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Has anyone visiting OMI (Kogelnik, Kaufman) and taking Rituximab had any significant recovery??

Gingergrrl

Senior Member
Messages
16,171
I didn't say they were bilking patients out of their money. Thank god for places like the OMI where people can access off-label treatments instead of being told to go home to their beds and die like we're told in Europe. I was just pointing out that they are charging $40k for a treatment whose efficacy has not been adequately established in ME/CFS and they have not published their outcomes despite having treated an unknown number of patients with RTX. Even a small case series would be useful so people can have some peer-reviewed information before parting with 40 grand.

I am not certain it is $40K but do not know. Many people pay more than this for a year of Valcyte (not me but speaking in general.) I believe they will ultimately publish all research and data that they have but are seeing an enormous amount of patients from all over the world with a very limited staff. They are trying to get enough funding to start the Severely Ill Big Data Patient Study which is the best shot we've ever had at solving this illness IMO. Some day they may publish all the info on who responded to Rituxan or Valcyte, etc, but they have a tiny budget and staff and really doing the best they can.

ETA: I am sure they would love to bring in a third doctor if there was someone interested in learning about ME/CFS and taking on this challenge.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
This is one patient that was treated at OMI with RTX (in Norwegian, but I guess you can translate it somehow) : http://www.aftenposten.no/100Sport/...-Jeg-har-vart-veldig_-veldig-syk-491763_1.snd

With some copying/pasting I've Google translated the page here (wouldn't translate via direct URL because page had a lot of other stuff on it):
Chess talent Marianne (22) has had ME for five years: - I have been very, very sickNow she is finally on the way back. - This year's best news! believes Hans Olav Lahlum.

Great talent Marianne Wold Haug (22) was so ill that she could not play chess for five years. Now she is finally beginning to recover completely.She was considered one the greatest chess talent on the women's side in Norway, was on the national team and would play his first Olympics at the age of 17 years.

Marianne could be Norway's best female chess player today, believes historian, author and chess profile Hans Olav Lahlum.But the life of Marianne Wold Haug was instead turned completely upside down.- It happened quite suddenly, she tells Aftenposten.It all started when she got a severe infection in December 2009, and for very many antibiotics was immune system completely incapacitated.

She was diagnosed with ME (Chronic Fatigue Syndrome) and was forced to stop at the Norwegian College of Elite Sport (NTG) in Bærum, where she had gone the high school two steps under sjakkongen Magnus Carlsen. Marianne was so low that she had not the energy to play chess.Taught by Carlsen on TV- Every time I was about to get me again, I just got new infections and became ill again. I've been very, very sick, says 22-year-old.She played a little chess those times best friends Ellen and Ingrid Carlsen (sisters Magnus Carlsen) came to visit, but otherwise was almost no chess training. Except that she saw Magnus Carlsen chess parties on TV, something she says she learned a lot from.

But at the beginning of 2015 - after five hellish years - did she finally a medicine which she says has worked for her. The shape is gradually becoming better and better. She finally dares to say it: "I'm trying to be healthy!"- There have been some very tough years, but now I'm just so happy that it goes so well. It feels extra good to feel good when you've had it so tough, says Haug says that the chance of recurrence is very small.- The last month I have been almost completely healthy. I am so happy to be able to do, see and experience it all again. It is absolutely fantastic. There are many who ask me if I've been sick and so on, but I think not so much of it now. I'm just so happy to be healthy again, she says.Was touched by the welcome

At the beginning of February, she participated in her first chess tournament since she became ill five years ago. It was a chess comeback of high class. 22-year old finished 2nd after victory in five of six parties (albeit one on walk-over), and she lost only against the international champion - and NRK specialist - Atle Green.- It was fantastic to play again, she says.- But the very, very best is how kind everyone in the community is against me. It is quite touching really. It was not so important whether I won or not, although I still have a strong competitive instinct. There was just so much fun to be back and playing chess again. When you've been as sick as what I have been, putting you even more appreciative of absolutely everything, there is the advantage, she says.Hans Olav Lahlum known Haug long time. He was ecstatic to hear that 22-year-old is finally fit to play chess again. In May 2013 was Lahlum, together with the VG journalist Mats A. Andersen, record holder of the "world's longest interview". For there he received a fee of 10,000 dollars of VG. The money, he chose to give to the medical research MEandYou, conducting research on ME. I can say that Marianne's story is the main reason why I chose to do it, although I also know several people who have struggled with ME, tells Lahlum.

Lahlum: - This year's best news- When it comes to personal tragedies among people I'm close, she is one of them I've been most afraid of. She was so very talented and while such a positive young man when she suddenly fell ill. That she is now almost fully recovered, is the year's top news and the best friend I've got news for several years. It's almost indescribable, says Lahlum.The life of Marianne is finally beginning to normalize, and she has already set new targets: Now she'll get the team to the Olympic Games in Baku in 2016.- Yeah, I feel like it. I go up slightly in the rating, it is possible. So I plan to play a lot of tournaments to come, says Haug.NRK chess expert Atle Green, who was the only one who managed to outwit 22-year-old event at Anytown earlier in February, believes she can get by on the Olympic team.Will be a doctor and help others with ME- It is not so very far forward. Chess is a bit like riding a bike or swimming; forgetting is not. I would think that she has the same level in now, as before she became ill. She compensates lack of training that she is now more mature and know themselves and their limitations better. She also seemed incredibly interested and had a passion for chess. She seems to have the right attitude, says Green, adding:- She has the potential to be the best female player in Norway.But chess is matter primarily a hobby for Marianne Wold Haug. For she takes up subjects like candidate so she can achieve her dream of becoming a doctor so she can help others with ME.- I feel like I've been incredibly lucky, but I see how much mishandling some others get. I hope that everyone who has ME can get help so I've got, and I wanted to do research on medicine or engage in health policy. I would like to help, says Haug.

Facts:What is ME?ME / chronic fatigue syndrome characterized by unexplained fatigue, with a range of additional symptoms such as pain, loss of concentration and sensitivity to sensory input.It affects very differently, from mild (at least 50% reduced activity level) to very severe (bedridden and in need of care). Also duration varies greatly.

What is the cause of ME?There are several theories about the causes of ME. Different communities have disagreed about ME is primarily psychological or physical. Often triggered the disease by an infection, especially known is mononucleosis / glandular fever. Stressful life events can trigger ME.One theory is that CFS may be related to weaknesses in the immune system.

Who gets ME?Women are affected more often than men, unless the reason is clear. Currently it is unclear which genes predispose to ME, but this research is now. No one knows how many people have the disease in Norway. One estimate is between 10,000 and 20,000

How are ME?There is currently no treatment that can cure evidenced ME.Various forms of exercise therapy, cognitive therapy, antibiotics and the mental training Lightning Process is used to help ME patients. But the documentation of the methods are controversial.

Source: National expertise service for CFS / ME, Directorate of Health, Haukeland US
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
This is from memory, others can correct me, but I remember about 6 PR patients trying ritux. I think @IreneF (who just posted here) had the best response that I remember. Some of these patients are still active on PR, some are not, so we don't know how things went after their ritux treatment
I ask in this thread if @IreneF could give us some more details about the Rituximab treatment she got (number infusions, schedule, amounts, when remission started, how long it lasted, etc).
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Thank you for the response. Could you tell us exactly how much Rituximab you were infused and on what schedule? Also how long was your remission and when during the treatment did it start?
I don't remember. It was probably the schedule mentioned above. My response was several months in, it lasted maybe 4-6 weeks.
 

Gingergrrl

Senior Member
Messages
16,171
I don't remember. It was probably the schedule mentioned above. My response was several months in, it lasted maybe 4-6 weeks.

@IreneF if you are comfortable saying, what were the specific symptoms that improved with Rituxan (even though it did not last.)
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Valcyte and Colcrys (colchicine). I'm also taking Plaquinil. Getting the dosage would mean getting up off the couch.
This is what I've been on for about a year:
colchicine 0.6 mg 2x/day
plaquenil 200 mg " "
valcyte 450 mg " "

I saw Dr. Montoya today. He was delighted that I am improving. (I've been seeing him for 7 or 8 years, quite a long time.) He warned me about pushing myself. He thinks there's a possibility that too much PEM might cause permanent damage.
 

Gingergrrl

Senior Member
Messages
16,171
It was a global improvement.

@IreneF Sorry to be so redundant about this but I don't know anything about what symptoms were most bothersome for you pre Rituxan. Did you have any improvement in dysautonomia (POTS, blood pressure, shortness of breath) or in Mast cell/histamine issues, or nausea/GI issues, etc. Was curious what plagued you the most that you got the temporary remission from? No worries if you don't want to discuss it further but thought I'd ask just in case!
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
@IreneF Sorry to be so redundant about this but I don't know anything about what symptoms were most bothersome for you pre Rituxan. Did you have any improvement in dysautonomia (POTS, blood pressure, shortness of breath) or in Mast cell/histamine issues, or nausea/GI issues, etc. Was curious what plagued you the most that you got the temporary remission from? No worries if you don't want to discuss it further but thought I'd ask just in case!
I had and still have POTS-type symptoms, but they are only a problem in very hot weather or if I exercise (hah!) or take a hot shower or bath. I don't remember if that improved. I know it's there now because I took a hot shower on Saturday, and while I didn't feel as bad afterwards as I used to, I spent Sunday on the couchwith PEM.

Core symptoms are PEM, easy fatigueability, brain fog, shakiness/tremulousness, chronic sinus headache, muscle aches. I used to have some GI problems but they have receded in importance. (One of the nurses at OMI recommended taking two different histamine blockers, and I think that has helped. I take loratidine/Claritin and ranitidine/Zantac.)

In general, I was more often on my feet instead of on the couch.
 
Messages
21
This is what I've been on for about a year:
colchicine 0.6 mg 2x/day
plaquenil 200 mg " "
valcyte 450 mg " "

I saw Dr. Montoya today. He was delighted that I am improving. (I've been seeing him for 7 or 8 years, quite a long time.) He warned me about pushing myself. He thinks there's a possibility that too much PEM might cause permanent damage.
Hi so glad u are improving. Can I ask how long it took to feel better after starting the colchicine ? O were u on the other ones already ? My 20 year old daughter started colchicine ten days ago and also started low dose valtrex. I am so anxious to know when we might be able to see any improvement ??? Thank u for any advice.
 
Last edited by a moderator:

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Hi so glad u are improving. Can I ask how long it took to feel better after starting the colchicine ? O were u on the other ones already ? My 20 year old daughter started colchicine ten days ago and also started low dose valtrex. I am so anxious to know when we might be able to see any improvement ??? Thank u for any advice.
Well, I'm not improving anymore. I've been in a crash for several weeks, pretty much since my visit to Montoya. It may have been triggered by a trip to a bookstore, of all things. So I don't feel qualified to give any advice.
 
Messages
21
I am so sorry to hear that. I hope u will be back improving soon. Can u up your dose of Valcyte ? Or do U get die off. ??
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I am so sorry to hear that. I hope u will be back improving soon. Can u up your dose of Valcyte ? Or do U get die off. ??
That's not something I'd want to do. Anti-virals don't kill anything, they just stop viruses from reproducing, so there's no die-off involved. The best thing to do seems to be nothing at all. Makes my cat happy, at least.
 

Kati

Patient in training
Messages
5,497
That's not something I'd want to do. Anti-virals don't kill anything, they just stop viruses from reproducing, so there's no die-off involved. The best thing to do seems to be nothing at all. Makes my cat happy, at least.
Hi Irene, I liked your post because of the first part explaining there is no herx or die off involved. i really wish people stopped using the word herx or die-off for anything and everything.

My best wishes for your health with the hope there can be better treatments soon.
 

Mij

Messages
2,353
An immune response is the better term when taking antivirals. I think success may also depend on the duration of the illness?
 

funkyqueen

Senior Member
Messages
123
Location
South of France
Wanted to put out this question because I cannot find anyone who's gone to OMI, received Rituximab and come out with any significant recovery or long lasting improvement, only threads showing the treatment failed after spending so much money. Definitely not appearing to be 67% that Fluge/Mella are reporting. Maybe just my queries on google and PR aren't finding anything.

Is it worth spending $40k? A drug having a 67% significant response rate is about as good as you are going to get in medicine, most drugs only work in approx 30% of people.

@leokitten :
http://forums.phoenixrising.me/index.php?threads/my-rituximab-experience-for-me.38239/#post-609612




@nandixon I am a patient at OMI and my NK functioning very low (originally 5 and now 6) and vasopressin was so low it was undetectable on two tests.

Are these two things the markers that tell if someone might be a candidate for Rituxan? My dr has not recommended it for me but I am just curious.

@Gingergrrl : My NK function was very low ( 6) too, and , like you too, my ADH ( vasopressin) level was so low, it was undectable too