Got treatment in the EU and doing well starting remission

[SK2018]

Sorry excuse my brain fog what is "MM" again?

My step-daughter's biological mother died of MM when she was two yrs old so I am familiar w/the illness b/c of this connection but had not heard of the drug that Shawn mentioned prior to this thread. I think a lot of these drugs will eventually be re-purposed for autoimmune conditions in addition to cancer but it will take a long time. And I am very sorry to hear about your dad and know what a horrible illness MM can be.

 

[Gingergrrl]

Sorry excuse my brain fog what is "MM" again?

It's Multiple Myeloma and several posts back you had mentioned "Bortezomib" so I Googled it to see if it was FDA approved for anything in the U.S. and it is approved for Multiple Myeloma (MM). At this point, I don't think it is being used off label for autoimmune diseases but am sure it will be some day.

Rituximab is approved for RA (Rheumatoid Arthritis) and several other AI diseases in the U.S. so using it for other auto-antibodies is not a stretch as I suspect it would be w/some of these other treatments (at this point in time). I wish we could fast forward and speed up the science by a few years...

 

[Kenny Banya]

EHIC covers up to 60-70% in most cases so until I get the bill I won't know the exact amount for sure,can update later at the time.

Thanks. I am contemplating overseas travel & financing it out of pocket.
We have no 'off label' medical treatment in Australia

 

[SK2018]

It's Multiple Myeloma and several posts back you had mentioned "Bortezomib" so I Googled it to see if it was FDA approved for anything in the U.S. and it is approved for Multiple Myeloma (MM). At this point, I don't think it is being used off label for autoimmune diseases but am sure it will be some day.

Rituximab is approved for RA (Rheumatoid Arthritis) and several other AI diseases in the U.S. so using it for other auto-antibodies is not a stretch as I suspect it would be w/some of these other treatments (at this point in time). I wish we could fast forward and speed up the science by a few years...

Ok thanks for clarifying , I had confused it for "Mollarets Meningitus"

 

[Gingergrrl]

Thanks. I am contemplating overseas travel & financing it out of pocket. We have no 'off label' medical treatment in Australia

Kenny, have you been tested for auto-antibodies or would you do the treatments regardless without knowing?

 

[justy]

. The whole ordeal with ME/CFS is that all our test results come back negative, while yours have not.

or have been DENIED such testing

ne of the first advice any person who suspects ME/CFS will get is: "Get all the tests done that you can.

The problem is that, especially in some countries like the UK, we are not given exhaustive testing. My GP has refused a referral to a neurologist. The cardiologist refuses POTS testing. I have seen a rheumy and an endocrinologist who didn't want to know all my symtpoms. My GP has never even asked me about my symptoms. The gastro Dr refused to see me because I wouldn't undergo an endoscopy (long story).

Doctors usually demand all other diseases are either excluded or under control before they will give the ME/CFS diagnosis.

In the NHS they hand out a CFS dx left right and centre. There is NO exhaustive testing.
In fact a European Dr found a speckled ANA titre of 1:160 and my GP in UK blew this off as 'lots of healthy people have that'. Elevated ESR - 'its not important' swollen palpable gland/lump in the back of my neck for 9 years 'were not worried about those particular glands' Elevated IGM (consistently) -'nothing to worry about'.

My IgM is always elevated but I've always been told not to worry about it.

Same.

 

[liverock]

@Shawn Is Bortezomib only available in the EU or also in the US? I will Google it but was curious if you happened to know from all your research?

Am thrilled you are feeling better and your story has inspired me not to ever give up searching for answers (even though you probably don't know that)!

ETA: Just Googled it and it looks like it is approved in the US for multiple myeloma.

@Gingergrrl @Shawn

Margarets Blog, run by an MM sufferer, has a few items on Bortezomib (Velcade) which outlines some interactions with some common supplements and liquids which either :

completely nullified or reduced its anti-cancer effect.

http://margaret.healthblogs.org/oth...gcg-resveratrol-and-egcg/bortezomib-and-egcg/

http://margaret.healthblogs.org/lif...bortezomib/dietary-flavonoids-and-bortezomib/


or increased its effectiveness.

http://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/curcumin-and-bortezomib/

http://margaret.healthblogs.org/lif...in-and-bortezomib/curcumin-bortezomib-and-mm/

Maybe worth bearing in mind when taking Velcade for other uses than MM.

Margaret appears to be able to manage her MM by mostly curcumin without the use of chemo.

http://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/

 

[Gingergrrl]

Thanks @liverock and I am not actually considering Bortezomib and it would never get off label insurance approval at this point in the US. My goal is to get Rituximab approved which will be a miracle if it happens. Am still very curious though to learn about the other meds even if not an option for me at this time.

 

[IreneF]

@IreneF Was the test with elevated results that you took for IgM or something else? My IgM is always elevated but I've always been told not to worry about it.

AFAIK it was IgG, kappa and mu light chains.

 

[Gingergrrl]

AFAIK it was IgG, kappa and mu light chains.

Thanks and was just curious and am bookmarking this in case I ever need it for future reference.

 

[Gingergrrl]

The problem is that, especially in some countries like the UK, we are not given exhaustive testing.

You are being too kind and you guys in the UK are basically not given ANY testing and just given a CFS diagnosis. Of course in many cases the diagnosis is correct but in many others, there is some other underlying disease that will never be discovered.

In fact a European Dr found a speckled ANA titre of 1:160 and my GP in UK blew this off as 'lots of healthy people have that'.

This happens in the US as well and I was basically told by the rheumy that I saw that my ANA of 1:160 speckled pattern (like yours) was nothing and that healthy people could have it. I said yes but one month prior the blood tests from Mayo showed two auto-antibodies and one of them is pretty rare. The rheumy said I was the first person in his entire career that he had ever met who the calcium autoantibody yet he dismissed it as unrelated to the ANA which I thought was insane!

 

[Kenny Banya]

PM me please ,as I don't want prying medical eyes in the UK to know where I am being treated at.

Are you able to at least advise the country?

 

[sorin]

This illness is so new doctors haven't heard of it.

First cases of CFS are reported in the beginning of 1980's (as a coincidence, in the same period with HIV apparition)

 

[sorin]

My step-daughter's biological mother died of MM when she was two yrs old so I am familiar w/the illness b/c of this connection but had not heard of the drug that Shawn mentioned prior to this thread. I think a lot of these drugs will eventually be re-purposed for autoimmune conditions in addition to cancer but it will take a long time. And I am very sorry to hear about your dad and know what a horrible illness MM can be.

What tests should be done to check for Multiple Myeloma?

 

[Valentijn]

First cases of CFS are reported in the beginning of 1980's ....

This is incorrect.

 

[sorin]

Original Diagnosis:
CFS
Re Diagnosis:
Systemic immune dysfunction with NMDA autoimmunity.
Symptoms:
Fatigue,brain fog ,swollen glands ,flu syndromes after physical exertion,vivid dreams,inability to gain cognitive or physical energy after sleep,tingling ,Numbness ,trouble thinking,gait issues,de realization,

Can you give the list of tests you have done and that served as a basis for your doctor to put you the diagnostic of "Systemic immune dysfunction with NMDA autoimmunity." ? And since you have a new diagnostic that means you do not have any more the CFS (which is an exclusion diagnosis). You have an auto-immune disease, but not CFS.

 

[paul80]

Good on you Shawn, if your health is bad enough it's worth taking the risk. Good to hear it paid off.

It's frustrating when your not knowledgeable about any of this and can't read much without getting headaches, so can't really take risks on my own knowledge like you have.

I'm waiting on the trials in Norway before i think about taking action, since they are very soon.

 

[Kenny Banya]

Good on you Shawn, if your health is bad enough it's worth taking the risk. Good to hear it paid off.

It's frustrating when your not knowledgeable about any of this and can't read much without getting headaches, so can't really take risks on my own knowledge like you have.

I'm waiting on the trials in Norway before i think about taking action, since they are very soon.

If there are parallels for Rituximab for CFS, then 'one swallow doesn't make a summer'.
Wouldn't know until at least 12 months treatment

 

[Confined]

The United Kingdom is a disgrace in the treatment of CFS/ME. They basically diagnose you to stop you coming to the doctors and offer no treatment or support. I am glad you have found assistance within the EU.

 

[sorin]

This is incorrect.

Why?