:48 AM

Isn't it a little premature to be recommending C-60 for various diseases? We know practically nothing of what C-60 does in the body and in particular how it would affect the immune system in autoimmune conditions.


There's nothing wrong with being cautious. There are already a number of people with autoimmune conditions using c60, and I'm not aware of any problems, but there's no telling if someone has had a bad experience with it that we're not aware of. If I were in Josh's position, I would try all of the things that I suggested. Unless I experienced a substantial reduction in symptoms, I would also try the anti-tnf Mab. The butyrate that zorba mentioned is interesting. It's found in real butter, from whence its name derives.
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#10 Bateau

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Posted 07 December 2013 - 04:09 AM

Andrographis Paniculata - 1.8 grams daily. Unfortunately HMPL-004 doesn't seem to be for sale

BACKGROUND:Andrographis paniculata is an herbal mixture used to treat inflammatory diseases. An extract of the herb, HMPL-004, inhibits TNF-α and IL-1β, and prevents colitis in animal models.
AIM: To determine the efficacy and safety of HMPL-004 in patients with mild-to-moderate ulcerative colitis.
METHODS: A randomised, double-blind, multicentre, 8-week parallel group study was conducted using HMPL-004 1200 mg/day compared with 4500 mg/day of slow release mesalazine (mesalamine) granules in patients with mild-to-moderately active ulcerative colitis. Disease activity was assessed at baseline and every 2 weeks for clinical response, and at baseline and 8 weeks by colonoscopy.
RESULTS: One hundred and twenty patients at five centres in China were randomised and dosed. Clinical remission and response were seen in 21% and 76% of HMPL-004-treated patients, and 16% and 82% of mesalazine-treated patients. By colonoscopy, remission and response were seen in 28% and 74% of HMPL-004-treated patients and 24% and 71% of mesalazine-treated patients, respectively. There was no significant difference between the two treatment groups.
CONCLUSION: HMPL-004 may be an efficacious alternative to mesalazine in ulcerative colitis

OBJECTIVES: Andrographis paniculata has in vitro inhibitory activity against TNF-α, IL-1β and NF-κB. A pilot study of A. paniculata extract (HMPL-004) suggested similar efficacy to mesalamine for ulcerative colitis.
METHODS: A randomized, double-blind, placebo-controlled trial evaluated the efficacy of A. paniculata extract (HMPL-004) in 224 adults with mild-to-moderate ulcerative colitis. Patients were randomized to A. paniculata extract (HMPL-004) 1,200 mg or 1,800 mg daily or placebo for 8 weeks.
RESULTS: In total, 45 and 60% of patients receiving A. paniculata 1,200 mg and 1,800 mg daily, respectively, were in clinical response at week 8, compared with 40% of those who received placebo (P=0.5924 for 1,200 mg vs. placebo and P=0.0183 for 1,800 mg vs. placebo). In all, 34 and 38% of patients receiving A. paniculata 1,200 mg and 1,800 mg daily, respectively, were in clinical remission at week 8, compared with 25% of those who received placebo (P=0.2582 for 1,200 mg vs. placebo and P=0.1011 for 1,800 mg vs. placebo). Adverse events developed in 60 and 53% of patients in the A. paniculata 1,200 mg and 1,800 mg daily groups, respectively, and 60% in the placebo group.
CONCLUSIONS: Patients with mildly to moderately active ulcerative colitis treated with A. paniculata extract (HMPL-004) at a dose of 1,800 mg daily were more likely to achieve clinical response than those receiving placebo



Other ways to get butyrate are through soluble fiber and butter (butter is ~3-4% butyrate by weight). Supplementing soluble fiber does something, but you'll want a diet high in soluble fiber as well and just maybe with some butter (hopefully grass-fed organic).

OBJECTIVE: Butyrate enemas may be effective in the treatment of active distal ulcerative colitis. Because colonic fermentation of Plantago ovata seeds (dietary fiber) yields butyrate, the aim of this study was to assess the efficacy and safety of Plantago ovata seeds as compared with mesalamine in maintaining remission in ulcerative colitis.

METHODS: An open label, parallel-group, multicenter, randomized clinical trial was conducted. A total of 105 patients with ulcerative colitis who were in remission were randomized into groups to receive oral treatment with Plantago ovata seeds (10 g b.i.d.), mesalamine (500 mg t.i.d.), and Plantago ovata seeds plus mesalamine at the same doses. The primary efficacy outcome was maintenance of remission for 12 months.
RESULTS: Of the 105 patients, 102 were included in the final analysis. After 12 months, treatment failure rate was 40% (14 of 35 patients) in the Plantago ovata seed group, 35% (13 of 37) in the mesalamine group, and 30% (nine of 30) in the Plantago ovata plus mesalamine group. Probability of continued remission was similar (Mantel-Cox test, p = 0.67; intent-to-treat analysis). Therapy effects remained unchanged after adjusting for potential confounding variables with a Cox's proportional hazards survival analysis. Three patients were withdrawn because of the development of adverse events consisting of constipation and/or flatulence (Plantago ovata seed group = 1 and Plantago ovata seed plus mesalamine group = 2). A significant increase in fecal butyrate levels (p = 0.018) was observed after Plantago ovata seed administration.
CONCLUSIONS: Plantago ovata seeds (dietary fiber) might be as effective as mesalamine to maintain remission in ulcerative colitis.



Last but [maybe] not least, Curcumin, which you have already with both turmeric and ginger but if I was you id remove both of those for a true curcumin extract (usually paired with piperine but Im not positive P-gp inhibition is desired here):

Curcumin, a natural compound used as a food additive, has been shown to have anti-inflammatory and antioxidant properties in cell culture and animal studies. A pure curcumin preparation was administered in an open label study to five patients with ulcerative proctitis and five with Crohn's disease. All proctitis patients improved, with reductions in concomitant medications in four, and four of five Crohn's disease patients had lowered CDAI scores and sedimentation rates. This encouraging pilot study suggests the need for double-blind placebo-controlled follow-up studies.

BACKGROUND & AIMS: Curcumin is a biologically active phytochemical substance present in turmeric and has pharmacologic actions that might benefit patients with ulcerative colitis (UC). The aim in this trial was to assess the efficacy of curcumin as maintenance therapy in patients with quiescent ulcerative colitis (UC).
METHODS: Eighty-nine patients with quiescent UC were recruited for this randomized, double-blind, multicenter trial of curcumin in the prevention of relapse. Forty-five patients received curcumin, 1g after breakfast and 1g after the evening meal, plus sulfasalazine (SZ) or mesalamine, and 44 patients received placebo plus SZ or mesalamine for 6 months. Clinical activity index (CAI) and endoscopic index (EI) were determined at entry, every 2 months (CAI), at the conclusion of 6-month trial, and at the end of 6-month follow-up.
RESULTS: Seven patients were protocol violators. Of 43 patients who received curcumin, 2 relapsed during 6 months of therapy (4.65%), whereas 8 of 39 patients (20.51%) in the placebo group relapsed (P=.040). Recurrence rates evaluated on the basis of intention to treat showed significant difference between curcumin and placebo (P=.049). Furthermore, curcumin improved both CAI (P=.038) and EI (P=.0001), thus suppressing the morbidity associated with UC. A 6-month follow-up was done during which patients in both groups were on SZ or mesalamine. Eight additional patients in the curcumin group and 6 patients in the placebo group relapsed.
CONCLUSIONS: Curcumin seems to be a promising and safe medication for maintaining remission in patients with quiescent UC. Further studies on curcumin should strengthen our findings.


(can't post links due to new membership - sorry)

Edited by Bateau, 07 December 2013 - 04:15 AM.


#11 Josh B

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Posted 07 December 2013 - 11:52 AM

I forgot too add that I am currently taking fish oil and Apriso. Also as a note, I have had some off liver enzyme elevations. It would go up a lot and then back down to normal and I didn't change my consumption of anything at all. Any reasons for that? Thats why I was considering taking milk thistle.

#12 Josh B

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Posted 07 December 2013 - 08:28 PM

I statted the NT factor today and I will see how it goes and respond back if anything. I'm still on the edge of taking turmeric again. I took it in the past(Organic India:turmeric) and it seemed to make my pains worse so I stopped taking it. It seems thay it made my joints very stiff. I'm not sure if it might have been the brand itself or just the combination of turmeric, fish oil, and apriso.
Any ideas on what I should do? I was considering the Androgaphis but some say it may caused elevation of liver enzymes? Is it just one of those very uncommon side effects or should weigh the risk heavily.

#13 opales

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Posted 11 December 2013 - 12:31 PM

Lecithin is in my opinion the most promising. I am not sure if that is the active substance in NT Factor, but even if it was, the dose is likely to be too low. Results with delayed release lecithin have been phenomenal

Expert Opin Investig Drugs. 2010 Dec;19(12):1623-30. doi: 10.1517/13543784.2010.535514.
Delayed release phosphatidylcholine as new therapeutic drug for ulcerative colitis--a review of three clinical trials.

Stremmel W, Hanemann A, Braun A, Stoffels S, Karner M, Fazeli S, Ehehalt R.

Source

University Hospital Heidelberg, Department of Gastroenterology, Im Neuenheimer Feld 410, 69120 Heidelberg, Germany. wolfgang_stremmel@med. uni-heidelberg.de


Abstract


IMPORTANCE OF THE FIELD:

As the pathogenesis of ulcerative colitis (UC) is unknown, a causative therapy is lacking. Therefore, some UC patients suffer from disease activity despite symptomatic anti-inflammatory treatment strategies. We claim that reduction of phosphatidylcholine (PC) in colonic mucus impairs the mucosal barrier and, thus, causes attacks of the commensal bacterial flora to induce colitis. Thus, mucus PC substitution could provide a causal therapy for UC.
AREAS COVERED IN THIS REVIEW:

A delayed released oral PC preparation (rPC) was found to substitute for the lack of PC in rectal mucus. In non-steroid-treated active UC, 53% of rPC-treated patients reached remission compared with 10% of placebo patients (p < 0.001). In a second trial with chronic-active, steroid-dependent UC patients, steroid withdrawal with a concomitant achievement of remission (CAI ≤ 3) or clinical response (≥ 50% CAI improvement) was reached in 15 rPC-treated patients (50%) but only in 3 (10%) placebo patients (p = 0.002).
WHAT THE READER WILL GAIN:

The concept that missing PC in colonic mucus is the main pathogenetic factor for development of UC. PC can be substituted by rPC, which cures the disease in the majority of patients.
TAKE HOME MESSAGE:


rPC is, to our knowledge, the first causative therapeutic option for patients with UC.


The delayed release lecithin used in the studies is apparently enteric coated soy lecithin in enteric capsules (high phosphatidylcholine concentration), to ensure that lecithin makes it to colon for topical effect. However, I am not at all convinced that using high dose regular lecithin granules would not work as well, because of increased systemic phosphatidylcholine and the fact that 10% of oral phosphatidylcholine is anyway excreted in feces.

J Lipid Res. 1982 Nov;23(8):1136-42.
Intestinal absorption of polyenephosphatidylcholine in man.

Zierenberg O, Grundy SM.

Abstract


The metabolic fate of 1 of 3H/14C-labeled dilinoleoglycerophosphocholine was studied in five patients after oral administration. The 3H label was in choline and 14C was in the two linoleic acid residues. More than 90% of both isotopes was absorbed from the intestine. Seventy to 90% of the 3H radioactivity in blood was linked to phosphatidylcholine (PC) whereas 14C was associated with both PC and nonpolar lipids. At peak activity, the 3H/14C ratio of plasma PC was twice that of oral PC; this suggests that most oral PC was hydrolyzed to lysolecithin before absorption. The mean maximum concentration in total blood volume was 20% of the administered dose for 3H and 28% for 14C. Examination of lipoproteins revealed that the specific activity of PC in high density lipoprotein (HDL) was 2 to 6 times higher than in apoB-containing lipoproteins, and to 2 to 20 times than that of red blood cells or total blood. Thus, absorbed PC seemingly was incorporated preferentially into the HDL fraction of plasma.


PMID: 7175371 [PubMed - indexed for MEDLINE]
Free full text


The percentage of excreted phosphatidylcholine is probably higher in active colitis due increased motility, and the 10% does not take into account what percent has been integrated into the colon mucus (which is what we want). There are no studies of plain lecithin for colitis in humans, but for horses (with pectin) with gastric ulceration it worked well:

Vet Rec. 2003 May 31;152(22):679-81.
Treatment of gastric ulceration in 10 standardbred racehorses with a pectin-lecithin complex.

Ferrucci F, Zucca E, Croci C, Di Fabio V, Ferro E.

Source

Institute of Veterinary Internal Medicine, Faculty of Veterinary Medicine, University of Milan, via Celoria 10, 20133 Milan, Italy.


Abstract

The severity of the erosive and ulcerative lesions of the squamous gastric mucosa in 10 standardbred racehorses in training was classified according to a standard scoring system. Each horse was then treated orally for 30 days with 50 g/100 kg bodyweight daily of a pectin-lecithin complex mixed into the feed. At the end of the period of treatment, the gastric lesions were re-evaluated gastroscopically and the scores were compared with those assigned at the previous evaluation. In three of the horses the gastric ulcerations had healed completely, and in six others the lesions had improved significantly.


Following paper is an excellent primer to the possible mechanisms:
http://www.ncbi.nlm....les/PMC1774597/

With lecithin, I would choose variety with sufficiently high in phosphatidylcholine, and start with low dosage and raise it daily as too high starting dose can really make things worse (serious stomach cramps).
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#14 Josh B

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Posted 12 December 2013 - 12:08 AM

Wow, thank you opales for the insight. This lecithin seems very promising. Do you know which form would be better to take: soy or sunflower?

#15 opales

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Posted 13 December 2013 - 08:58 AM

Wow, thank you opales for the insight. This lecithin seems very promising. Do you know which form would be better to take: soy or sunflower?


I would go with soy at this point, because it was to my understanding used in the studies but it probably does not matter (as phoshpolipid composition is very similar in both), unless of course you have sensitivity issues to either one. Egg lecithin might be better (or worse), because it has higher phosphatidylcholine content but on the other hand does not have any phosphatidylinositol which also might play some role:
http://www.ncbi.nlm..../pubmed/1289171

I am not expert on lecithin, but I read on this dubious commercial site below that some forms of soy lecithin granules (made from soy flour and liquid lecithin) have only 3% phosphatidylcholine, that would definitely be way too low for this purpose. Don't know if it is true but in any case it probably makes sense to check that the brand you buy has (at least) 20-35% phosphatidylcholine content:
http://www.bulkbarn....n-granules.html

#16 Josh B

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Posted 17 February 2014 - 03:13 AM

Hello again. I would just like to report that I am now Humira 40mL every two weeks. I waited a year and a half trying natural remedies left and right and nothing has brought the relief i am currently feeling. So for now i will try to do research on this medication and substitutes so that maybe i can get off of it in the future. If anyone has their doubts about the medicine, i did too, but not treating the problem effectively can lead to permanent damage and that was what i was afraid of. I had suffered from inflammation in my joints for over a year and not want to cause permanent scarring. So I hope that eases your doubts and i must include that I have had no side effects while taking it.

#17 niner

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Posted 17 February 2014 - 03:26 AM

I'm glad to hear you're feeling better, Josh. I know someone who is seriously debilitated because she was scared off by the warnings on the anti-tnf Mabs, a number of years back, and never used them. Now she can't rotate her neck anymore.

#18 Josh B

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Posted 17 February 2014 - 03:31 AM

That is truly terrible. I felt scared in the same way but my Aromatologist basically sat me down and had a heartfelt discussion. For once, i felt that a doctor TRULY understood and cared. I didn't feel like jus tanother patient to him and so did what he suggested not only because he told me to but because i had exhausted all other options.

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#19 Joe Cohen

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Posted 02 September 2014 - 12:28 PM

SUPPLEMENTS AND LIFESTYLE FACTORS THAT INHIBIT TNF-ALPHA
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Also tagged with one or more of these keywords: supplements, ulcerative colitis, crohns, immune defficiency, immunosuppressants, tnf inhibitors, turmeric, fish oil

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