Is Anyone Else Scared of Rituxan?

[Sushi]

Guys, you need to chill.

Yes, please! Can we get this thread back on topic? I don't think we're going to find much further understanding with the diversion that has been taken in the last few posts.

 

[Snow Leopard]

Please go ahead and ask Dr. Klimas, Jason or Natelson yourself and they will tell you the same thing they told me.

I have had this conversation with one of those people, along with young scientists in the field. They tell me that the main limitations are the lack of opportunities to do ME/CFS research in the first place - eg lack of funding for pilot studies, lack of capacity to do so - as a young researcher you can't just do ME/CFS in any place, there are very few places which have sufficient expertise both to start and to continue research. Community organisations and charities can develop a fund for pilot studies (there is one private charity that funds pretty much all of the pilot studies in Australia), but unless those researches can continue in the field, then it doesn't amount to much. This is why the development of specialist centres, including one within the NIH are so important.

Secondly, have you noticed that the NIH has given the more or less the same amount of money for research year in, year out? This is because although they don't like to admit it, they have a fairly constant budget and people would get in trouble if the budget was doubled or quadrupled.

ME/CFS is the exception to the rule and this is why we need leaders within the NIH and elsewhere to go above and beyond what is done presently. Akin to what was done in the past for diseases like AIDS, MS and others to build research capacity.

 

[Valentijn]

Secondly, have you noticed that the NIH has given the more or less the same amount of money for research year in, year out? This is because although they don't like to admit it, they have a fairly constant budget and people would get in trouble if the budget was doubled or quadrupled.

A big factor in this is that we're currently stuck in the Office of Research on Women's Health at the NIH, which does not have much involvement with biological research, if any. The seem to be focused entirely on the social aspects of being a woman in the context of health and the health care system. They also are not funded to conduct serious research, unlike the Institutions which handle every other distinct disease.

I think getting out of ORWH is going to be essential if any progress is to be made. Even aside from funding issues, they do not seem to have the personnel capable of handling any aspect of a complex disease.

 

[Undisclosed]

This thread has become increasingly off-topic. It's about Rituxan, not about the general government funding of ME/CFS etc. --this is a whole other topic.

There have been some personal attacks on this thread that have been removed.

While you may not agree with a member's opinion, we need to keep our responses respectful and avoid personal attacks.

An opinion is just a belief, idea, or judgment a person has for a particular topic. Most opinions are formed via life experiences, research, experimentation, etc. Rather than focusing on the personal attributes of the member you disagree with, discuss why you disagree with them. As an example, rather than implying a member is being dishonest, why not explain why you disagree with their statements -- something like 'I feel differently about this because... .", rather than 'You are ... ."

Try not to read between the lines and speculate what a member means, ask for clarification. Miscontruing what a member has said can lead to personal attacks and in the case of this thread, it has.

If we all respect opposing or differing opinions, communication will remain respectful. Please avoid making negative personal comments just because you disagree with another member. And please, let's get back to the original topic of this thread. The thread can be split so the discussion of government funding etc. can continue (If we can find the time).

Thank you.

 

[ebethc]

I have serum sickness right now from Enbrel, a biologic, with black box warnings.

These meds freak me out.

what is "serum sickness"? what is a "biologic"? what is a "black box warning"?

 

[out2lunch]

Biologics like Rituxan scare the @#$% out of me.

I don't care if I ever reach the point where Rituxan is my treatment of last resort.

With my selective IgM deficiency and the growing number of superbugs in our environment, taking Rituxan would become my last treatment. Period.

 

[Marky90]

Biologics like Rituxan scare the @#$% out of me.

I don't care if I ever reach the point where Rituxan is my treatment of last resort.

With my selective IgM deficiency and the growing number of superbugs in our environment, taking Rituxan would become my last treatment. Period.

You can take ritux with immunoglobulins.

 

[Misfit Toy]

what is "serum sickness"? what is a "biologic"? what is a "black box warning"?

Okay, serum sickness happens like a major delayed reaction after a medicine. Usually a venom made from an animal but can be an antibiotic. I developed it over a week after the initial shot. "Black box" warnings usually are serious warnings, like..."can cause death." A biologic is basically anything that suppresses the immune system and lower your defenses.

 

[Misfit Toy]

You can take ritux with immunoglobulins.

You can take immunoglobulins like IGG, which doesn't do much for IGM...if you can handle it. I did actually 6 months, I always say 5 but 6 months of IGG and was sicker....than....a....dog.

I would rather die than try IVIG or IGG subQ again.

It can be the greatest thing ever, but man so many on IGG get aseptic menengitis...one more thing we don't need and no matter how much water, prednisone, benadryl they take...I see everyday on the CVID board people in the hospital from their IGG treatments.

 

[Marky90]

You can take immunoglobulins like IGG, which doesn't do much for IGM...if you can handle it. I did actually 6 months, I always say 5 but 6 months of IGG and was sicker....than....a....dog.

I would rather die than try IVIG or IGG subQ again.

It can be the greatest thing ever, but man so many on IGG get aseptic menengitis...one more thing we don't need and no matter how much water, prednisone, benadryl they take...I see everyday on the CVID board people in the hospital from their IGG treatments.

Im sorry you had a bad experience, as I understand you were at high risk due to your CVID (but even then it is rare, and more common in SLE)

From what i have read in the literature, aseptic meningitis after IVIG is really rare:

"The effectiveness of IVIG is well documented, and generally considered as a safe therapy. Most frequent adverse effects are mild and transient, occurring in less than 5% of patients,[3] which include headache, flushing, fever, chills, myalgia, fatigue, dyspnea, back pain, nausea, vomiting, diarrhea, blood pressure changes, and tachycardia. Most resolve within an hour of stoppage, slowing of infusion, and respond to symptomatic treatment. More serious effects are rare and include anaphylaxis, hemolysis, hepatitis, thrombosis, arthritis, and renal failure. Though aseptic meningitis has also been reported as a serious complication following IVIG therapy.[1,4,5] It is a self-limiting condition and easily manageable, however panic and dilemma prevails for the initial few days. It is a unique clinical dilemma in patients receiving IVIG therapy who have underlying diseases which predisposes them to central nervous system complications, such as meningitis (in immunodeficiency) and intracranial bleeding (in ITP).[5]"

Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296420/

Lastly this:

"Slow infusion of low-concentration IVIG products and hydration, especially in high-risk patients may help prevent aseptic meningitis. The first dose of total 2 g/kg given over 5 days at a 3% solution (0.4 g/kg/day); followed by the next infusion of 2 g/kg given over 3 days; and if successful, reduced to a 2-day regimen and concentration increase to 12% can be suggested. In addition, prehydration, paracetamol, and use of antihistamines like cetrizine can be helpful; symptomatic therapy alone may be sufficient.[10]

In conclusion, recognition of aseptic meningitis as an adverse reaction following IVIG therapy is important as it may be treated effectively. It allows continuation of IVIG treatment avoiding unnecessary CT scans and lumbar puncture studies."

 

[Misfit Toy]

Hey, @Marky90 -have you tried IVIG? You know Rebecca had aseptic menengitis from it, right? It is not rare. I know you are quoting a website/internet...which really means nothing to me. I am not trying to offend you. Why do I feel that way? Because I have Primary Immune Deficiency, am on CVID boards and have attended conferences and I have friends who are on IVIG and are still so sick. My one friend doesn't have CFS. She has to take it or the CVID will kill her, but it just caused a DVT in her chest....yes, IVIG did that. She is still on it.

It's a very thick substance and that's why the most common side effects are migraines..the brain can't handle it. It's thickness. The preservatives cause many problems for people. IGG tastes like thick salt water..that is what it is like.

Migraines, nausea and vomiting, diarrhea, and extreme fatigue are so common with IVIG along with rashes. Mild it says above......No...not at all.

I have about 50 friends on IVIG...all friends on my FB page. I see all of the time on a regular basis what they go through, I know what I went through and it took Rebecca one year to get on the right product of IVIG. She said the first year was hell on it. She was in the hospital from it. Plus, I believe she had a port for it, which many have to have...this is no walk in the park.

When people on here throw out,,,,"hey, you can try IGG therapy"...it is an option with Rituxan, but unless you have been on it, have several friends...I don't mean a handful, but several that you check in on and see taking it...I don't think it's something so easy to throw out there for CFS/ME folks.

I say this because like Adreno said, "Many can't even tolerate Vitamin C."

IGG is plasma from other people. Many react to other peoples plasma, no matter how much it's been cleaned/filtered and floaters are pleasant in plasma. The whole thing is not perfect. There are batches of Igg that are off, or that even have a bacteria in it. Whole batches have made so many IGG users sick.

This stuff is no small deal. It's a commitment. No matter how many liquids I drank, how much saline they gave me before and after the treatment and how slow they ran it for me, I was sicker than a dog. And it stays in your body for 21 days when you have IVIG. So, for 21 days I was sick.

I only know 5 people that after treatment are fine. Most become tired, have migraines, vomit...many are on Zofran, Benadryl and prednisone to counter the crazy effects. Many have it on a Friday after a week of working, only to spend the weekend in bed recovering from it...fabulous....

SubQ is better but many stay sick on that for 5 days, feel better and have to repeat the process. And...many don't. But we are not CVID folks..not all of us. Many with CVID can work full time. I know no one with CVID that is sick like us. Many are on SSD, but no one is bedbound. Unless they have Lyme or CFS. Most CVID folks can handle it better and they can't even handle it that well, that's my point.

Ps-aseptic menegitis from IGG can occur from SubQ, too. It's not as rare as you think....Join the Common Variable Immune Deficiency board on FB...hear peoples accounts.

It's not documentation that interests me, it's seeing "real" peoples accounts on a daily basis. What the internet says, what the NIH says...means zip. I am interested in hearing real peoples accounts.

I know Ema dose well on it and Daffodil and now Rebecca...but she had Aseptic...menengitis...for sure.

Try it..go for it. I want to hear everyone's responses on here, especially with this disease. I think everyone should try whatever they need to, but I wish I hadn't been sold a box of roses when trying IVIG..my doc promised it would cure me...and I found out real quick that all of us who were starting on it were having major problems.

 

[Marky90]

Hey, @Marky90 -have you tried IVIG? You know Rebecca had aseptic menengitis from it, right? It is not rare. I know you are quoting a website/internet...which really means nothing to me. I am not trying to offend you. Why do I feel that way? Because I have Primary Immune Deficiency, am on CVID boards and have attended conferences and I have friends who are on IVIG and are still so sick. She doesn't have CFS. She has to take it or the CVID will kill her, but it just caused a DVT in her chest....yes, IVIG did that. She is still on it.

Migraines, nausea and vomiting, diarrhea, and extreme fatigue are so common with IVIG along with rashes. Mild it says above......No...not at all.

I have about 50 friends on IVIG...all friends on my FB page. I see all of the time on a regular basis what they go through, I know what I went through and it took Rebecca one year to get on the right product of IVIG. She said the first year was hell on it. She was in the hospital from it. Plus, I believe she had a port for it, which many have to have...this is no walk in the park.

When people on here throw out,,,,"hey, you can try IGG therapy"...it is an option with Rituxan, but unless you have been on it, have several friends...I don't mean a handful, but several that you check in on and see taking it...I don't think it's something so easy to throw out there for CFS/ME folks.

I say this because like Adreno said, "Many can't even tolerate Vitamin C."

IGG is plasma from other people. Many react to other peoples plasma, no matter how much it's been cleaned and floaters are pleasant in plasma. The whole thing is not perfect. There are batches of Igg that are off, or that even have a bacteria in it. Whole batches have made so many IGG users sick.

This stuff is no small deal. It's a commitment. No matter how many liquids I drank, how much saline they gave me before and after the treatment and how slow they ran it for me, I was sicker than a dog. And it stays in your body for 21 days when you have IVIG. So, for 21 days I was sick.

I only know 5 people that after treatment are fine. Most become tired, have migraines, vomit...many are on Zofran, Benadryl and prednisone to counter the crazy effects. Many have it on a Friday after a week of working, only to spend the weekend in bed recovering from it...fabulous....

SubQ is better but many stay sick on that for 5 days, feel better and have to repeat the process. And...many don't. But we are not CVID folks..not all of us. Many with CVID can work full time. I know no one with CVID that is sick like us. Many are on SSD, but no one is bedbound. Unless they have Lyme or CFS. Most CVID folks can handle it better and they can't even handle it that well, that's my point.

Ps-aseptic menegitis from IGG can occur from SubQ, too. It's not as rare as you think....Join the Common Variable Immune Deficiency board on FB...hear peoples accounts.

It's not documentation that interests me, it's seeing "real" peoples accounts on a daily basis. What the internet says, what the NIH says...means zip. I am interested in hearing real peoples accounts.

I know Ema dose well on it and Daffodil and now Rebecca...but she had Aseptic...menengitis...for sure.

Try it..go for it. I want to hear everyone's responses on here, especially with this disease. I think everyone should try whatever they need to, but I wish I hadn't been sold a box of roses when trying IVIG..my doc promised it would cure me...and I found out real quick that all of use who were starting on it were having major problems.

Well im choosing to rely on the literature with regards to actual probability of side effects

I dont really care if ill feel awful on it, i feel awful now, and im going to find out if IVIG will make me better, or not.

 

[Misfit Toy]

@Marky90 -do it...please let us know how it goes.

 

[Marky90]

@Marky90 -do it...please let us know how it goes.

I will most definitely

 

[Misfit Toy]

I will most definitely

Mark, I think HYVQIA is a better way to go..if you can do that. Many are doing better on that. But, they may want to start you on IVIG first.

 

[Marky90]

Mark, I think HYVQIA is a better way to go..if you can do that. Many are doing better on that. But, they may want to start you on IVIG first.

Could you explain what Recombinant Human Hyaluronidase is? I couldnt find any info by google..

 

[Misfit Toy]

Could you explain what Recombinant Human Hyaluronidase is? I couldnt find any info by google..

Here is what I found for you....http://www.rxlist.com/hylenex-drug.htm.

What I know is, my friends are having less side effects from it. It has no preservatives. Preservatives are a huge issue because that a lot of times is what gives side effects.

 

[halcyon]

New paper from Lipkin et al.

Fatal Coxsackie meningoencephalitis in a patient with B-cell lymphopenia and hypogammaglobulinemia following rituximab therapy.
Palacios T1, Bartelt L2, Scheld W2, Lopes MB3, Kelting SM3, Holland S4, Lipkin WI5, Quan PL5, Borish L6, Lawrence M7.

Enteroviruses (EVs) are the most common circulating viruses and cause of viral meningoencephalitis in the United States. In the general population, enteroviral infection is usually a self-limited disease. However, in patients with humoral immunodeficiency, infections can be fatal. The present case is that of a woman with Evans syndrome treated with splenectomy and rituximab who developed hypogammaglobulinemia and, despite antibody replacement, a fatal Coxsackie B3 virus meningoencephalitis.

 

[out2lunch]

You can take ritux with immunoglobulins.

As others have pointed out, there is no therapy for IgM deficiency. And given my health history since birth, I was more than likely born with the condition. For that reason, anything that could potentially trash my front line immunity is not of any interest to me.

My total IgG numbers are normal. Like most CFS folk, my IgG1 bounces up and down around the low normal border, but its companion, IgG3, is fine, along with IgG2 and IgG4. And for that reason, Medicare steadfastly refuses to give me IVIG therapy just to improve IgG1. And it's too expensive to pay out-of-pocket for it. Plus, my doc thinks it wouldn't help much since the IgG1 deficiency is so mild.

 

[out2lunch]

New paper from Lipkin et al.

Fatal Coxsackie meningoencephalitis in a patient with B-cell lymphopenia and hypogammaglobulinemia following rituximab therapy.
Palacios T1, Bartelt L2, Scheld W2, Lopes MB3, Kelting SM3, Holland S4, Lipkin WI5, Quan PL5, Borish L6, Lawrence M7.

YIKES!!

Speaking of enteroviruses… does anyone know what Dr. Chia's position is on Rituxan for CFS patients?

I have no idea. But given this paper, I'm guessing he wouldn't recommend it.