Tocilizumab is amazing, anyone tried?

[StrayCat]

My friend was a severe ME patient.He couldn't walking alone.But he started Actemra(tocilizumab) 3 months ago.(He cheated a RA doctor.He pretended to has RA)
I can't believe that how he recovered.now he can running faster than his healthy friends and getting healthier every day.
(in addition,he said,Actemra autoinjactor is unbelievably easy to use and painless.)

I was very moved that's effects so searched on the internet to know other ME patients using this medicine,but couldn't get any informations.

He said,a doctor who belongs to NCNP(Japan) told him that tocilizumab may effects ME and thay want to start a study/clinical trial in the near future.

anyone have experiences or informations?

(I'm sorry that sometimes I couldn't reply to your comments.Somehow I'm afraid of watching comments for me.)

 

[AdamS]

Can't say i've tried or even heard of Tocilizumab before, looks like it's a monoclonal antibody against the interleukin-6 receptor (IL-6R). I believe IL-6 levels have been shown to vary depending on disease duration/severity in ME/CFS but could be wrong. Perhaps @Jonathan Edwards would be interested in commenting on it. Either way, while this is just one case, it's exciting to hear such a vast improvement.

 

[StrayCat]

Thanks for your comment!
Reading long English sentences is difficult for me but I'll try read that.
I forgot to say,interestingly before trying tocilizumab,his CRP rebel was normal and didn't find any autoantibodies.

 

[AdamS]

No problem Sorry for the long sentences. I'm very happy to hear of your friend's progress!

 

[Jesse2233]

Interesting I've been researching this drug!!

Did they measure his IL-6 levels before?

 

[Jesse2233]

@StrayCat can your friend speak English? And would he be willing to come on here and share more about his experience?

 

[AdamS]

Looks like Lunasin also reduces IL-6 and is available as a supplement. No idea if it would be of any benefit.

 

[Jesse2233]

Interesting

I know there are a whole class of anti-IL-6 drugs used in RA as well as a set of supplements that also act against IL-6

 

[Jesse2233]

Anti-IL6 agents from @Hip

Four macrolides (roxithromycin, erythromycin, clarithromycin and azithromycin) inhibited IL-1β, TNF-α, IL-6 LPS-stimulated J774 macrophages. 1 (full text). NOTE: Roxithromycin is the only macrolide antibiotic that crosses the blood brain barrier.
Macrolide antibiotics (like azithromycin and erythromycin) inhibit IL-6 1
Amoxicillin significant decreased IL-6 plasma levels by the 7th day of therapy. 1
Vitamin C and vitamin E inhibit muscle-derived IL-6. 1
Blueberries reduce TNF-α and IL-6 in mouse macrophages 1
Patchouli alcohol (from patchouli essential oil) inhibits IL-1β, TNF-α, IL-6 in mouse macrophages (RAW 264.7 cells) 1
Genistein inhibited LPS-induced IL-1beta, IL-6, and TNF-alpha expression in macrophages. 1
Vinpocetine inhibited the production of inflammatory factors such as IL-1β, IL-6 and TNF-α in BV-2 microglia. 1
Sulforaphane attenuates the LPS-induced increase of IL-1beta, IL-6, and TNF-alpha expression in microglia 1 Sulforaphane reduces TNF-α-induced IL-6 synoviocytes 1
Vitamin D inhibits LPS-induced IL-6 and TNF-α production in macrophages. 1
Cyclosporin A decreases human macrophage interleukin-6 synthesis. 1
Luteolin reduces IL-6 production in microglia. Luteolin: 90% drop in IL-6 production.1Pretreatment of primary microglia with 10 and 25 μM luteolin reduced LPS-induced IL-6 production by 40% and 90%, respectively. When luteolin was increased to 50 μM, IL-6 secretion by LPS-stimulated microglia was completely blocked. If we take the bioavailability of luteolin to be 5%, then the dosage to achieve a 25 μM concentration is 25 x 286.24 / (55 x 250) = 520 mg of luteolin. NOTE: the lutein bioavailability when given as Chrysanthemum morifolium extract is 55.4%, but for pure lutein is may be much lower. 1
Alpha acids and iso-alpha acids in hops(found in beer) block the TNF-alpha induced production of IL-6. 1
Polyphenols in non-alcoholic beer reduce IL-6 1
Calendula officinalis (marigold) inhibits IL-1beta, IL-6, TNF-alpha and IFN-gamma. 1
Magnolia officinalis (Magnolia) Obovatol (from Magnolia) attenuates microglia-mediated neuroinflammation. 1
Niacinamide 1
Pyrroloquinoline quinone (PQQ) reduces IL-6 1

 

[Groggy Doggy]

Anti-IL6 agents from @Hip

I would be more inclined to try Niagen/nicotinamide from the long list you posted.


https://www.ncbi.nlm.nih.gov/pubmed/12519385

 

[Jonathan Edwards]

My friend was a severe ME patient.He couldn't walking alone.But he started Actemra(tocilizumab) 3 months ago.(He cheated a RA doctor.He pretended to has RA)
I can't believe that how he recovered.now he can running faster than his healthy friends and getting healthier every day.
(in addition,he said,Actemra autoinjactor is unbelievably easy to use and painless.)

I was very moved that's effects so searched on the internet to know other ME patients using this medicine,but couldn't get any informations.

He said,a doctor who belongs to NCNP(Japan) told him that tocilizumab may effects ME and thay want to start a study/clinical trial in the near future.

anyone have experiences or informations?

(I'm sorry that sometimes I couldn't reply to your comments.Somehow I'm afraid of watching comments for me.)

Maybe your friend does have RA?
It would be very difficult to persuade a doctor you have RA if you do not, at least in the UK.

 

[Jesse2233]

Maybe your friend does have RA?
It would be very difficult to persuade a doctor you have RA if you do not, at least in the UK.

Perhaps doctors in Japan are more liberal with tocilizumab as it was developed by a Japanese company

 

[jpcv]

Maybe your friend does have RA?
It would be very difficult to persuade a doctor you have RA if you do not, at least in the UK.

how can someone pretend to have RA?

 

[Jonathan Edwards]

how can someone pretend to have RA?

Good question!!

 

[Jonathan Edwards]

Perhaps doctors in Japan are more liberal with tocilizumab as it was developed by a Japanese company

They might even be working for that company.

 

[ErdemX]

They might even be working for that company.

So, maybe, while the patient was thinking he is tricking the doctor, the doctor was actually tricking the patient pretending to believe the fake RA claim

 

[Gingergrrl]

how can someone pretend to have RA?

I have no idea b/c I test negative for rheumatoid factor and have no joint pain or redness. If I had RA, my insurance would approve the Rituximab but I don't and you can't create a fake autoantibody test that I am aware of! I have every other autoantibody on the planet but not that one.

 

[Jesse2233]

@StrayCat, do you know if his onset was sudden from a virus? Specifically a Coxsackie virus?

This article states that IL-6 is important in lessening the severity of chronic autoimmune myocarditis caused by coxsackie so perhaps blocking the IL-6 receptors with Tocilizumab would not be a good idea for everyone. Would be interested in @Hip's and @halcyon's thoughts on this as well

Interestingly, this study shows that use of the drug, along with the corresponding fall in IL-6 levels, improves glycolysis by increasing levels of pyruvate dehydrogenase (!!!).

Interestingly, the abundance of pyruvate dehydrogenase was increased in the CD14+, CD8+, CD19+, and CD56+ cells during IL- 6R inhibition. Considering the energy-need, it seems that the higher abundance of phosphoenolpyruvate carboxykinase and L-lactate dehydrogenase A/B in CD14+ cells, as well as the increased abundance of pyruvate dehydrogenase, in CD14+, CD8+, CD19+, and CD56+ cells during treatment, suggest an increased enzymatic activity to convert lactate in pyruvate, and ethanol into acetate during treatment. Overall, it seems that more energy is being produced through glycolysis during treatment (which induces disease remission), indicating that the cells experience less environmental stress and inflammation.

Tocilizumab also significantly boosts 7 of 9 enzymes in the Krebs cycle:

Downstream from glucose metabolism, several proteins involved in the TCA pathway were significantly more abundant in CD14+ cells during treatment. Eight out of nine key enzymes were found with a differentiating abundance, of which seven were significantly different, and one non-significantly. This further establishes, that the aerobic energy production of the CD14+ cells has increased as a result of the biological treatment. The increase in the abundance of these enzymes was less pronounced in the other cells types. Spite most of the involved enzymes were non-significantly more abundant across the cells types, enzymes with a statistically significant abundance increase were identified. For example, citrate synthase was significantly more abundant in CD14+, CD8+, and CD19+ cells during treatment, suggesting an increased capacity to produce citrate in these cells, and thus potential for increased ATP production.

And it increases glutathione

Furthermore, Glutathione peroxidase 1, which is a scavenger of ROS was more abundant in the CD14+ cells during treatment, further indicating an increased protection from radical scavengers.

Changes in glycolysis and Krebs cycle proteins after 4 months of Tocilizumab. Note PDH's increase in NK Cells (CD56+) among other interesting findings

 

[StrayCat]

Thanks,everyone!
He can read English.but can't speak/write well. I'm writing his proxy.
He was pleased with your comments.(me too!)

He went to a RA doctor and told him
"I was taking MTX 6 months.it is effective,but I can't stand side effects.I wanna quit MTX,is there anything good medicine?
now I'm on MTX,therefore even if you test my blood,you cannot find any abnormalities that I had 6 months before.(for example,RF,anti-CCP etc)"

Actually,he was taking MTX 6 months and it was effective a little,it's true.
He knew that if can't use MTX,doctors will choice tocilizumab. it's not required with use MTX.
Doctor tested his blood.there were no abnormalities.next week he decided to prescribe Actemra for him.

He requested me to keep his lies secret with other persons except members of this forum.but he want to spread tocilizumab's effectiveness around the world.
he said,"please speaking everyone this point,however please don't speak about my lies."

 

[Jonathan Edwards]

It sounds as if your friend has RA. The presence of RF or anti-CCP is not what matters. (It sounds as if he/she did have them at one point anyway.) Tocilizumab is excellent for the fatigue of RA.