Tocilizumab is amazing, anyone tried?

[Jesse2233]

@StrayCat how did his ME start? A flu or more slowly over time? And had he had his IL-6 levels checked before Actemra?

 

[StrayCat]

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.

No,he don't have RA and got MTX on the internet.He thought use it instead of rituximab.In Japan,MTX is the only immunosuppressant that can buy on the internet.additionally it is so cheap.

 

[StrayCat]

@StrayCat how did his ME start? A flu or more slowly over time? And had he had his IL-6 levels checked before Actemra?

at first slowly getting worse,after he has got flu,suddenly dropped.since then getting worse and worse.I don't know more details.maybe his former doctors didn't check IL-6 levels so he may not know about it.

 

[Jesse2233]

at first slowly getting worse,after he has got flu,suddenly dropped.since then getting worse and worse.I don't know more details.maybe his former doctors didn't check IL-6 levels so he may not know about it.

Can you give any more details about his current activity levels? And what the NCNP is planning for a study?

 

[Gingergrrl]

@Jesse2233 @Jonathan Edwards

What type of doctor would test for IL-6 levels and if they were high, what would this usually imply and what would be the treatment? Does IL-6 usually indicate autoimmunity or something else?

 

[ErdemX]

@Jesse2233 @Jonathan Edwards

What type of doctor would test for IL-6 levels and if they were high, what would this usually imply and what would be the treatment? Does IL-6 usually indicate autoimmunity or something else?

KDM regularly does an pro-inflammatory cytokine panel, and I think he has a paper where he says IL-8 is one of the indicators of CFS. In those tests my IL-6 was usually high, but my IL-8 was sky high, like 100 times more than normal values. So, if this RA drug was targeted for IL-8, I would probably consider it.

 

[Jesse2233]

KDM regularly does an pro-inflammatory cytokine panel, and I think he has a paper where he says IL-8 is one of the indicators of CFS. In those tests my IL-6 was usually high, but my IL-8 was sky high, like 100 times more than normal values. So, if this RA drug was targeted for IL-8, I would probably consider it.

HuMax-IL8 Is an anti-IL8 monoclonal antibody, used for cancer treatment

 

[Jesse2233]

@Jesse2233 @Jonathan Edwards

What type of doctor would test for IL-6 levels and if they were high, what would this usually imply and what would be the treatment? Does IL-6 usually indicate autoimmunity or something else?

A good immunologist should be able to test it. It can indicate inflammation or autoimmunity in my understanding but isn't diagnostic of either

 

[Gingergrrl]

KDM regularly does an pro-inflammatory cytokine panel

Thanks and for some reason I have never been tested for cytokines. My doctor said we already know they'd be high and wouldn't really add anything new to the clinical picture.

A good immunologist should be able to test it. It can indicate inflammation or autoimmunity in my understanding but isn't diagnostic of either

Thanks, Jesse. Do you know if having high IL-6 would be useful for insurance approval of treatments or would this be of no additional use or meaning to them?

 

[StrayCat]

Can you give any more details about his current activity levels? And what the NCNP is planning for a study?

He go to shopping every day.it takes about 40 minute to the shop on foot.
he needs sleep 10 hours/day.he seems getting well.but get tired easily yet.
He doesn't know NCNP's plan well.he said he'll ask about it doctor at next time.

In Japan,the rainy season has come.its make me sick...so my English ability falling more than usual.sorry

 

[dreampop]

@StrayCat How long did it take your friend to notice improvements? Do you know what percent he has improved to so far, like 10% to 50% or 20% to 70%?

Are you considering trying to take it like your friend?

Hope you feel better soon, your English is still good!

 

[StrayCat]

@StrayCat How long did it take your friend to notice improvements? Do you know what percent he has improved to so far, like 10% to 50% or 20% to 70%?

Are you considering trying to take it like your friend?

Hope you feel better soon, your English is still good!

Day 0:after the first infusion,nothing special.(0%)
Day 1:He noticed that he can make voice easier than before."Why?it's strange"(I think so,too)(2%?)
4 weeks afterain reduced.still feeling tiredness(10%)
8 weeks afterain has gone.it is amazing!(40%)
12 weeks after:Now he doesn't feel fear about ME.but still feels tiredness.he wants to try muscle training(push ups,playing on the bars...because these can do free!)(60%)

About me,I can not explain,it is too complicated than my English level...sorry
but I can say,I hope everyone get this!

 

[StrayCat]

Oh! I mistaken...I don't like that pink smile stamps...

 

[gregh286]

KDM regularly does an pro-inflammatory cytokine panel, and I think he has a paper where he says IL-8 is one of the indicators of CFS. In those tests my IL-6 was usually high, but my IL-8 was sky high, like 100 times more than normal values. So, if this RA drug was targeted for IL-8, I would probably consider it.

same here.
il 6 was 8 (0-5)
il 8 was 1670 (0-15)
niacin overload worth a try: https://www.ncbi.nlm.nih.gov/pubmed/12519385

 

[dreamydays]

Day 0:after the first infusion,nothing special.(0%)

Hi StrayCat, do you know if he used self injector from week one and if he doses every week?

 

[deleder2k]

Mr. Japan, how is your friend doing? And can you really buy playstations in a vending machine there? And mtx legally online without a script??

 

[Navid]

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.)

@Ben Howell
@Janet Dafoe (Rose49)
@JaimeS



anything Dr. Davis has looked at? : )

 

[dreampop]

@StrayCat Any updates? I hope the rainy season hasn't wiped you out.

One thing I wanted to ask about your earlier post was if tiredness = fatigue? Did his fatigue improve but he still has tiredness like lethargy or malaise? Or did his fatigue not improve?

 

[dreampop]

Where is my friend @StrayCat? It's been 6 weeks, I'm eager to see if your friend remained at 60%, improved or worsened.

I looked up response times to Actemra in RA - it generally happens between 2 - 8 weeks. So that is consistent with the drug working and not a placebo.

 

[snowathlete]

same here.
il 6 was 8 (0-5)
il 8 was 1670 (0-15)
niacin overload worth a try: https://www.ncbi.nlm.nih.gov/pubmed/12519385

My IL6 was 484
IL8 was 4689
Plus other stuff like PGE2, which I think is a bigger problem for me.
CAn't say I'm that surprised this person feeling better from lowering some of their inflammation. I'd jump at the chance to try such drugs and see if I felt any better.