Is there any way I can be treated with rituximab privately?

[Rebecca2z]

Hi @ghosalb, I was prescribed the Rituxan by my doctor at Stanford, he is actually at the Lucille Packard Children Hospital @ Stanford.
(His name is Dr. David Lewis) He is the one who brought up Rituxan, I had never heard of it. When I Googled it I saw that their was some interest in using it for CFS, (That is what brought me to this site) After seeing RTX was being looked at for CFS, I pushed and pushed hard to get my doctor to set it up NOW.

I thought and have thought for many years my CFS is my main problem. No doctor was willing to even talk about CFS, when my autoimmune system began to break down ( 30 years after CFS was dx) only then did I get some help. The year before my CFS appeared in my life I had several lymph nodes that were pretty large and the 1st one removed came back as something called cat scratch fever. Two years straight of high fevers, more large lymph nodes removed and weight loss I was dx with CFS ( at that time it was called Epstein Barr Virus, my titers were the highest UCLA had ever seen- so I was told. )

Five years ago I began looking for a doctor and reading every journal article they wrote and where their passion was in regards to research I wrote to this Dr. Lewis.
He agreed to see me and after 2 years of seeing me going down hill he decided that Rituxan might be a good fit for my issues. (how right he was !)

I wasn't sure that my insurance would cover the Rituxan so I contacted Genetech and filled out a lot of their on-line paper work.
They seemed pretty receptive to helping me get the drug and paying for it. But in the end my insurance paid for it. I believe all my doctor had to do was say to my insurance company the Rituxan is medically necessary. I am not positive but I think the total amount for the 4 rounds of RTX was 45 grand.

I also saw at Stanford a doctor named David Fiorentino, he is in the immune dermatology dept and is a autoimmune disease specialist andin his medical notes he states that "this patient (me) may respond to Rituxan" and he was seeing me for some skin lesions which turned out to be discoid lupus.

I may have these other immune issues but in the back of my mind I was thinking finally we are going to go after what I believe tore me down in the first place CFS !
The RTX did indeed get rid of every single discoid sore and I have been free of those since the Rituxan, EXCEPT in the last two weeks they are back, so yes this has me worried is the Rituxan wearing off. My point with bringing this up is this doctor was considering using RTX for discoid lupus ! Although he could see I was severely fatigued and weak too.

I feel focusing on my other health issues ( almost glad I had those) and never bringing up CFS was what got me the medical care I was deserving of. The most notable improvement in my health is the brain fog, it gone, really gone. Yes the fatigue & weakness is also gone but I have to say I found that brain fog the most debilitating thing wrong with me and to be free of it is enough to send me dancing in the streets !

I just feel awful that people are struggling and wish this RTX would hurry up be found safe and effective for CFS.

I hope my info helps in some small way!

 

[Valentijn]

The year before my CFS appeared in my life I had several lymph nodes that were pretty large and the 1st one removed came back as something called cat scratch fever.

Cat scratch fever = Bartonella. I've got that bugger too, and it's probably still somewhat active. The antibiotics I was taking for Lyme would trigger new striae every time I started on a new one.

It can come from ticks or fleas, or directly from cats. But cats are the primary host for that one type of Bartonella.

Were you ever treated for it? Were you re-tested for it later to ensure it was gone?

 

[Rebecca2z]

@Valentijn, Sorry to hear you have cat scratch fever, I don't think I have ever been re-tested for it. I was given some antibiotics at the time of dx, but a year after that appeared I was pretty sick with fatigue ,weight loss, sore throats , confusion and more abnormal lymph nodes so I went to UCLA and they told me no more antibiotics for me, they even said "we hope you get sick, good and sick and you're not having any antibiotics, we want your body to fight on it's own."
I ran a fever of 102 for I don't know I guess it was like 2-3 years and I got no antibiotics. Now I run a temp of 96.8 - instead of a normal temp of 98.6.

 

[ghosalb]

Hi @ghosalb, I was prescribed the Rituxan by my doctor at Stanford, he is actually at the Lucille Packard Children Hospital @ Stanford.
(His name is Dr. David Lewis) He is the one who brought up Rituxan, I had never heard of it. When I Googled it I saw that their was some interest in using it for CFS, (That is what brought me to this site) After seeing RTX was being looked at for CFS, I pushed and pushed hard to get my doctor to set it up NOW.

I thought and have thought for many years my CFS is my main problem. No doctor was willing to even talk about CFS, when my autoimmune system began to break down ( 30 years after CFS was dx) only then did I get some help. The year before my CFS appeared in my life I had several lymph nodes that were pretty large and the 1st one removed came back as something called cat scratch fever. Two years straight of high fevers, more large lymph nodes removed and weight loss I was dx with CFS ( at that time it was called Epstein Barr Virus, my titers were the highest UCLA had ever seen- so I was told. )

Five years ago I began looking for a doctor and reading every journal article they wrote and where their passion was in regards to research I wrote to this Dr. Lewis.
He agreed to see me and after 2 years of seeing me going down hill he decided that Rituxan might be a good fit for my issues. (how right he was !)

I wasn't sure that my insurance would cover the Rituxan so I contacted Genetech and filled out a lot of their on-line paper work.
They seemed pretty receptive to helping me get the drug and paying for it. But in the end my insurance paid for it. I believe all my doctor had to do was say to my insurance company the Rituxan is medically necessary. I am not positive but I think the total amount for the 4 rounds of RTX was 45 grand.

I also saw at Stanford a doctor named David Fiorentino, he is in the immune dermatology dept and is a autoimmune disease specialist andin his medical notes he states that "this patient (me) may respond to Rituxan" and he was seeing me for some skin lesions which turned out to be discoid lupus.

I may have these other immune issues but in the back of my mind I was thinking finally we are going to go after what I believe tore me down in the first place CFS !
The RTX did indeed get rid of every single discoid sore and I have been free of those since the Rituxan, EXCEPT in the last two weeks they are back, so yes this has me worried is the Rituxan wearing off. My point with bringing this up is this doctor was considering using RTX for discoid lupus ! Although he could see I was severely fatigued and weak too.

I feel focusing on my other health issues ( almost glad I had those) and never bringing up CFS was what got me the medical care I was deserving of. The most notable improvement in my health is the brain fog, it gone, really gone. Yes the fatigue & weakness is also gone but I have to say I found that brain fog the most debilitating thing wrong with me and to be free of it is enough to send me dancing in the streets !

I just feel awful that people are struggling and wish this RTX would hurry up be found safe and effective for CFS.

I hope my info helps in some small way!

Hi Rebecca - you are a goldmine of information....you have no idea how helpful this information is.....too bad I am in the east coast.....I am thinking seriously to move to CA, stay there one year and try RTX (health permitting and if I could get some help with cost of the treatment).
So sorry that you had to go thru so much....but very impressed that you never had depression....you are such a good example....I think your attitude to help others also boosting your immune system....My recovery from last relapse started amazingly when one day I started feeding desperately hungry wild cats outside my home despite lot of opposition from neighbors.
Anyway, thank you again for your detailed response. Wishing you continued recovery. You deserve it more than anyone.

 

[Rebecca2z]

@ghosalb, I am so happy my long and detailed post wasn't a turn off !! ( I am sure it is for many who have brain fog, believe me I do understand being so sick you can't wade through these long posts) I find it hard to write short answers.. lol
I keep hoping my story will help with getting people some proper medical care. Maybe even inspire a doctor to think a little outside the box.

I wish there was some place on the East Coast that could work with you, moving to the West coast would be a big undertaking especially with your health being compromised.

I do think helping others is healing, but what motivates me is the memory of the suffering that I have gone through, it is indescribable. I can't stand that others are living a lesser life and together we are better !

Thank you for your kind wishes and I hope you can get the help you deserve.

 

[Sallyagerharris]

Hi Rebecca. Also just mirroring previous comments about how valuable the information is that you are posting. I was just explaining to a friend earlier about how much of a roller coaster ride this is and how it dominates my life. My hubbie and friends are zip wiring and then walking up Snowdon in Wales his weekend and it struck me that I just focus totally on ME, wondering how much more I might be able to do to help myself.

1.5 years ago when I gave up work for the 2nd time as was just so horribly sick, I then did an elimination diet prescribed by doctors for severely ill children. Sadly I am fine with food as was rather hoping a huge reaction to something might make a difference. But I put together an eating plan based around ME which is highly nutritious and has become also a good hobby. I almost became a vegan but might try that out in a year or so as was not mentally ready this year.

My idea being at least I can keep my body through food as healthy as possible for now and long term.

Hope is a wonderful thing to have and I hope that rituxamib works for you. I said earlier that my fear is that one day when I can get rituxamib that it then will not work. But it would be good to get to that stage.

One day I hope I can walk a lot of just more than now so I can resume my previously active outdoor life. Luckily while friends and hubbie are walking and zip wiring I at least have a weekend cottage with a hot tub in the garden. My hot tub at home is a life saver in not only being outside but soothing aches and pains. A good place to read as well.

Wishing you continued better health.

Sally

 

[Sushi]

Should I assume that there are now two locations/doctors (OMI/Dr. Kaufmann and Stanford/your doctor) in California for Rituxan treatment ?

Rituximab is offered all over the US and Europe--just not for ME/CFS (except for Drs Kaufman & Kogelnik).

I believe all my doctor had to do was say to my insurance company the Rituxan is medically necessary.

"Medically necessary" is our problem with getting insurance coverage as ME/CFS, so far, is not one of the conditions for which it has been justified.

I may have these other immune issues but in the back of my mind I was thinking finally we are going to go after what I believe tore me down in the first place CFS !

I feel focusing on my other health issues ( almost glad I had those) and never bringing up CFS was what got me the medical care I was deserving of.

Unfortunately, that is probably the key to Rebecca getting successful treatment--she never brought up ME/CFS but had other health issues for which Rituximab was considered justified.

 

[ghosalb]

Totally agree Sushi.....Rebecca basically showed us how to get insurance to pay for it....now we have to convince Drs. Kaufmann and Kogelnik or Rebecca's doctor to say something similar w/o mentioning CFS...just mention symptoms and say it will help....will be interesting if it will work for some with some HMOs. I know my doctor won't do it because he does not believe in it.

 

[Rebecca2z]

@Sallyagerharris - reading about your cozy spot at the cottage sounds lovely and it so great to hear how you can appreciate it while others are out doing what you'd rather being doing if your health was better. I believe it is this ability to appreciate what we have and not what we don't have that gets us through this nightmare.

While I do believe diet plays a very important role in our health ( of course) but I spent years on all kinds of de-tox diets and candida free diets with no changes in my health. Now I look at my diet for the last 12 months on a central feeding line in my arm and I think wow I am a vegan now !

I know at 61 years old I didn't think the RTX would work on things like my 30 + years of brain fog and fatigue but it did and in a big way.
So I want to say don't give up, age is only a number. What problems I have seen in regards to age is that many doctors commonly give up on the 60 + group and don't dig as deep to see what is going on especially in CFS and they certainly don't want to treat, they are comfortable with just letting you struggle on as you always have. This is a shame and a missed opportunity to make a real difference in persons life.

You would think this would be exciting to doctors. I know my doctors are very excited to see the amazing visual as well as physical changes that have taken place in me. My doctors just smile and shake their heads in disbelief- so cool to watch that !

I don't know enough about RTX and it's ability to work on a certain age group but I am living proof that my age didn't factor into the RTX helping my 30+ years of brain fog & fatigue. ( no matter what was causing it ) Hang in there you ARE going to turn this around.

As I said ~ together we are better !
Hugs,
Rebecca

 

[Rebecca2z]

Yah @ghosalb, don't you guys have joint pain ? Can't you focus on that with your doctors. There are many many people who are sero-negative for RA.

RTX made all my joint pain go away so I know it wasn't my Ehlers Danlos causing that.

 

[ghosalb]

Yah @ghosalb, don't you guys have joint pain ? Can't you focus on that with your doctors. There are many many people who are sero-negative for RA.

RTX made all my joint pain go away so I know it wasn't my Ehlers Danlos causing that.

Hi Rebecca - good point...did you get prior permission from you insurance before infusion...if so, what symptoms/decease were used to say it is medically necessary.....was it in writing....who is your insurance co ? (if it is ok to ask...because soon I have to decide on what insurance to go with).
Pardon me for pestering you with questions. Thank you. Good thing you like to write long answers.

 

[BurnA]

The adverse events can be immediate or occur later - days, weeks, or years later.

Can you elaborate on the adverse events ?
I know hypogammaglobulenaemia has been discussed before but are there other serious side effects that we need to know about ?
Is there any way to reduce the likelihood or is it purely down to individual patients response and subsequent management ?
Thanks.

 

[deleder2k]

Can you elaborate on the adverse events ?
I know hypogammaglobulenaemia has been discussed before but are there other serious side effects that we need to know about ?
Is there any way to reduce the likelihood or is it purely down to individual patients response and subsequent management ?
Thanks.

Late-onset Neutropenia is a side effect. Not very uncommon. I think it happened to two or three patients in the RTX trial at Haukeland.

Late-onset neutropenia (LON) is emerging as a common adverse effect to rituximab therapy owing to widespread use of this drug in the treatment of B-cell lymphomas and autoimmune diseases. However, the true incidence and mechanisms are not fully understood. LON has been reported in 5–27% of rituximab-treated lymphoma patients. Similar figures apply for autoimmune patients but they appear to have more infections during the neutropenic period. Recent reports imply that host factors may play an intriguing role for development of LON, for example, polymorphisms in FCGR3. Pronounced B-lymphocyte depletion and lower serum IgM, as reported in LON patients during the period of neutropenia compared with matched controls, may play a role for understanding the mechanisms and risk stratification for emergence of LON.

Read about it here: http://www.medscape.com/viewarticle/754000

 

[BurnA]

And we do not yet know that rituximab is effective.

Is this stretching things a bit ? if not how is the phase II double blind test explained ? I know numbers were small but my understanding is that while we may not know exact response rate, we did learn that rtx is effective .

 

[BurnA]

Rituximab was approved for use in RA in about 2007. The rationale for its use in autoimmunity is indeed still not well understood by many physicians. But when there are hundreds of practitioners using a drug and regularly meeting and exchanging experience practical issues tend to get sorted out. The problem for ME is that physicians who might treat it may not have this experience.

This is true, the problem is it may take years for the practical issues to be sorted but that aside at some point some doctors will have to step up to the plate and treat their first ME patient with RTX. This is where I see the issue. What will convince them the time is right to treat ME patients with RTX? ( assuming postive phase III results )
It's ( relatively) easier and safer to do it when everyone else is doing it as you mention, but how do we get to that point ?

 

[jimells]

we have to convince Drs. Kaufmann and Kogelnik or Rebecca's doctor to say something similar w/o mentioning CFS...just mention symptoms and say it will help.

Unfortunately the medical industry does not work that way. In billing, everything revolves around the diagnostic code. No one cares about symptoms, just the code and does it match the proposed procedure, each one of which has its own code as well. If one has a toenail removed without a toenail diagnostic code, they won't pay. It doesn't matter how much the toe hurts.

It is now an entirely separate profession to be an expert on how to code insurance claims so that they will be accepted.

 

[jimells]

You would think this would be exciting to doctors. I know my doctors are very excited to see the amazing visual as well as physical changes that have taken place in me. My doctors just smile and shake their heads in disbelief- so cool to watch that !

Will we be able to read about your case in a journal?

 

[jimells]

Which is a reason not to act hastily and I agree that we should not agitate at this stage but, on the other hand, there is a 'failing to plan is planning to fail' argument. It makes sense to me to be thinking about this now.

We know CDC and NHS are not going to promote new ideas and treatments, and neither are the drug or insurance companies, so that only leaves patients and doctors. I'd like to see an effort to send knowledgeable folks to a rheumatologist conference or two. Doctor-to-doctor education in informal settings could spread the word without upsetting the bureaucrats.

I know we are told everyday, over and over that Twitter and Facebook and Google and Skype are going to save the world, but they can't beat in-person discussions, so personally I am not interested in Twitter campaigns and signing computer petitions.

It seems to me that we should be able to raise enough money right here on our forum to send someone to a conference. Please forgive my presumptuousness @Jonathan Edwards but I can't help thinking you would be a fine spokesman for us and probably a very entertaining speaker to boot! I'm sure there are other folks who would be equally effective - anybody who is willing, we should try to fund them.

 

[Rebecca2z]

@ghosalb yes my doctors got a prior approval for RTX. I have no idea how they coded it or what they wrote. I had at the time of my RTX treatments Blue Cross, through pers choice. My Stanford team for some reason has the best luck with getting me certain treatments and blood work.

Like for instance, I have to have my B-cells checked every 3 months, my local doctor can't figure out how to code that, several things have been tried but for what ever reason they can't get my insurance to pay for that blood test. They have even used the same code at Stanford- doesn't fly.

So I have go all the way to Stanford for that one blood test. Now this trip is 5 sometimes 6 hours to get there and 7 hours to get home. I am half dead from that trip. But it's worth it to get the B-cells checked.

Now my insurance is switching to Medicare as primary ( hubby retired) I am not sure if Medicare is going to pay for things like RTX and B-cells checks. Kinda nervous about this. I think teaching universities have much better luck in getting these things ordered.

@BurnA, I wonder the same thing, what is it going to take to treat ME/CFS with RTX. They sure don't let the people with RA suffer with joint pain, they throw these types of drugs ( and lots of new ones ) at them all the time.

@jimells, you are spot on, it's all about the codes. As I said above the teaching universities have very good luck with this. It's almost like they get a free pass, (which actually I believe they do)

( I see you're from Maine, I am too~ Orono)

I have no idea if anything about my case will be in journal !

 

[jimells]

( I see you're from Maine, I am too~ Orono)

I live near Houlton - only two hours from the metropolis of Bangor - well, it seems like a "metropolis" compared to Houlton!