Gamma globulin

[Daffodil]

with regular infusions, you would have no B cells!

 

[deleder2k]

It depends on how often you get Rituximab. Remember that they constantly check your IGG levels. Hypoglobulinemia is a rare side effect from Rituximab treatment. As you will be checked upon regulary, medical staff will spot this from your blood tests. I have little or no knowledge about how b cells production work, but I would let the doctors take care of that. I would advise you to do the same.
I would recommend you to read all the posts from professor emiritus @Jonathan Edwards on this topic.

 

[Daffodil]

what would happen if you get some kind of infection like TB during the rituximab? you would be dead

 

[heapsreal]

Is there any info on the mechanisms behind how it helps cfs/me?

 

[Daffodil]

it gets rid of B cells. some of them are autoreactive..ie attacking the body

are the people who are giving rituximab giving antivirals right after it?

heap..since you are doing better on antivirals, you might do very well on rituximab if followed by antivirals to prevent reinfection of more B cells with EBV

but I don't know....my brain is mush

 

[heapsreal]

it gets rid of B cells. some of them are autoreactive..ie attacking the body

are the people who are giving rituximab giving antivirals right after it?

heap..since you are doing better on antivirals, you might do very well on rituximab if followed by antivirals to prevent reinfection of more B cells with EBV

but I don't know....my brain is mush

My main issue is cmv and im functioning quite well on antivirals, now im just on famvir(after 18months of valcyte to knock cmv back). But if i stop avs, viral symptoms return ie fatigue, brain fog, neck glands become sore etc. My NK functions tested very low so that might explain why i cant keep viruses down once off antivirals.

I remember reading that B cells could be a reservoir for ebv, which i have had in the past, but unsure about cmv and B cells?

Also i think Dr K was looking into rituximab and valcyte to reduce relapses. But this was awhile ago and havent heard anymore on this. Im guessing he was basing his theory more on cfsme being an infectious agent stored in the B cells rather then a purely auto immune condition.

I have no chance of getting rituximab here for cfs/me unless it becomes a mainstream treatment.

 

[deleder2k]

it gets rid of B cells. some of them are autoreactive..ie attacking the body

are the people who are giving rituximab giving antivirals right after it?

heap..since you are doing better on antivirals, you might do very well on rituximab if followed by antivirals to prevent reinfection of more B cells with EBV

but I don't know....my brain is mush

I think only if they develop infections. But that is rare. Most of them just back to a healthy life.

 

[Daffodil]

didn't the study show that the remission lasts only a couple of months, usually?

I hear kogelnik is prescribing it...wish he would publish something. wonder if he is combining with antivirals

 

[deleder2k]

Rituximab is something you do not just prescribe. I have heard that he treated some patients with it though.
Rituximab is mainly infused in hospitals. Patients will be closely monitored during the infusion which takes hours.

The study i posted results form was the latest open study.
The first study: http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358

Only two doses of Rituximab were infused in the first study.

Rituximab 500 mg/m2 (maximum 1000 mg), diluted in saline to a concentration of 2 mg/ml, or an equal volume of saline, were given twice two weeks apart, with nurse surveillance and according to local guidelines used for treating B-cell lymphomas. No additional Rituximab infusions, or other intervention, were given during follow-up.

 

[Daffodil]

thanks deleder.

gave myself 6th infusion of gamunex last night. just getting worse with each one lol

 

[heapsreal]

thanks deleder.

gave myself 6th infusion of gamunex last night. just getting worse with each one lol

Theres not much you havent tried is there?
Are you other immune tests low also neutrophils, white cell count, nk function etc too, gamunex improved any of these numbers?
Wouldnt it be good if the price of ampligen came down and give it a shot?
You must be at a loss of what else to try, hope things start turning around for you soon.

 

[Daffodil]

thanks heap. I haven't checked anything since starting gamunex. cant get those tests here anyway.
xo

 

[deleder2k]

Is Ampligen for sale, @heapsreal ?

 

[heapsreal]

Is Ampligen for sale, @heapsreal ?

i think it can still be obtained by some doctors for research purposes, basically have to pay out of pocket which adds up to thousands. Makes rituximab look cheap.

I often wonder if cfs/me are intentionally being held back as treatments like rituximab and ampligen are expensive and would blow a big whole in many countries health care budgets??

 

[deleder2k]

No. At least not Rituximab. It is cost effective. Think of all the people that can get off disability schemes.

 

[heapsreal]

No. At least not Rituximab. It is cost effective. Think of all the people that can get off disability schemes.

I agree for people getting of disability but i dont think alot of politicians can see that far ahead unfortunately.

 

[justy]

This is a great thread - thanks everyone. My doctor has advised gamma globulin, either IV or IM. But it seems I will not get this treatment in the UK anywhere. I am waiting for his clinic to tell me how often, how much, costs, duration of treatment etc. He wants me to have IV abx, but not until AFTER a few months of GG.

My immune system is really screwed up and I have both one part that is overactive - HIGH NK CELL function and low titres of ANA and another part that is very low - TH1 immunity I think. I get infections frequently, and have done since I was a child, especially upper and lower respiratory. Just recovering now from a really nasty chest infection that has seriously affected my M.E symptoms - spent two weeks gasping for breath= it was hideous- I had to take high doses of prednisolone, which then supresses the immune system further, and I don't get the positive effects from them of more energy etc, just make me feel absolutely appaling.

My doc has dx me with Cpn, Bartonella and Lyme. He says I need to boost the immune system first before IV abx, although I am starting on Rifampycin for Bart, 300mg a day next week.

The ritux discussion is a bit off topic, but even though ti sounds miraculous and I would love a full remission, I now have scarring in one of my lungs due to repeated infections and pneumonias so I don't think I would be a good candidate at all. Due to the scarring in my lungs I have many years to look forward to of continued infections and nasty drugs to keep me breathing.

All the best
Justy.

 

[deleder2k]

I agree for people getting of disability but i dont think alot of politicians can see that far ahead unfortunately.

If say, 70%, of patients treated with Rituximab can get back to work, politicians will get it. With a estimated 1 million M.E sufferers in the U.S, this could be what the U.S need to finally get out of their deficit lol. Remember that Rituximab is used to treat rheumatoid arthritis and other autoimmune diseases.
The patent is expired in Europe, and expires in the U.S in a few years. Prices will plummet.

 

[heapsreal]

If say, 70%, of patients treated with Rituximab can get back to work, politicians will get it. With a estimated 1 million M.E sufferers in the U.S, this could be what the U.S need to finally get out of their deficit lol. Remember that Rituximab is used to treat rheumatoid arthritis and other autoimmune diseases.
The patent is expired in Europe, and expires in the U.S in a few years. Prices will plummet.

Maybe I pessimistic about the govt. Valcyte has got me functioning again and working . I was helped out with Valcyte by some friends, otherwise I wouldn't have been able to afford it.

I think this illness needs to be recognized for what it is and have several treatments that can help us be approved for use in us, antibiotics, antivirals, ampligen etc but they also need to understand how to diagnose chronic infections which many of us have but results aren't interpreted properly. Some of these treatments do help considerably for some of us.

Rituximab is on the cards, but even gamma globulin is hard for many to get and can be quite helpful? ?

so there are treatments that help and have been shown to be safe in general but they need to be approved for cfsme before many doctors are comfortable using them.

Diagnosis is an issue, but they have diagnostic biomarkers they could use with the CCC to help confirm the diagnosis, but again it all seems to hard for authorities? ?

Don't want to sound negative but we need big $20m research studies going on which just isn't happening? ?

 

[deleder2k]

I think things are changing. Big studies will come. I think when the third phase study from Norway is ready in about 3 years, a lot of stuff will happen. At that time no one can say that the study was too small, wasnt placebo-controlled or blinded.

There have been studies with gamma globulin, and they have shown no or some effect. The problem though, is the criterias for the diagnosis. A lot of the studies where done with the oxford criteria or a simple requirement that the patients has experienced fatigue for more than 3/6 months. That is ridiculous. That is why all new studies MUST fulfill the Canadian criterias.