Throwin up White Flag on Rituxan Also! :(

[Sherlock]

maybe its important to test and treat active infections before one starts rituximab and knocks out part of the immune system.

active infections would pretty much be part of the exclusion criteria for any RTX trial on clinicaltrials.gov, unless the supposed infection is the one being treated, of course.

 

[vli]

I think fixing the immune system wont cure us as many of these infections are just to ingrained, we need to treat all the infections and then fix the immune system afterwards to stop them from reactivating etc. I think fixing the immune system is whats going to keep us functioning at a better level but its not going to get us to that level, only directly treating those active pathogens will. [my bold]

Theres many questions just not alot of answers. the montoya and lipkin pathogen study i think will be interesting. Most healthy people test positive for the same pathogens many of us suffer with but our infections are active. They need to be able to distinguish between active and dormant infections.

Amen and amen heaps.

 

[Young&sick]

I am writing in response to the first message in this thread.

I too have reacted terribly to Rituxin. I also have the worst pain and of every type.

I wanted to post sooner but I'm emotionally and physically devastated.
The worst part was that my doctor who gave me Rituxin was extremely neglectful once I began to take a turn for the worst. If I hadn't had other doctors I would not have ever been diagnosed in time.

For me, I do regret it. Being on Rituxin led to me getting two serious infections at the same time, c. Diff, and the very weird and rare Actinomyces. My pain is off the charts now and I had to have lung surgery due to the innumerable lung lesions. Because I have ME I ended not recovering and my ribcage now hurts like hell along with an air pocket and many scars.

I was hospitalized for a week back in Febraury/March. I finished my 5th Rituxin dose Dec 30. The past year has been worsening hell. I have thrown up more in the past year than I have my entire life.

I feel stupid and naive but the worst is feeling powerless.

My heart's ejection fracture after Rituxin is at 45% and I am only 26. I hate this disease which led to my desperation for treatment. I've also tried Valcyte which did nothing.

I wish that this had worked but for me it did not.

Whoa.

Sorry to hear all this. Did you have any of the infections going into treatment? Did your doc test for them or know about them? Im really, really sorry to hear this.

 

[Ben Cook]

thanks for sharing your experiences, it helps many people to make a more informed decision.
I think your experience shows how important it is to get people into the right sub sets for treatment.
I hope u start to feel better soon from this experimental treatment.

cheers!!!

Mate, that is bloody awful. I'm currently in the USA doing my 3rd Rituxan infusion. Haven't got around to adding the Valcyte as the other antiviral I tried 6 months ago induced a nasty reaction (acute bone pain) & felt very ill and depressed whilst taking it, so slowly, slowly. So far not responding but not here to write about me but about your nightmare. I can't believe you are going through such misery at age 26! That is brutal. So unfortunate, don't know what I can say but reckon its great you had the guts to give both a go. It sounds like you are in a no option situation as well, can't win either way; but brave are you for hanging in there buddy!

 

[dsdmom]

New information has come my way that I thought I should share. I recently found out that I have low igg and igm, and my immunolgist is classifying it as CVID. Which means now I need ivig. Not entirely bad since I was thinking of restarting ivig anyway and supposedly insurance now can not deny it. Although that's yet to be seen.

At any rate, it's probable that the Rituxan caused the low immunoglobulins - there's quite a bit of literature on this happening. Also could explain why I was so sick all winter - ridiculously sick. So just another head's up for people that this is another possible side effect. Might be worth getting your immunoglobulins tested before starting Rituxan so you know where you're at.

 

[lansbergen]

New information has come my way that I thought I should share. I recently found out that I have low igg and igm, and my immunolgist is classifying it as CVID. Which means now I need ivig. Not entirely bad since I was thinking of restarting ivig anyway and supposedly insurance now can not deny it. Although that's yet to be seen.

At any rate, it's probable that the Rituxan caused the low immunoglobulins - there's quite a bit of literature on this happening. Also could explain why I was so sick all winter - ridiculously sick. So just another head's up for people that this is another possible side effect. Might be worth getting your immunoglobulins tested before starting Rituxan so you know where you're at.

I said from the beginning, I will not use it. I want to keep my not infected memory cells.

If there would be a med that could discriminate between infected and not infected cells, I would consider it.

 

[Sherlock]

I said from the beginning, I will not use it. I want to keep my not infected memory cells.

If there would be a med that could discriminate between infected and not infected cells, I would consider it.

That particular theory for using RTX presumes that there is some infection in the B-cells, which as far as I know has zero proof. That theory is also at odds with the M&F theory of autoantibodies, which also has zero proof. The original M&F case series showed a fairly quick response, which was at odds with the delayed onset of response in the subsequent M&F trial - the delayed onset was why M&F postulated about autoimmunity, since after killing off the B-cells you have to wait for the antibody-emitting plasma cells to die off on their own (plasma cells don't have the CD20 surface molecule that is targeted by RTX).

 

[lansbergen]

B memory cells have the CD20 molecule.

http://en.wikipedia.org/wiki/CD20

CD20 is expressed on all stages of B cell development except the first and last; it is present from late pro-B cells through memory cells, but not on either early pro-B cells or plasma blasts and plasma cells.

Not all infections can be tested. As long as there is no test for a pathogen and it is known that pathogen infects certain cells I dont care ït is claimed there is no proof in a given situation.

 

[Jacque]

New information has come my way that I thought I should share. I recently found out that I have low igg and igm, and my immunolgist is classifying it as CVID. Which means now I need ivig. Not entirely bad since I was thinking of restarting ivig anyway and supposedly insurance now can not deny it. Although that's yet to be seen.

At any rate, it's probable that the Rituxan caused the low immunoglobulins - there's quite a bit of literature on this happening. Also could explain why I was so sick all winter - ridiculously sick. So just another head's up for people that this is another possible side effect. Might be worth getting your immunoglobulins tested before starting Rituxan so you know where you're at.

Hmmm I was also told i had the CVID before Rituxan... Wonder if I should try that as well ... please keep me posted on how you do on it!! Thanks for info...

 

[liquid sky]

Sorry for the ones who have had a bad reaction to Rituxan. They are finding that this drug is toxic to both the heart and lungs. Unless you are a quick responder, I can't see being able to continue these infusions for years. I totally understand taking the chance with this drug and needing some relief. I've been there.

We need drug trials done properly and payed for by the drug companies, instead of being hung out there alone to try and figure how to continue to endure this illness. This is what the those reading this thread should pick up on. Our lives are no less precious than those with RA, MS, lupus, etc.

 

[dsdmom]

Hmmm I was also told i had the CVID before Rituxan... Wonder if I should try that as well ... please keep me posted on how you do on it!! Thanks for info...

If you had Cvid were you doing ivig? Did your dr know about the Cvid? I ask because there are warnings about starting someone on rituxan if they already have hypogammaglobulinemia.

I did ivig for two years for autonomic neuropathy through my neurologist before doing rituxan. It helped but was no cure. So for me going back to ivig will be interesting. Hope I do ok on it this time around.

 

[Jacque]

Dr. Kogelnick diag me with the CVID...and No I never did IVIG... are you doing injections or is that done with infusion? wonder if I should look into that? And autonimic neuropathy is a new term for me too... need to look that up as I suffer with INTENSE neuropathy..

I did do gamma globulin shots a long time ago...and not much change...but maybe didn't do enuf or long enuf...is that the same thing? Duh... You all are so much more studied up on all these terminoligies than I am...

 

[IreneF]

Dr Kogelnik uses low NK cell function as the basis of the CVID diagnosis. IgG treatment won't affect that.

He pronounced my immune system otherwise healthy. I'm wondering what kind of testing for pre-existing conditions other people may have had or not had. I had a minor infusion reaction the first time, but no problems since then. I've been healthy most of my life.

Rituxan is approved for RA as well as lymphoma and it's been around for a few years, so physicians ought to be aware of potential problems.

 

[dsdmom]

Dr Kogelnik uses low NK cell function as the basis of the CVID diagnosis. IgG treatment won't affect that.

He pronounced my immune system otherwise healthy. I'm wondering what kind of testing for pre-existing conditions other people may have had or not had. I had a minor infusion reaction the first time, but no problems since then. I've been healthy most of my life.

Rituxan is approved for RA as well as lymphoma and it's been around for a few years, so physicians ought to be aware of potential problems.

You are right - Dr. Kogelnik's classification of CVID is clever but it is not indicative of true CVID, which is affected by immunoglobulin levels.
http://primaryimmune.org/about-prim...pes-of-pidd/common-variable-immune-deficiency
http://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency

I just wish I had had my immunoglobulins tested before ever starting ivig (pre-Rituxan) so I could have some idea if this is something I've had or if it is just since Rituxan. As far as testing goes, here's the list that was required of me:
CBC + differential
PPD (for tuberculosis)
CXR
CRP
ACE
Hepatitis panel
Lymphocyte profiling – flow cytometry

 

[Jacque]

You are all a lot more read up on all on this than I am... or maybe I read it all..and just frikkkkkin forgot it the next day... it is just all too much for me. I do know my cognitive has done down hill a lot more since the Ritxan...but that could just be I am over another year older... I feel like a ship with 10 holes in bottom of the boat - and my compass is broken... just floating in circles right now...just trying to stay afloat... Just sooooooo tiiiiiiiiiiiiired, and something viral is kicking my butt right now... HARD.

 

[IreneF]

You are right - Dr. Kogelnik's classification of CVID is clever but it is not indicative of true CVID, which is affected by immunoglobulin levels.
http://primaryimmune.org/about-prim...pes-of-pidd/common-variable-immune-deficiency
http://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency

I just wish I had had my immunoglobulins tested before ever starting ivig (pre-Rituxan) so I could have some idea if this is something I've had or if it is just since Rituxan. As far as testing goes, here's the list that was required of me:
CBC + differential
PPD (for tuberculosis)
CXR
CRP
ACE
Hepatitis panel
Lymphocyte profiling – flow cytometry

You are right - Dr. Kogelnik's classification of CVID is clever but it is not indicative of true CVID, which is affected by immunoglobulin levels.
http://primaryimmune.org/about-prim...pes-of-pidd/common-variable-immune-deficiency
http://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency

I just wish I had had my immunoglobulins tested before ever starting ivig (pre-Rituxan) so I could have some idea if this is something I've had or if it is just since Rituxan. As far as testing goes, here's the list that was required of me:
CBC + differential
PPD (for tuberculosis)
CXR
CRP
ACE
Hepatitis panel
Lymphocyte profiling – flow cytometry

So how did your doc determine you needed IVIG without testing your immunoglobulins?

 

[smoothfox99]

I am also sorry to hear of your experiences RachME. It was one of my concerns that Ritux would knock out perhaps the body's ability to fight infection and one of the things I would need reassuring about should this drug be formally approved for use. I dare say that not everyone will experience the increased risk - but it is a risk I think nonetheless.

When you were in hospital, I'd be interested in learning what the doctors' there thought about the effect of Ritux and your resulting infections. Did they make this link? Thanks.

Hope you begin to feel a little better soon

Thanks for your response. It takes me awhile to answer as I am quite under the weather these days. To answer your question the Doctors at Stanford thought that the Rituxin comprised my immune system as it does in everybody and they treated me as an immune comprised patient. I was quarantined while I was there. The nodules in the lungs imply TB and I had to get that clear first. Then getting the Cdiff was from immune compromise and Actinomyces as well as they thought I had gotten it over thanksgiving-xmas. I'm trying to remember what else they thought about it I didn't have the biopsy results while I was in the hospital as it took a few weeks to grow them.

Hope you are having a lovely Sunday, and I wish you all the best. =)

 

[smoothfox99]

RachME65--do you know what tests your doc ran before you started the infusions? Is he a specialist in anything? And what were the symptoms of your lung infection?

The reason I'm asking is because I had an infusion three weeks ago.

Thanks

Hi Irene,

Sorry I didn't get to respond sooner. I am having a rough time. Let's see I was a patient of Dr. Kogelnik since 2009-2013. I will be getting a copy of my records from him as I am changing doctors, but he ran the thorough tests I believe since he is the CFS/ME doctor and he worked at Stanford as infectious disease I believe before that.

The symptoms of my lung infection were like everyday CFS/ME except my fever spiked from 100 to 102.5 and I was shivering the pain in my lung/upper abdomen hurt so bad. The week before I was hospitalized I did get a really weird differing sharp stabbing 10/10 pain to my left shoulder. My pulmnologist said that deferred shoulder pain is the sign of a lung infection. But my blood tests showed a sed rate of 119. Then my lung CT read as "innumerable lung nodules" so those wore my symptoms and tests that led to the Actinomyces infection.

Hope you have a lovely rest of the weekend. =)

 

[smoothfox99]

Whoa.

Sorry to hear all this. Did you have any of the infections going into treatment? Did your doc test for them or know about them? Im really, really sorry to hear this.

Hi young&sick, Thanks for the response. I always had a low grade fever with my CFS. Dr. Kogelnik treated me and tested me for all the infections he thought I could have had before getting the infusions. I believe I didn't have these infections going into it, but I might still have something that has been causing a 100 fever in me since 2009. I did antivirals in 2010 to no avail either. Now I am on 1-2 years of penicillin for the Actinomyces so I'm hoping that may wipe out whatever else exists. hope u have a happy day =)
Rachel

 

[smoothfox99]

Mate, that is bloody awful. I'm currently in the USA doing my 3rd Rituxan infusion. Haven't got around to adding the Valcyte as the other antiviral I tried 6 months ago induced a nasty reaction (acute bone pain) & felt very ill and depressed whilst taking it, so slowly, slowly. So far not responding but not here to write about me but about your nightmare. I can't believe you are going through such misery at age 26! That is brutal. So unfortunate, don't know what I can say but reckon its great you had the guts to give both a go. It sounds like you are in a no option situation as well, can't win either way; but brave are you for hanging in there buddy!

Hi Ben, thanks for your response. i'm so sorry you are having a tough time too. i didn't do well on valcyte. it is tough. these drugs are very powerful but our symptoms are brutal and neverending. I appreciate your kindness! =) really helps keep me going when I feel so alone surrounded by LA Healthy people. I definitely felt the desperation pressing down hard this year as I keep getting worse each year when I think it can't POSSIBLY get worse.

Every birthday and winter holiday (mine are exactly 6 months) I don't know I always think to myself by Christmas I'll be better. Next year I'll be well again. I want it to go away overnight because it came overnight for me.So how have your infusions been going? Symptoms worsen? Have a lovely day =)
Rachel