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jangle

Has Anyone Tried Or Been On Biologics?

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I'm on ivig which is considered a biologic. My pots is being caused by an immune deficiency and autoimmune disease. The ivig along with the addition of specifice drug treatment for the autoimmune disease have improved my orthostatic symptoms as well as other symptoms. I still have a way to go though and don't know how much further improvement there will be yet. If I should stop treatments though I'm sure I would be in worse shape.

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My son is on Humira (which is a biologic) for an acute onset of severe inflammatory arthritis/anklylosing spondylitis. I've suspected he may have been having ANS issues for about 5 years and definitely was having ANS symptoms when he was so ill recently but he doesn't have an official ANS diagnosis. However the ANS type symptoms are resolving as his other issues are getting better controlled.

Good question Jangle. I've been wondering the same thing.

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When you say resolving like you mean greatly reduced or completely gone? Sorry to hear about your son's flare.

I'm mostly curious because now from that study Rama posted it would seem biologics shall be indicated for POTS.

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ANS symptoms seem to be nearly fully resolved, pain/swelling issues are improved substantially.

Will you please share what you learn from the rheumatologist when you see him?

Biologics are INCREDIBLY expensive at this point. Maybe they'll come down in time but I imagine it's going to be hard to get insurance companies to pay the $30,0000 a year that his meds cost for a POTS diagnosis unless they get some pretty hard data to support their use.

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Biggest problem is that there are only biological medications for certain cytokines - there are 100s of cytokines that play numerous roles in the body - mice without many of them died within days of birth. the cytokines involved may relate to a specific receptor but still these will be a fair few - inhibition of any of these would be understudied and dangerous.

I have been offered humira in teh past for TNF alpha but have never tried it to date. herbal TNF alpha supressors are generally poor. TNF alpha itself has not been implicated at all in any study so far on POTS.

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From the other study it would seem gp130 or the IL-6 cytosines are involved with inhibiting hand2. You're right in that it is understudied ..but when has that stopped me before?

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I may be trying rituxan soon. If I do I will let you all know how it goes. I have been doing ivig for 20 months but personally would not consider that a biologic in the context of this conversation.

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From the other study it would seem gp130 or the IL-6 cytosines are involved with inhibiting hand2. You're right in that it is understudied ..but when has that stopped me before?

Let us know how you do. We all seem willing to try nearly anything at least once. LOL :)

Issie

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I may be trying rituxan soon. If I do I will let you all know how it goes. I have been doing ivig for 20 months but personally would not consider that a biologic in the context of this conversation.

Well, CFS patients seem to do well from rituxan. http://www.biomedcen.../1471-2377/9/28

Dr. Stewart found that CFS and POTS patients tend to have similar profiles. http://www.nature.co...pr2000180a.html

So theoretically if it helps CFS patients it might help POTS patients?

EDIT: Another study. If it works for CFS patients, they should try it for POTS. I will try to see if I can find a doctor who can do this.

http://www.plosone.o...al.pone.0026358

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I just did a quick search and found some interesting articles. I don't have time to read this long one - but think this may interesting to some of you.

http://edoc.ub.uni-muenchen.de/14379/2/Pichler_Garwin.pdf

The other one I didn't write the code down right and can't list it now. But, it's a study of a Hypothesis of Epigenics and Chinese medicine. Will get it later.

Issie

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I may be trying rituxan soon. If I do I will let you all know how it goes. I have been doing ivig for 20 months but personally would not consider that a biologic in the context of this conversation.

Well, CFS patients seem to do well from rituxan. http://www.biomedcen.../1471-2377/9/28

Dr. Stewart found that CFS and POTS patients tend to have similar profiles. http://www.nature.co...pr2000180a.html

So theoretically if it helps CFS patients it might help POTS patients?

EDIT: Another study. If it works for CFS patients, they should try it for POTS. I will try to see if I can find a doctor who can do this.

http://www.plosone.o...al.pone.0026358

Jangle, I just responded to you other thread...but yes, the reason behind the Rituxan for me is CFS but my neurologist is on board because he's seen it help one of his patients before who had horrible dysautonomia but then was treated for lymphoma. I'm just saying lots of prayers that this works out :)

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Biologics can be lifesavers but at the same time they can be risky. The ones that affect the immune system are especially helpful and especially risky. Rituxan has caused a few deaths, check out their list of side effects. Then again does everyone who has dysautonomia have autoimmune issues? I dont know but the jury is still out.. There are so many levels to target on the NET gene where do you begin. I dont think you can just stab in the dark at gene therapy. It would be great to find the lorenzo's oil of dysautonomia but even that did cure ALD. Sorry I cant get excited about this :-/

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Biologics can be lifesavers but at the same time they can be risky. The ones that affect the immune system are especially helpful and especially risky. Rituxan has caused a few deaths, check out their list of side effects. Then again does everyone who has dysautonomia have autoimmune issues? I dont know but the jury is still out.. There are so many levels to target on the NET gene where do you begin. I dont think you can just stab in the dark at gene therapy. It would be great to find the lorenzo's oil of dysautonomia but even that did cure ALD. Sorry I cant get excited about this :-/

If a doctor offered me Rituxan at a reasonable price I would take it right now no doubt. Yes there is an associated risk of about 1:2000 or so deaths from the drug but when you consider odds of 1:20 is extremely rare, then multiply that by a factor of 100 times more rare, it's just well.. really rare.

Of course CFS isn't POTS, but a lot of the studies examining CFS patients note similar characteristics - they have orthostatic tachycardia just like we do for instance. Not saying that means POTS patients will have a similar response to Rituxan that CFS patients had, but it is a strong possibility. And really I think the POTS patient population needs an autoimmune study just as bad as the CFS patients do so we can get funding that way. There's literally no clinical trials being offered right now for autoimmune drugs in POTS.

Also there are relatively more targeted biologics I'd like to try other than Rituxan, I say targeted because I feel that based off the NET protein study we can target which cytokines might be involved with POTS.

Where do you guys find your doctors who're willing to try these things? My doctors are somewhere between salt and "**** my door".

Edited by MomtoGiuliana

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Let me start by saying that I am well aware of the risks involved with rituxan. I don't have the energy to get into it now but suffice it to say I'm extremely educated on the subject. Also, I agree that plain old POTS does not equal CFS, and gosh I used to think I had plain old pots. But that was before I became more educated about my illness and perhaps my symtoms evolved and i have now seen some top specialists in the country. Mine is immune related for sure. If all I Had was a rise in heart rate on standing then I doubt I'd be looking at biologics. But since my life has been devastated by an illness that includes dysautonomia as a major symptom I'm here to post about my experiences.

Jangle, I've had to search hard for good docs...a lot of it is trial and error, even after researching who might be best to see. No one doc has all the answers...right now I'm dealing with a team of a great pcp (essential I think), a neuro for dysautonomia (prescribes ivig), an endocrinologist and a CFS specialist.

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B cell depletion is not directed against cytokines - rather b cell immune system cells. Rituximab has been found to work in some cytokine driven inflammatory diseases but the mechanism is unknown unless b cells regulate some cytokines but the opposite is often accepted.

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My main concerns with rituximab is that is is being prescribed by doctors who often have an incomplete understanding of the etiologies that they are using it to treat, and ofcourse no one has a clue why it helps the nebulous and ill-defined entity called CFS - an illness based on 'subjective symptoms' rather than objective measurements and a disease that mimics dysautonomias in some ways.

As an example, Vanderbilt found that all the POTS patients they found who also had CFS and those with just POTS were indistinguishable from each other other than increased sympathetic activity in the POTS/CFS group. So its all just speculation - nearly all of the CFS research provides conflicting and confounding results.

I dont think rituximab is an overly scary drug but all biological immuno-supressants have obvious risks. But if the argument is that it would help cytokine regulation then its a long shot since it works on b cells which are actual plasma-based immune cells rather than cytokines.

As Issie has suggested there are many foods that may effect histone regulation of epigenetic gene expression but since our understanding of non methylated regulation of genes is very infantile (from research) its impossible to determine how some dietary substances may effect the gene one way or the other.

Rich - I think your the only one talking about gene therapy and Im not sure what you mean by 'so many levels' and autoimmune issues? Autoimmune v cytokine expression abnormalities - quite different.

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This is a complex but interesting topic. I've thought for some time that the research going on with cfs and the symptomology are so similar to dysautonomia. There are actually making nonsubjective medical findings with cfs now which point to orthostatic intolerance, but as we know here many things can cause this. At least cfs research is being directed at why it's happening. I agree with some one else who posted recently that the research in dysautonomia is primarly directed at treating the symptoms not the cause or what is causing it. The fact that we gets so many here with similar symptoms which are being caused by a varity of conditions is what makes this forum so good we are seeing here a real cross section of different causes. Something that a research center focused on specific research may not see. There is great wisdom and intellectual decernment on this forum.

I don't know much about cytokines yet, I do know some about autoimmunity/immune defects and how it effects my symptoms and now I am learning about gene polymorphisms that can lead to disease states. My cardiologist did a panel of genetic laboratory testing on me that has revealed I have the highest risk polymorphism for the gene MTHFR. I have the TT or homozygous version of it. It is often found in races of a italian decent, which I am. Though it is found in other races too. It is associated with recurrent miscarriage, which happened to me. It is also associated with other disease state. I will do a more detailed post on this, as I'm interested in the collective wisdom here and your input.

Dsdmom, You and I have followed some similar treatments and have been offered similar treatments. I'm interested in hearing and sharing your experience with ivig. My neuro prescribes my ivig too! He and my rheumy have both suggested methotrexate. Who suggested that and the rituxan to you?

IVIG is considered a biologic, a biologic is any treatment that is derived from humans or animals. IVIG is an immune modulator and isn't necessarily a supressant. I wonder though are treatments like rituxan only immune suppressants like methotrexate or are they immune modulators as well? Methotrexate has recently been offered up, but my gut reaction was it might not be good for me because of the hypogamma. It appears my natural instinct to resist it were good, as I have just found that the form of the mthfr gene I have has shown toxicity to methotrexate because we are missing the enzymes that metabolizes it and folic acid.

So back to the cytokine issue, are these the cause of inflammation. As that cardio panel also shows I have high inflammatory markers some of which I'd never heard of before. What ever is going on there does appear to be a genetic cause contributing to my illnesses and symptoms. Which in an odd way is some how validating!

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Arizona Girl,

I have some mutations on my MTHFR methylation pathways also and they may be the same ones you're talking about because of they way you describe it. Would be interested in comparing notes. Since we both are having autoimmune and autoantibody issues - sounds like this may be a significant connection. Would you please PM me? Who is doing your testing ---since we both live in the same city. Might be nice for us to see the same doc.

Issie

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