TNF alpha blockers - anyone tried?

[ramakentesh]

My Rhuematologist wants to give me Humira which is an Tumour Necrosis Factor blocker for Ankylosing Spondyltis and Im a little worried that it might cause my POTS/CFS to spike up bad.

Anyone here had any experience with these medications either for CFS or for another comorbid condition??

thanks in advance!

 

[ukxmrv]

I took Humira (one injection every one or two weeks) for a couple of months. Had high tnf-a on blood test. This really did help with the sore throats etc I get. Discontinued as my doctor died and I could not afford to continue. No long terms bad effects. POTS was fine for me on Humira.

 

[adreno]

Why would it worsen POTS?

 

[ramakentesh]

Im not sure it would. Just wondering about people's experiences. I tend to get flares of one or the other and I worried that if I put one in remission the other would get more aggressive.

 

[xrunner]

TNF blockers are a blunt solution and may worsen any underlying infection.
There are natural alternatives. The two I know of are cat's claw and stephania tetranda, they're very effective anti-inflammatory herbs (there are studies if you look them up). Stephania is also a calcium channel blocker and may also normalise heart rate (I found it helpful when I had palpitations). But you need to be cautious.
more info on the herbs here
http://buhnerhealinglyme.com/

 

[liquid sky]

I've taken TNF blockers and they never really helped or hurt ME, POTS or my inflammation. I find them highly overrated.

 

[ramakentesh]

TNF blockers are a blunt solution and may worsen any underlying infection.
There are natural alternatives. The two I know of are cat's claw and stephania tetranda, they're very effective anti-inflammatory herbs (there are studies if you look them up). Stephania is also a calcium channel blocker and may also normalise heart rate (I found it helpful when I had palpitations). But you need to be cautious.
more info on the herbs here
http://buhnerhealinglyme.com/

Thanks for the replies.

I dont prescribe to the theories that CFS can and is caused by longterm underlying infections in my case.

Julian Stewart and others work suggests that in CFS there is chronic activation of the cytokine-driven arm of the innate immune system - that is CFS may be in part a result of an autoimmune mediated inflammatory disorder. I believe this to be the case particularly in my circumstances since I developed Ankylosing Spondylitis within a month of spontaneously developing CFS/POTS. Secondly many of the symptoms of CFS are also found in other inflammatory disorders - ank Spond being the best example - an illness that is also related to the chronic activation of proinflammatory cytokines.

In terms of herbs I would really only be interested in actual suppressors of TNF alpha activation rather than just antiinflammmatory herbs. I am already aware that tumeric is probably the best example of this but I have an allergy to it unfortunately. I have an interest in ethnopharmacology.

Surprised Liquid sky that you go no benefit from TNF alpha inhibitors. Do you know which one you tried?

Part of my hesitation is that maybe 5% of Ankylosing Spondylitis who take TNF alpha blockers develop MS (some had signs before, others none). I worry that because I have comorbid POTS my messed up immune system might go the other way

 

[adreno]

You could look into pentoxifyline. It's a potent TNF inhibitor, with a very benign side effect profile. It's a powerful vasodilator also, which might/might not be fitting for your POTS.

 

[mellster]

This is what I find so - for lack of a better or 'sader' therm fascinating about this condition - that there are basically two camps: immune-deficiency and auto-immune. If it were in fact partly auto-immune lowering of active NK cell numbers would theoretically also lower the secretion of pro-inflammatory cytokines such as TNF-alpha. What if the low/low normal NK cell numbers is at least a temporary reaction of the body to try to put an end to inflammation? Although not only NK cells secrete cytokines (so maybe other cells are in overdrive) I don't understand the simultaneous condition of inflammation and low NK cell numbers, rather there should be an inverse-proportional relationship. I agree though that I'd be wary of immune suppressors until more is understood and would try to go with the natural cytokine inhibitors mentioned.

Thanks for the replies.

I dont prescribe to the theories that CFS can and is caused by longterm underlying infections in my case.

Julian Stewart and others work suggests that in CFS there is chronic activation of the cytokine-driven arm of the innate immune system - that is CFS may be in part a result of an autoimmune mediated inflammatory disorder. I believe this to be the case particularly in my circumstances since I developed Ankylosing Spondylitis within a month of spontaneously developing CFS/POTS. Secondly many of the symptoms of CFS are also found in other inflammatory disorders - ank Spond being the best example - an illness that is also related to the chronic activation of proinflammatory cytokines.

In terms of herbs I would really only be interested in actual suppressors of TNF alpha activation rather than just antiinflammmatory herbs. I am already aware that tumeric is probably the best example of this but I have an allergy to it unfortunately. I have an interest in ethnopharmacology.

Surprised Liquid sky that you go no benefit from TNF alpha inhibitors. Do you know which one you tried?

Part of my hesitation is that maybe 5% of Ankylosing Spondylitis who take TNF alpha blockers develop MS (some had signs before, others none). I worry that because I have comorbid POTS my messed up immune system might go the other way

 

[ramakentesh]

thanks - great post!

 

[Snow Leopard]

There was a paper last year which actually proposed trials for TNF-alpha antagonists (blockers) as potential treatments for CFS.

 

[xrunner]

Thanks for the replies.

I dont prescribe to the theories that CFS can and is caused by longterm underlying infections in my case.

Julian Stewart and others work suggests that in CFS there is chronic activation of the cytokine-driven arm of the innate immune system - that is CFS may be in part a result of an autoimmune mediated inflammatory disorder. I believe this to be the case particularly in my circumstances since I developed Ankylosing Spondylitis within a month of spontaneously developing CFS/POTS. Secondly many of the symptoms of CFS are also found in other inflammatory disorders - ank Spond being the best example - an illness that is also related to the chronic activation of proinflammatory cytokines.

In terms of herbs I would really only be interested in actual suppressors of TNF alpha activation rather than just antiinflammmatory herbs. I am already aware that tumeric is probably the best example of this but I have an allergy to it unfortunately. I have an interest in ethnopharmacology.

Surprised Liquid sky that you go no benefit from TNF alpha inhibitors. Do you know which one you tried?

Part of my hesitation is that maybe 5% of Ankylosing Spondylitis who take TNF alpha blockers develop MS (some had signs before, others none). I worry that because I have comorbid POTS my messed up immune system might go the other way

No, no, I've no use for theories. I'm only into practical solutions that do work. I leave everything else to the experts.

Cat's claw and stephania? If I mentioned those is because they have a specific TNF inhibitory action, in addition to a broad anti-inflammatory, antioxidant etc etc. Stephania works more like a drug than a herb, I found it very strong and it's got some important interactions to be mindful of. There's an extensive scientific review of the herbs in Buhner's book Healing Lyme.

Infections? Some in their late stage lead to autoimmune reactions. Lyme and Cpn I know of, there certainly must be others. There are studies. Also some personal stories on various sites.

Good luck with everything.

 

[ukxmrv]

For a while I belonged to a yahoo group with an interest in lowering TNF-a levels. The people there (mainly women with an interest in infertility issues and being treated by the same sort of doctors) were trying all sorts of herbs and supplements etc to try and lower TNF-a. Few had any success without resorting to Humira and other similar drugs.

I'm always game to try the cheaper and more natural alternatives if I can.

 

[ramakentesh]

Most definately. thanks everyone.

Sorry wanst away that Cats Claw and Stephania were TNF alpha inhibitors. I wish these plants didnt have so many other properties as well though.

 

[SaraM]

Most definately. thanks everyone.

Sorry wanst away that Cats Claw and Stephania were TNF alpha inhibitors. I wish these plants didnt have so many other properties as well though.

Recently started Cats Claw and it is really helping with my muscle pain. I don't believe in herbs but this one is doing something. Which properties I should worry about?

 

[ramakentesh]

i personally dont do well with any herb that contains oxalic acid or ace inhibitors. I fainted after drinking a tea of with just five goji in it. Crazy!

I read a fascinating piece on depression and TNF alpha. I find this fascinating because I also have Ank Spond and when i get a flare up now days I tend to get low mood as well. Apparently they also have now found elevated TNF alpha - both peripheral and CNS in depressive patients and apprently they think that rather than effect serotonin release, uptake or reception, that chronic increases in certain cytokines actually stops the body even producing serotonin and they find low trytophan precursors, high tryptophan catabolic metabolites but low actual serotonin levels.

They wonder whether SSRIs are working different ways, because reduced reuptake would not do much if there was low serotonin to begin with. perhaps the sutblte increase just reduces expression of 5HT receptors.

So it got me wondering about the nature of CFS with documented innate immune activation, chronic activation of pro inflammatory cytokines like TNF alpha and whether some how this is also not decreasing serotonin release, but actual production. SSRIs and precursors might work to fix this short-term, but the best solution would actually be to decrease actual inflammation through stopping these cytokines. it might also explain stomach irritability - as low serotonin might tranlsate to hypersensitive receptors in that area, it might explain the altered hemodynamics in those with OI as serotonin receptors are specific venous constrictors.

So with this in my head Im just going to go out and try Humira. I can get it tomorrow as I have 8 1/2 year Ankylosing Spondylitis. Will be interesting to see how this translates to perhaps fixing POTS and the periods of tired inflammation I call CFS.

 

[ukxmrv]

I had a serotonin test at the same time as the TNF-a one. Mine was fine. Some patients with CFS have high serotonin.

The problem with reading general things and then trying to guess is that unless the originally article was written specifically about ME or CFS the conclusion may be entirely wrong.

 

[ramakentesh]

Id responsd to that comment by mentioning the fact that the ME and CFS cohort probably contains numerous and even opposed etioligical mechanisms, much of the literature on CFS and ME was until recently rarely subjected to peer review or published in reputable medical journals and some even proposed mechanisms that ignored even a basic understanding of physiology.

So whether we 'guess' about the nature of an illness using 'patient speculation', 'patient theories' or newer research on CFS, or look at research that perhaps provides a wider scope to see how certain neurotransmitters or cytokines that have been implicated in CFS act in other disease states it is all just speculation, but I dont think that the relevance of one outweighs the rest.

the science of ME and CFS has until very recently been very poor. Every day I read posts on this forum based on patient theory or older research where people try to twist any new finding into their preconceived opinion about the nature of the illness. many people seem unable to unwilling to balance poor science against good science. So Id sooner examine studies relating to other health problems that relate to similar markers linked to CFS than make assumptions about an illness based on research that itself usually contains many assumptions. After all science isnt about my opinion being right because im louder - its about the person who formulates the theory or opinion subjecting it themselves to challenge - being its own worst enemy.

Its been continuously established that innate immune system and cytokine activation is a primary problem in many patients with CFS. Secondly it appears clear that CFS in many - particular those that display primarily neurological features - could have a CNS etiological mechanism.

thirdly many CFS patients definately exhibit depression, signs of low serotonin including sensitivities to pain (although sodium channel activation and other factors could certainly account for it).

But certainly a cohort of CFS patients could have elecated serotonin - since two cohorts of POTS patients have opposing findings - soe have elecated endothelial nitric oxide, while others have reduced nNOS and eNOS.

 

[ramakentesh]

Your comment about having a 'TNF alpha test' is an example. Do you know how quickly TNF alpha is catabolised? How was it tested? Do you think serum levels provide a clear view of the activation of this cytokine within the CNS? Endothelial TNF alpha? etc. In Ankylosing Spondylitis serum levels of TNF alpha are considered 'meaningless'. Since its a cytokine of the innate immune system, its chronic activation can be - and nearly always is - local only.

 

[ukxmrv]

I've tried to help you in the past by responding to your questions and requests for help by helping with my own experience of test results and also with drugs when you have asked. Don't deserve a tirade in response. Won't be bothering again.

If I want to know about TNF-a tests or serotonin in CFS patients I'll ask a doctor with experience in the topic (which I have already done).

I wish you all the best for finding answers to all your different conditions.