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  1. #41
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    Quote Originally Posted by cubbieblue View Post
    These are the three best ones I remember from that one study.

    I have no idea if these are even commonly available, do you? Which one would you prefer, out of these and the diclofenac and the celebrex? I will ask for a script for one.
    I remember aceclofenac coming up as the clear winner overall, but I'd never heard of it. I brought up diclofenac, because I know it's OTC in Europe and is fairly benign, but it did not do as well as aceclofenac.

    My one friend with AS registered and is waiting to be approved so he can weigh in on this thread. He will probably say that his flares definitely did occur even on a decent dose of Mobic. Humira seems to completely squash the process though, compared to the NSAIDs which just suppress it a bit.
    Interesting. I'm still a little skeptical in my case, but I really have gotten very little in the way of redeeming value from NSAIDs.

    Very interesting that when your TSH is almost completely suppressed you haven't had a flare and vice versa. THe first thing my rheumy did was put me back on T4 and keep trying to jack the dose up, because so many of his patients have responded well to that. My TSH is between 2-3 without T4 and my T4/T3 is in the middle of the range. T4 dosage over 50mcg makes me hyper and will cause some anxiety issues in me, so I can't go up as high as he would like. This only gets my TSH down to around 1.
    Yeah, I tend to get palpitations with TSH below 1. (Obviously not due to TSH itself, but you get the idea.) Still, I really do think the TSH thing might be a coincidence.

    Have you ever tried jacking up your T & HGH to see what happens when you are having a flare? I've tried jacking up my T a bit (and I have been taking GHRP6+GRF since my reaction) to see what happens, and it doesn't seem to make a difference. Then of course we can revisit cortisol...but we don't have to do that now.
    I haven't. I can't afford to increase hGH, monetarily speaking, and if I raise T, I'm going to have to start worrying about estrogen control, which leads to another set of variables.

    What else are we missing?
    My instinct says that autoimmunity is highly likely to be involved. That makes me think that we should try to find a TNF-inhibiting compound that is a bit more benign than Humira and give it a try.

    Now my first reaction to this is curcumin. Lots of rodent studies have shown curcumin inhibits TNF substantially. However, in human clinical trials, curcumin has had oddly paradoxical effects on cytokines, and has increased IL-6 and IL-8, despite decreasing NF-kappaB activity, so this suggests hesitation might be in order before assuming curcumin inhibits TNF in humans as well. However, I just noticed (PMID: 21314329) appears to be in humans and the authors found that curcumin inhibited TNF. The only problem is that I can't get the full text, so it's hard to say much at all about it.

    On the other hand, in (PMID: 20438867), curcumin did not change TNF expression in gastric mucosa, but it's not clear if that has relevance to serum. Moreover, the dose used is highly unclear because they used a tumeric tablet.

    On the other hand still, it's not clear to me that the cancer trials are relevant, since IL-6 and IL-8 may have been reciprocally modulated by the cancer as well as curcumin.

    Know any other drugs offhand that strongly inhibit TNF at relevant concentrations?

  2. #42
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    Quote Originally Posted by Ex Dubio View Post
    Know any other drugs offhand that strongly inhibit TNF at relevant concentrations?
    Yeah pentoxifylline which is also very safe.

  3. #43
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    Quote Originally Posted by FunkOdyssey View Post
    Yeah pentoxifylline which is also very safe.
    I know of no other TNF-inhibitors.

    This drug looks extremely interesting. Askapatient only has 3 reviews on it - it must be rarely prescribed. The fact that it improves circulation really piques my interest.

    TRENTAL: Side effects, ratings, and patient comments

  4. #44
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    Differential DIagnosis for Non-articular Rheumatism/Regional Pain Sydromes (Fibromyalgia)
    Medscape: Medscape Access

    Of course the treatment section sucks. On the page before it mentions quinolones as a link, so someone somewhere is starting to catch on.

    What's interesting is if you go to a fibro board and starting asking how many people have taken quinolones the percentage is huge. Many of them also have chronic UTIs and other sorts frequent infections so the quins tend to be prescribed eventually.

  5. #45
    Senior Member djremix's Avatar
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    Quote Originally Posted by Ex Dubio View Post
    It's simply not that kind of pain. Muscle relaxants have worked well for me for TMJ and bruxism, in large part by reducing involuntary muscle movements, but even with months of taking them for TMJ, I never noticed any alteration of flare-ups or related pain.

    The problem here is that the shoulder pain, for example, is not neuropathy or neuralgia. It manifests exactly as tendinitis or tendinosis would, with inflammation and palpable heat when irritated, a strong guarding reflex, subjective sensation of instability, and progressively increasing pain with work.

    Even opiates aren't particularly useful here, since they do attenuate the pain, but do not remove the subjective sensation or weakness and/or guarding reflex.

    I do appreciate the advice, though.
    if you defienatly ruled out a nueropathy then above might not help so much.

    personally i would try a good practitioner of acupuncture. 2 or 3 sessions should tell you if that will work.
    probably better than going for drugs first at this point.

    good luck
    Currently remixing this old body!

  6. #46
    Senior Member adreno's Avatar
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    Quote Originally Posted by Ex Dubio View Post
    Know any other drugs offhand that strongly inhibit TNF at relevant concentrations?
    Holy Basil is the best damn anti-inflammatory I ever tried, including curcumin and NSAIDs.

    NAC, ALA and EGCG are also options.

  7. #47
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    Quote Originally Posted by FunkOdyssey View Post
    Yeah pentoxifylline which is also very safe.
    I got the impression that the benefits in reality did not match with the benefits on paper. Didn't a bunch of people -- yourself included -- experiment with the stuff a few months back? I gathered that results were underwhelming, albeit perhaps for different indications.

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    Quote Originally Posted by cubbieblue View Post
    Differential DIagnosis for Non-articular Rheumatism/Regional Pain Sydromes (Fibromyalgia)
    Medscape: Medscape Access

    Of course the treatment section sucks. On the page before it mentions quinolones as a link, so someone somewhere is starting to catch on.

    What's interesting is if you go to a fibro board and starting asking how many people have taken quinolones the percentage is huge. Many of them also have chronic UTIs and other sorts frequent infections so the quins tend to be prescribed eventually.
    Interesting. Very good link. I'm actually a bit surprised how bad of a match most of the conditions in the DDx are. AS, "Fibromyalgia", and "Non-articular Rheumatism" seem to be the only ones that come close, and judging by their discussion of AS, even that seems like a stretch in some ways.

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    Quote Originally Posted by Ex Dubio View Post
    I got the impression that the benefits in reality did not match with the benefits on paper. Didn't a bunch of people -- yourself included -- experiment with the stuff a few months back? I gathered that results were underwhelming, albeit perhaps for different indications.
    I don't know how many people tried it. Out of our small group there is at least one success story, Kimber, who likes it very much. In my case, while taking it for a few weeks, my fingernail beds started getting inflamed and one of them developed into a full blown bacterial infection that swelled up my entire finger tip until I got on antibiotics. It seemed like it was significantly immunosuppressive in a way that wasn't doing me any favors.

    YMMV

  10. #50
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    Quote Originally Posted by Ex Dubio View Post
    Interesting. Very good link. I'm actually a bit surprised how bad of a match most of the conditions in the DDx are. AS, "Fibromyalgia", and "Non-articular Rheumatism" seem to be the only ones that come close, and judging by their discussion of AS, even that seems like a stretch in some ways.
    That's the whole problem. When faced with this sort of problem the medical community has no freaking clue what to do except diagnose fibro, slap a script for NSAIDs in your hand and tell ya to come back in 6 months.

    Anyone here have a good reference for understanding the difference between TNF and COX? I know both are part of an inflammatory process, but are they linked? Is COX downstream of TNF or are they two seperate processes? I guess what I'm trying to figure out is how dentrimental TNF inhibition is, besides the immunosuppression part.

    Were you guys able to get your hands on pentoxifylline at a local pharmacy? All the reports I've read online seem to say that it's out of stock with rumors that it's been discontinued.

    Funk, did anything else precipitate that infection? I'm kind of surprised you were able to pick up an infection that severe so easily. Were you taking a particularly large dose or anything?

  11. #51
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    Quote Originally Posted by adreno View Post
    Holy Basil is the best damn anti-inflammatory I ever tried, including curcumin and NSAIDs.

    NAC, ALA and EGCG are also options.
    What's the word on Holy Basil?

    Anyone here heard of astaxanthin?

    Astaxanthin - Wikipedia, the free encyclopedia

    Anyone got a full text of this..it would provide more info:
    http://www.ncbi.nlm.nih.gov/pubmed/16431409

    Someone recently recommended it to me as an amazing anti-inflammatory.

    The reviews on Iherb are nothing short of spectacular, for what they are worth.

    Now Foods, Astaxanthin, 4 mg, 60 Veggie Softgels - Customer Reviews - iHerb.com

    I order from iherb and know there is no reason to leave positive vrs. negative reviews.
    Last edited by cubbieblue; June 9th, 2011 at 10:56 PM.

  12. #52
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    Quote Originally Posted by cubbieblue View Post
    Funk, did anything else precipitate that infection? I'm kind of surprised you were able to pick up an infection that severe so easily. Were you taking a particularly large dose or anything?
    I was taking 400mg tid, the standard dose, and I attributed the infection to opportunistic infection by normal skin flora. I do clean a cat litter box daily and maybe that had something to do with it. The timing wasn't coincidental though, it started around the beginning of the second week on PTX. Poor sleep may have also played a role, as I found it to be disruptive of sleep just like other methylxanthines.

    Its like the cheapest drug ever from overseas pharmacies, a month supply is under $10 IIRC. I wouldn't let my experience dissuade you from an experiment, like I said kimber loves the stuff.
    Last edited by FunkOdyssey; June 9th, 2011 at 11:18 PM.

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    Quote Originally Posted by cubbieblue View Post
    What's the word on Holy Basil?

    Anyone here heard of astaxanthin?

    Astaxanthin - Wikipedia, the free encyclopedia

    Anyone got a full text of this..it would provide more info:
    Astaxanthin: a review of its chemistry and applica... [Crit Rev Food Sci Nutr. 2006] - PubMed result

    Someone recently recommended it to me as an amazing anti-inflammatory.

    The reviews on Iherb are nothing short of spectacular, for what they are worth.

    Now Foods, Astaxanthin, 4 mg, 60 Veggie Softgels - Customer Reviews - iHerb.com

    I order from iherb and know there is no reason to leave positive vrs. negative reviews.
    Careful with the iHerb reviews. Look around -- there are ridiculously positive reviews on a whole range of products, many of which are very unlikely to have produced such positive results. Placebo effect is strong with this kind of stuff.

    That said, I've read a bit about it here and there. It does sound like a fairly potent anti-inflammatory on paper, but these things don't always pan out. I will note that, in the XMRV thread, Funk said:

    Dropped astaxanthin until I can find a smaller dosed product, as I found a study where 8mg in human volunteers was actually pro-inflammatory, while 2mg was anti-inflammatory.


    I've never bothered to look for the study Funk mentioned, but it might be worth some consideration before jumping it. That said, that kind of anti-/pro-inflammatory threshold effect seems pretty common in anti-inflammatory compounds.

    It does look interesting, though.

  14. #54
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    Quote Originally Posted by FunkOdyssey View Post
    I don't know how many people tried it. Out of our small group there is at least one success story, Kimber, who likes it very much. In my case, while taking it for a few weeks, my fingernail beds started getting inflamed and one of them developed into a full blown bacterial infection that swelled up my entire finger tip until I got on antibiotics. It seemed like it was significantly immunosuppressive in a way that wasn't doing me any favors.

    YMMV
    Very interesting. Certainly sounds like it's got some pretty profound immunosuppressive effects.

    Might wait to try that one 'till after I run the Lyme tests.

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    Quote Originally Posted by cubbieblue View Post
    Anyone here have a good reference for understanding the difference between TNF and COX? I know both are part of an inflammatory process, but are they linked? Is COX downstream of TNF or are they two seperate processes? I guess what I'm trying to figure out is how dentrimental TNF inhibition is, besides the immunosuppression part.
    Funk is probably better equipped to handle this than I am, since I am only just beginning a foray into immunology, but I'll say this.

    They're both regulated by NF-kappaB, which is one of the reasons they come up so much. Inhibit NF-kappaB with something like curcumin, and you inhibit both TNF and COX.

    As to the immunosuppression, I believe the effects of TNF are relatively specific. As the name suggests, inhibiting TNF increases vulnerability to cancer, but I believe TNF is also heavily involved in response to bacterial pathogens. IIRC, it is not however nearly as relevant to viral pathogens.

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    Look into intramuscular stimulation. I have very similar problems to you and it's the only thing that's every worked. Don't get it confused with acupuncture, either.

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    Senior Member kassem23's Avatar
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    Quote Originally Posted by Ex Dubio View Post
    However, I just noticed (PMID: 21314329) appears to be in humans and the authors found that curcumin inhibited TNF. The only problem is that I can't get the full text, so it's hard to say much at all about it.
    I am deeply sympathetic with your situation, and I will ask my father as soon as he is available. Not sure he knows much about this, but he does know a whole hell of a lot about hormones and immunology. I've attached the paper for you in case you are still interested.
    Attached Files Attached Files
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    Last edited by kassem23; June 10th, 2011 at 09:58 AM.
    My personal neuroscience weblog, you should check it out: The Illuminated Brain - A Weblog on Neuroscience

    "It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts." - Sherlock Holmes

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    Senior Member kassem23's Avatar
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    Quote Originally Posted by cubbieblue View Post
    Here you go. Good luck.
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    My personal neuroscience weblog, you should check it out: The Illuminated Brain - A Weblog on Neuroscience

    "It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts." - Sherlock Holmes

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    Senior Member morganpmiller's Avatar
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    Hmm, I've suspected something autoimmune with me for a while now. I just started taking astaxanthing again a few weeks ago, 8 mg/day. If something autoimmune is going on with me, I wonder if I could be benefitting from it already. At least hopefully it's alleviating other musculoskeletal issues. It's so hard to tell sometimes with everything else I'm taking. I also just started up sertraline again, which has immunomodulatory and anti-inflammatory effects. I'm probably never going to know exactly what is helping and how much, and it doesn't matter much I guess as long as I'm feeling an functioning better.

    Thanks for the review kassem.
    Last edited by morganpmiller; June 10th, 2011 at 10:26 AM.

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    Senior Member adreno's Avatar
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    Quote Originally Posted by cubbieblue View Post
    What's the word on Holy Basil?
    In terms of reduction of pain/burning/tingling it has been the most effective anti-inflammatory for me. Whether it's good for long term healing, I don't know. It has many of the same properties as curcumin.

    Anyone here heard of astaxanthin?
    I haven't felt any difference on various doses of astaxanthin.
    Last edited by adreno; June 10th, 2011 at 04:59 PM.

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