Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

[ebethc]

I don't want to speak for @zzz There are some who will be doing it for the rest of their lives and others (like me) where it is temporary. If I stop at the end of Dec as planned, I will have done it for 1.5 yrs.

wow.... I believe it's $30k per month, so ~$600 out of pocket assuming a 20% copay, until you hit your out of pocket max, which can be high... I don't see how that's sustainable for a lifetime...

It is the most successful treatment that I have done but the true test will be if my improvements remain once I stop IVIG.

good for you! I'll look forward to hearing updates next year after you've stopped..

 

[IreneF]

Hi Gingergrrl, Thanks for the kind wishes. I have been reading your thread on Rituximab and I wish you the best also. Maybe we can get some good news going here.

What I was treated for is called a monoclonal gammopathy.

Most people with ME/CFS do seem to fall into the no colds or flu camp, but I have met (online) others who have my problem. I don't know what my problem with getting IVIG is but my IGG levels keep sinking lower and lower. I'm hoping that the Rituximab will put me under the bottom, as opposed to over the top, and I'll get IVIG or that my IGG will start to rise now.

I'd like to talk to you also. Feel free to contact me.

I was recently diagnosed with monoclonal gammopathy of unknown significance (MGUS). It doesn't seem to have any relationship to ME/CFS. It can be a precursor to multiple myeloma (MM), which is what killed my father, so my risk of MM is about twice as great. It's still fairly rare.

MGUS is usually not treated unless it transforms to MM. It can also lead to other conditions.

 

[IreneF]

IVIG is an injection of antibodies (immune globulins) collected from the blood of other people. It's expensive because it takes a lot of blood. If you have a primary immunodeficiency it won't cure you because all it does is replace the antibodies you can't make by yourself. It helps to protect you from infections that most people can fight off. The antibodies have a limited lifespan so the effect is not permanent.

 

[Gingergrrl]

I was recently diagnosed with monoclonal gammopathy of unknown significance (MGUS). It doesn't seem to have any relationship to ME/CFS. It can be a precursor to multiple myeloma (MM), which is what killed my father, so my risk of MM is about twice as great. It's still fairly rare.

I literally was just asking my doctor about this b/c on several blood tests I have slightly elevated IgM. This started a few years before I did IVIG and my doctors have always said that it was insignificant. But after talking to a few people from PR, I am wondering at what point the elevated IgM is diagnosed as "MGUS". My step-daughter's mother died of multiple myeloma (MM) and I know what a horrible disease it can be. No one in my family has had it but no one in her family had it either and she was an outlier. So I want to learn more about this for sure.

MGUS is usually not treated unless it transforms to MM. It can also lead to other conditions.

How do they determine when elevated IgM becomes MGUS or something worse?

If you have a primary immunodeficiency it won't cure you

This is correct (re: IVIG) and it is often even correct re: high-dose IVIG for auto-immunity and when you stop it, within a couple months, all benefit can be gone. Although there are some cases (per my doctors) where the benefits are permanent. But with Rituximab, if you are a responder, the benefits can last much longer than IVIG and in the best case scenario, if the B cells grow back without the pathogenic auto-antibodies, you could be in remission and no longer need future IVIG.

 

[zzz]

interesting... how many IVIG treatments do you need, and how often? Is it something that you have to do for the rest of your life?

I've read very little about IVIG, but I think I saw that it has something like a 50/50 success rate... is that true? I don't know that much about it..

Sorry for the delay in responding - I've had a family emergency I've needed tending to, and which is going to keep me busy for the next week or so.

In any case, I think that @Gingergrrl did a rather thorough job of answering this question; she has a lot more experience dealing with these issues that I do. There's just one thing I'd like to add, and that relates to insurance:

wow.... I believe it's $30k per month, so ~$600 out of pocket assuming a 20% copay, until you hit your out of pocket max, which can be high... I don't see how that's sustainable for a lifetime...

The actual cost depends on many factors; among other things, the autoimmune dose is several times as large as the immunodeficiency dose, and is priced accordingly. Then there are all the facility charges, doctor charges, etc., depending on the type of treatment you're getting.

In any case, 20% of the total cost is definitely unsustainable for the vast majority of people over the long term. Whether that 20% applies to you or not depends on your insurance coverage. In the U.S., if you have Medicare, IVIG is covered under Medicare Part B, which means that there is typically a 20% copay. But if you have a Medicare Part B Medigap policy (very highly recommended!), then the Medigap policy will pick up the copay, and you will owe nothing for the treatments.

 

[ebethc]

Sorry for the delay in responding - I've had a family emergency I've needed tending to, and which is going to keep me busy for the next week or so.

sorry to hear that.. hope it works out.

re IVIG, how long are you doing it? are you on a lower dose?

thanks for the insurance tip!

 

[Gingergrrl]

@ebethc @zzz wanted me to let you know he probably won't be able to reply to your latest question for a week or two due to a family emergency but that he has not yet done IVIG. He is hoping to do IVIG in the future for immune deficiency but does not yet know if it will be approved or at what dose. Hoping this helps (and please correct me later @zzz if I got anything wrong)!

 

[tomcy6]

Hi IreneF,

I have MGUS or that was my initial diagnosis. It was recently changed to a type of lymphoma, but my hematologist says that it's the same thing. I believe that this has evolved out of my ME/CFS. I believe that I am like the PWCs that Fluge and Mella came across while treating people for lymphoma. My IGM is almost 5x the high end of normal. My IGG keeps sinking lower as my IGM goes higher but so far it is not low enough that my hematologist will order IVIG for me.

It's been a couple of weeks since my last Rituximab IV and my digestive tract has been acting up for a couple of days. I don't know if that's due to the Rituximab. The hematologist says that it will be a while before we can determine the effects of the Rituximab IVs. My energy level is improving but is still below my pre-Rituximab level.

 

[Gingergrrl]

I have MGUS or that was my initial diagnosis. It was recently changed to a type of lymphoma, but my hematologist says that it's the same thing.

@tomcy6 First, I want to apologize that I have been so slow to reply to a msg you sent me and the info was incredibly helpful (and I plan to reply soon)! I am so sorry to hear that your diagnosis was changed from MGUS to lymphoma and am hoping your doctors are on top of this and whatever needs to be done.

My IGM is almost 5x the high end of normal.

I searched through my old records and my IgM was always just slightly above range (never 5x) and in the most recent test that I could find (from mid 2016) it was actually inside of the range at 266 (top of range was 271) so it had gone down. But this is something that I plan to monitor in case it goes higher again.

My IGG keeps sinking lower as my IGM goes higher but so far it is not low enough that my hematologist will order IVIG for me.

I don't understand why they are not letting you try IVIG with your IgG sinking lower and IgM going higher? This is maddening to me (unless there is something I am not understanding).

It's been a couple of weeks since my last Rituximab IV and my digestive tract has been acting up for a couple of days. I don't know if that's due to the Rituximab. The hematologist says that it will be a while before we can determine the effects of the Rituximab IVs. My energy level is improving but is still below my pre-Rituximab level.

I had my second RTX infusion three days ago and I had nausea after both infusions but for me the nausea was much worse after the first infusion vs. the second (and is now gone). It did not affect my energy level but in general, my energy is normal vs. my muscle strength is weak (plus some other problems). Will you be doing the maintenance doses of RTX in three months, six months, etc, or too early to know?