My ritux experience so far

[Hubris]

@Learner1

I can't read all of it but it seems like cortisone would be less dangerous/toxic yet less effective(generally speaking), did i get it right?

 

[Learner1]

@Learner1

I can't read all of it but it seems like cortisone would be less dangerous/toxic yet less effective(generally speaking), did i get it right?

Yes, but if you have infections or a suppressed immune system already, you might not be able to fight off infections which could be fatal with the hydrocortisone.

Also, rather than high dose hydrocortisone, there are stronger steroids like prednisone, dexamethasone, or Solumedrol. But the risks/side effects are stronger, too.

 

[Hubris]

Yes, but if you have infections or a suppressed immune system already, you might not be able to fight off infections which could be fatal with the hydrocortisone.

Also, rather than high dose hydrocortisone, there are stronger steroids like prednisone, dexamethasone, or Solumedrol. But the risks/side effects are stronger, too.

That could also happen with cyclophosphamide though right?

That is why i'm trying to have a complete infection panel done with PCR before starting cortisone but it's not easy. I have to ask around many doctors and hope one of them says yes, or keep nagging my GP until she says yes (or change to a new one).

Here in italy we use the word cortisone to refer to the family and not a single drug; so systemic high dose cortisone probably means that i'll be using one of the drugs you listed and not hydrocortisone.

 

[Learner1]

Those are questions for an infectious disease doctor or immunologist.

From what I understand of your situation you likely have active infections as well as suppressed immune function, so suppressing your immune system could be dangerous.

 

[Hubris]

Those are questions for an infectious disease doctor or immunologist.

From what I understand of your situation you likely have active infections as well as suppressed immune function, so suppressing your immune system could be dangerous.

Yes i'm seeing an infectious disease dr in a few weeks, though the problem is that since they don't know me/cfs they can't fathom these kind of symptoms being from an infection, and since to them there is no proof of your immune system being dysfunctional (because, again, they don't know about me/cfs) they have no reason (in their head) to assume your immune system is dysfunctional and therefore low IgM = no infection, must be autoimmune(hypogammaglobulinemia isn't enough). They categorically exclude infections and they get annoyed if you try to suggest otherwise.

You know these things better than i do, you struggled with doctors as well before going to Dr. Kaufman (sadly there is no equivalent for him here in Italy). Despite this i'm still gonna try, i won't supress my immune system before being "sure" that i don't have infections.

 

[Gingergrrl]

@Gingergrrl I think it should be clear and obvious to anyone who is following you on this board that you are trying to help other members wherever possible and that you are not seeking to disparage any other individual or group of patients. To be honest, I think that is an absurd accusation that I can only imagine must have been some kind of misunderstanding on @Joh's part.

Thank you @Wonkmonk and I am glad that you can see my true intention with sharing so much info is to help others down the line. I am hoping once I am long gone that others will read about my experiences on PR and why I made certain decisions and it will help them. There is no scenario in which I would disparage another group of patients, with any illness. It is just not me.

I know there are haters out there but I rarely encounter them on PR and this was the third time (in four years) that someone has attacked me out of the blue where I did not see it coming. It can really affect me, and it increased my tachycardia even when I woke up, but I am trying to move past it.

I just wanted to add that the group I reference (who have my same calcium autoantibody) are a very loving group of people and to see the word "smug" applied to them blew my mind. At one point I had posted a little survey in that group when I was trying to learn more about Ritux and there were people in other countries posting replies to me in other languages and other people were translating and it was a beautiful experience (similar to what I normally encounter here on PR).

Some of them have flown from Europe and South America to go to Mayo Clinic thinking they would be helped but were treated like shit and told the autoantibody was meaningless (unless it correlated with LEMS or cancer and for many of us, it does not). It is a small group b/c the autoantibody is rare and I have seen doctors who have never even heard of it (and they went to med school)!

@Gingergrrl, please do not stop posting on this subject. You have been generous with your time and have gone to great effort to provide detailed information about your situation, which is quite helpful in putting the treatments you have chosen in context. Not every treatment will be right for all of us, so it is incredibly important to understand why people are doing what they're doing, the context, and what the results are.

Thank you @Learner1 and this is why I have been so open re: the confusion surrounding my diagnosis so people will understand WHY I have made the decisions that I have made and know the full context. There are times that I have prayed to have a clear-cut diagnosis without any confusion but I do not know if this will ever happen. Thank you for understanding that.

Yes i'm seeing an infectious disease dr in a few weeks, though the problem is that since they don't know me/cfs they can't fathom these kind of symptoms being from an infection

I think that is a great idea @Hubris and I was wondering, is it possible to just say that you want to be tested for viral PCR's without telling the doctor you were given an ME/CFS diagnosis? The PCR results should (hopefully!) be accurate and give you the info that you need to move forward. I often just report my symptoms to doctors who are unable to comprehend the complexities of my case.

 

[Hubris]

@Gingergrrl
Yes of course that's what i will do, mentioning me/cfs at all is a losing strategy in most cases, i'm just gonna say i'm diagnosed with a post infectious syndrome and we want to make sure there are no infections before trying cortisone, seems like a good strategy

 

[JES]

I can't imagine that their higher desperation is the reason and find this quite insulting and unfair. You are the lucky ones with lab abnormalities that can be targeted by treatments. I envy everybody with autoimmunity and I would start treatments tomorrow because there's a range of possible treatment options (IVIG, Rituximab, plasmapharesis) and it's even possible to fight the insurance over it. Imagine you feel like dying for decades every day, but have no interesting lab abnormalities - nothing you can do, nothing you can fight your insurance over, no lead for doctors. Welcome to the world of ME/CFS. The reason is not, that these people are not as daring or proactive, as your group smugly seems to think. I find this really insulting and you apparently have no idea how it feels to not have your level of misery reflected in lab tests and no one to believe you because of the lab tests and to regularly ask yourself if you're crazy because nothing shows up and to not have Cell Trend and doctors interested in your case because it's so special. Ever wondered why the suicide rate is so high in ME?

You are simply wrong. 99% of the world population that has even confirmed some lab abnormalities won't ever get access to IVIG, Rituximab or plasmapheresis. The first hurdle is that it's financially not an option. Only in USA you get access to these treatments with insurance if you are very lucky, in Europe healthcare is mostly public and they won't pay for IVIG or Rituximab unless you have some rare fatal disease that absolutely requires the medication to stay alive. Even if they did pay for it, most doctors would not treat "off-label" conditions with Rituximab or even IVIG. There was one UK patient here on PR that had very clear evidence of abnormal antibodies and some CNS autoimmune process, but was refused treatment by the best doctors in UK and had to travel to China to get treatment.

 

[Gingergrrl]

There was one UK patient here on PR that had very clear evidence of abnormal antibodies and some CNS autoimmune process, but was refused treatment by the best doctors in UK and had to travel to China to get treatment.

That was Shawn and I followed his story very closely (although his symptoms were very different than my own). When I spoke about desperation to try treatments (which I never meant to upset anyone), Shawn was the kind of person I had in mind and is what I witnessed in the other groups I referred to (people selling their homes or flying to China to get treatments).

There was a woman in one of my groups who is a single mother of a young child with BOTH calcium autoantibodies (vs. I just have one) and she was debating, does she try Rituximab which can have major risks as we discussed above, or does she do nothing and pray that the two CA+ autoantibodies do not end up causing small cell lung cancer which is very fast growing, aggressive cancer that is usually fatal.

That was what I was trying to express re: most of the people in those groups were either doing or were debating hard core treatments (whether to do them, how to get them approved, how to fight the insurance, do they move to other countries like Shawn did if needed, etc). I never meant it as a judgement or criticism of anyone whatsoever and was more reporting my observations as a participant in several groups. I hope this makes more sense now. If not, I will for sure never mention it again. I just still feel badly about this, and a bit confused, and it bothered me all day.

 

[Thinktank]

@Jonathan Edwards ,

For which auto-immune diseases do you believe rituximab is absolutely suited?

My wife suffers from SLE, although i have found no conclusive studies that rituximab is effective for SLE she is still interested in the drug.

Do you believe rituximab is something that can be used for SLE?
Or do you know of any alternatives that might work better? We know of benlysta, but i find the data disappointing.

 

[wastwater]

Interferon is used in MS does it have any use for ME

 

[Desertstorm]

Had a six hour ritux infusion yesterday. Had a reaction (itchy throat and scalp) at the 200 Mg stage which was treated with Benadryl. An hour later we started up again with no problems. Next is in a fortnight. Fingers crossed it will do its thing on the B cells and steroids can be reduced or eliminated.

 

[Gingergrrl]

Had a six hour ritux infusion yesterday. Had a reaction (itchy throat and scalp) at the 200 Mg stage which was treated with Benadryl. An hour later we started up again with no problems. Next is in a fortnight. Fingers crossed it will do its thing on the B cells and steroids can be reduced or eliminated.

Thanks for updating us and I hope your second infusion in 2-weeks goes smoothly and you can get off the steroids.

 

[Desertstorm]

It kicked my ass to be honest. Hope it helps but then like most here I try about anything.

 

[Gingergrrl]

It kicked my ass to be honest. Hope it helps but then like most here I try about anything.

I am hoping it helps you, too, and thanks for updating us.

 

[Seadragon]

@Jonathan Edwards Thank you for sharing your thoughts, as I said, I am also sceptical, although as probably all CFS patients I tend to desperately look for the next straw to grab and after the hype we've seen, it is hard to let Rituximab go, and I can understand patients who - despite the advice not to try it - ultimately decide to grab that straw.

May I perhaps ask you about your opinion about Cyclophosphamide as a possible treatment option? Dr Mella appears to be much more optimistic about this drug. Again quoting the subtitles from the video above:

"The Cyclo-Study where we used Cyclophosphamide has preliminary very good data. Many patients are reporting improvement, but the problem is that it is less well tolerated than Rituximab. Particularly subjective, nausea is a significant problem and we are a little unclear about what to do next. When we look at the Rituximab data, we see that in order to be certain what effects we are really looking at, then we need to do a form of double blind study, at least a study that can say something about that are in operation in the study. So we are thinking about making a double blind study on Cyclophosphamide. It is difficult because the substance causes nausea. Even if we give a lot of anti-nausea medication, there are some patients who become nauseous and there is more nausea among ME patients than in cancer patients. This is a treatment we provide daily at the cancer ward. Cancer patients rarely get nauseous when they get the anti-nausea medication, whereas ME patients in fact do. So the tolerance is worse in ME patients than in cancer patients. So we are currently in the thinking stage when it comes to Cyclophosphamide. But we must remind ourselves that when we had the first patient observations, it was with chemotherapy that contained either ifosfamide or Cyclophosphamide. It might be that the nonspecific immunosuppression cyclophosphamide provides may become a therapeutic offer for patients in the future."

 

[Diwi9]

Interferon is used in MS does it have any use for ME

Dr. Chia has reported using for his son, but that he had a very difficult time with it and no longer uses it for patients. I believe he discussed this during his ME/CFS Alert video interview with Llewellyn King...not sure which one as there were multiple episodes with Dr. Chia.

 

[Wonkmonk]

Does Dr Chia's son have CFS/ME?

 

[Desertstorm]

I am hoping it helps you, too, and thanks for updating us.

I had my second infusion about a month ago and was really wiped out until a week ago when things took a swing for the better. Crossing my fingers, but I am functional now.

 

[Wonkmonk]

@Desertstorm Amazing...