Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

[Andrew]

I was reading a page at NCI about rituximab, and it linked to another site that offered this warning:

IMPORTANT WARNING:

Some people who received rituximab experienced severe reactions to the medication. Some of these people died within 24 hours after they received a dose of rituximab. Most of these deaths happened after the first dose of rituximab. Tell your doctor if you have or have ever had chronic lymphocytic leukemia (CLL; a type of cancer that begins in the white blood cells), mantle cell lymphoma (a fast-growing cancer that begins in the cells of the immune system), an irregular heartbeat, or heart or lung disease. If you have any of these conditions, or if you are female, there is a greater chance that you will experience a serious reaction to rituximab. If you experience any of the following symptoms, tell your doctor or other health care provider immediately: hives; swelling of the lips, tongue, or throat; difficulty breathing or swallowing; dizziness; fainting; shortness of breath, wheezing; blurred vision; headache; pounding or irregular heartbeat; fast or weak pulse; loss of consciousness, fast breathing; pale or bluish skin; pain in the chest that may spread to other parts of the upper body; weakness; excessive tiredness; sweating; or anxiety.

When rituximab is used to treat non-Hodgkin's lymphoma (NHL; a type of cancer that begins in a type of white blood cells that normally fight infection) it may cause a condition called tumor lysis syndrome (TLS; a group of symptoms caused by the fast breakdown of cancer cells). TLS may cause kidney failure and the need for dialysis treatment. Tell your doctor if you are also receiving cisplatin (Platinol). If you notice that you need to urinate less often than usual or that you produce less urine than usual, tell your doctor immediately.

Rituximab has caused severe skin reactions. These reactions have caused death. If you experience any of the following symptoms, tell your doctor immediately: painful sores, ulcers, blisters, rash, or peeling skin.

Some people who received rituximab developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment. If you experience any of the following symptoms, call your doctor immediately: difficulty thinking clearly or walking, loss of strength, vision problems, or any other unusual symptoms that develop suddenly.

Talk to your doctor about the risks of using rituximab.

from: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a607038.html

 

[Snow Leopard]

In terms of safety, in rare cases (eg 1/10,000), a patient will develop Progressive multifocal leukoencephalopathy as a result of re/activation of the JC virus in the brain.

Long term safety is unknown, but is discussed here:
http://www.jrheum.org/content/early/2010/01/27/jrheum.090856.full.pdf

 

[Enid]

Thanks Snow Leopard and all you Scientists. An uncanny link in my family here. I went down with full blown ME - my brother (a Doc in the States) has been diagnosed PML when taking no drugs whatsoever. Whilst I improve unfortunately he does not. (Old Dad died of Prostrate Cancer - so something much interlinked I feel going on).

 

[alex3619]

Hi Andrew, the Rituximab paper notes that the PML side-effect has never happened to someone only on Rituximab. Typically cancer patients are on a whole lot of different drugs, we can't use cancer side effect lists with any certainty. RA side effect lists might be more useful if we can get hold of RA specific lists. Bye, Alex

 

[snowathlete]

I for one, had Mono/Glandular Fever when i was a young teen, and it absolutely floored me!
I had about 9 months off school in the end, and almost had to retake a year. In the end i worked hard to catch up, then about 4 months later i had a relapse and had Mono again - at least that is what it felt like, and what the doctor said (but my medical records dont show a second blood test). I recovered after about 3 months the second time, but never felt 100% right again.
I got ME/CFS about 13 years later.

So I have always been sure that there is a link. At least in my case.

Astonishing that the Norwegian gov't issued that appology. We absolutely should push our own governments for the same!

Nobel Peace Price for these Norwegian doctors one day i hope!

 

[LaurieM]

The study has hit the mainstream news at last. I have created a new thread so as not to take this one off topic:

http://forums.phoenixrising.me/showthread.php?14360-Norwegian-Study-makes-UK-news-at-last-BBC

 

[urbantravels]

One thing to keep in mnd is that Rituximab is only one of many drugs of it's class called "monoclonal antibodies". As Dr Fluge and Mella mentioned in the Invest In Me conference, there might be other drugs in the pipeline that could be applicalbe for our disease. I hope that the success of this drug on our disease will get big pharma and rheumatologist excited. it could be a bramd new niche for them- let's just hope they define the niche properly.

This is worth repeating - I have it on excellent independent authority that there are a number of other monoclonal antibody agents coming down the pike. Ritixumab was simply one of the first to come along, so it has had more time to be studied in other conditions besides B cell lymphomas. Because it is an early generation drug, it also has some significant issues that come with it (potential severity of side effects) - but as the research expands the applications for this type of drug and helps guide development of new ones, that problem could well decrease.

If you remember news from a few months ago that a new drug, called Benlysta, has been FDA-approved for lupus treatment - Benlysta is in the same class of drugs, monoclonal antibody drugs. Unfortunately, it's not hugely effective - but it's the first new drug approved for the treatment of lupus in 56 years - which is pretty significant. Benlysta is the trade name in the US, the generic name is just adorable - Belimumbab.

 

[snowathlete]

Please check out my post in the other forum about a new petition I have setup on the UK government's website:
http://forums.phoenixrising.me/showthread.php?14362

We need 100,000 signatures to get this debated in parliment. You need to be a UK citizen, or Ex-Pat in order to sign it. If you are not, then just hound those you know from the UK until they sign it

Thanks
Joel

 

[Boule de feu]

Laval University (Montreal, Canada) did pick up the news.
http://www.neurosciences.ulaval.ca/

 

[wdb]

Encouraging to see some more news sites picked up the story today,

http://abcnews.go.com/Health/Wellne...s-autoimmune-disease-theory/story?id=14801908

http://lifestyle.aol.co.uk/2011/10/24/could-a-defective-immune-system-cause-me/

http://clinicaltrials.pharmaceutical-business-review.com/news/rituximab-proven-to-treat-mecfs-211011

http://www.medindia.net/news/Rituximab-may-Help-Treat-Chronic-Fatigue-Syndrome-92280-1.htm

 

[Sasha]

I just started a thread for international media coverage of the story if you fancy adding any of those in - I find it hard to tell which ones are well known (I was assuming ABC is the big US TV channel). We've had one on the go for UK stuff since this morning. All good stuff!

 

[Tristen]

Fascinating. If I could speculate, might it be because the body only have around 5 liters of blood (blood containing waaay to high levels of cytokines and other immune parameters), and when you "water it down", you feel better for a while...? Just some thoughts (not facts . It would fit with the hypothesis that our symptoms are mostly autoimmune in origin (without stating anything about what/which infection is causing the auto immunity).

Never thought of that. I've believed it to be just low blood volume. I do have a dramatic effect from 2 liters NS IV. But that was several years back. Not sure how it would affect me now.

My doc is currently chasing down an autoimmune component to my me/cfs.

 

[Enid]

Very encouraging indeed - thanks for your post 256 wdb !

 

[Andrew]

I see the reason for the autoimmune explanation now.

But wouldn't remission from B cell depletion also fit:

1. the theory about your immune systems begin revved up in TH2 mode. But depleting the B cells you reduce the cytokines etc. that cause our symptoms

2. there is a viral infection in B cells

 

[snowathlete]

study from 2008 exploring how NK cells are responsible for keeping EBV from transforming the B Cells during the acute EBV phase...

and this happening mainly in the tonsils is very interesting.

I had tonsilitus over and over again when i was young. The docs wanted to have them out, but my parents didnt let them.
Anyway, before i got ME/CFS i had a recurring (pretty much continual) infection in my tonsils, for about a year. Maybe a little longer. They would swell and i would get tonsil stones - which are basically an accumulation of white blood cells, sulfur and whatever the infection is. I went to the doctors and he said to come back and they would take a sample, but i was just too done in and had alot going on, like moving house, new role at work, getting baptised, getting married - all in the same year. So i didnt ever do it.
When i got ME/CFS they vanished and i dont get them anymore at all.

Looking back on it, i bet this was EBV.

 

[fla]

Those who are recently jumping on the autoimmunity and rituximab regarding ME/CFS bandwagon may now be interested in this paper discussing exactly this from a couple years ago. The National CFIDS Foundation is the most scientific & least political oriented group I have seen.

 

[Esther12]

That there are relatively common reports of dramatic improvements in CFS during pregnancy - that could indicate an auto-immune cause too (for some, anyway).

 

[Levi]

I for one, had Mono/Glandular Fever when i was a young teen, and it absolutely floored me!

I had about 9 months off school in the end, and almost had to retake a year. In the end i worked hard to catch up, then about 4 months later i had a relapse and had Mono again - at least that is what it felt like, and what the doctor said (but my medical records dont show a second blood test). I recovered after about 3 months the second time, but never felt 100% right again.
I got ME/CFS about 13 years later.

Me too, what a coincidence. Hospitalized with severe Mono for a week junior year HS, resulted in 9 months off school except home tutoring, weird relapse 4 months later with measles activation and spots all over my body. Then smooth sailing until about 14 years later. But EBV was looked at and ruled out as linked to ME/CFS by the CDC. They have the finest minds in science and would never make a mistake about something like that.

 

[Andrew]

Those who are recently jumping on the autoimmunity and rituximab regarding ME/CFS bandwagon may now be interested in this paper discussing exactly this from a couple years ago. The National CFIDS Foundation is the most scientific & least political oriented group I have seen.

Here's a quote from the paper:

Rituximab may serve as an effective therapeutic agent
for ameliorating the symptoms of CFS

They said this in 2009.

Edit. I emailed Fluge about this, and I emailed Hokama about his prediction coming true. Maybe they can help each other.

 

[Levi]

Well,

It would certainly be interesting to see a follow-up study using an ME/CFS patient subset that blood tests as having significantly elevated for ACAs of immunoglobulin M isotypes. A correlation tying patient improvements with Rituxumab treatment strongly to that subset would generate lots of interest. Of course, it would all need to be double-blinded. I don't really know how you would do that tho since most patients already know if they have ACL antibodies. Right?

Here's a quote from the paper:
They said this in 2009. I think it would be important for the Norwegian team to know about this paper. Is anyone here in touch with them??? And btw, please don't assume they know already. This paper is not in the mainstream of CFS knowledge, nor can we assume they found it by searching.