Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

[melihtas]

I am not sure when those stats are from. They did recently extend follow up for 6 months because many patients improvement much later than they expected. I guess we have to wait until IACFSME and wait. Hopefully we'll see some results there. I would not try out cyclo before you know more. They will also probably do a new pilot study on cyclo with a lower dosage because of side effects. A number of patients suffered from an increase in ME symptoms in the study after cyclo infusions.

In the patent application paper they stated that most of the patients already received all six infusions at the time of writing but off course figures may change. I wanted to try cyclo because I was under the impression that cyclo is more effective than rituximab and it is the only affordable option for me. I was waiting for IACFSME to see some statistics since the publication of the trial has been postponed.

 

[Gingergrrl]

I wanted to try cyclo because I was under the impression that cyclo is more effective than rituximab

I was curious, when you said that cyclo is more effective than RTX, do you mean for traditional ME/CFS symptoms or for reducing auto-antibodies (in someone with known antibodies)?

 

[Sidereal]

I was curious, when you said that cyclo is more effective than RTX, do you mean for traditional ME/CFS symptoms or for reducing auto-antibodies (in someone with known antibodies)?

These drugs are being trialled in traditionally defined ME/CFS (diagnosis by symptom checklists, no lab tests).

However as far as I know CTX is also used in severe autoimmune diseases like lupus which must mean it depletes the antibodies or does something else to reduce the immune attack on self.

 

[melihtas]

I was curious, when you said that cyclo is more effective than RTX, do you mean for traditional ME/CFS symptoms or for reducing auto-antibodies (in someone with known antibodies)?

When they published the results of the cyclo pilot study with 3 patients they said some patients didn't respond to rituximab responded to cyclo and average response time is shorter than rituximab. That is why I got the impression that cyclo was more effective for treating ME/CFS symptoms.

 

[Gingergrrl]

CTX

Is CTX another name for Cyclo? I assume that it what you meant and if they are using it in Lupus patients, is Cyclo/CTX reducing the lupus antibodies or is this info not yet known?

When they published the results of the cyclo pilot study with 3 patients

Do you mean that the entire cyclo study only had three patients in it or just three responders of a bigger group? I apologize that I have not been able to read this entire thread yet.

 

[melihtas]

Do you mean that the entire cyclo study only had three patients in it or just three responders of a bigger group? I apologize that I have not been able to read this entire thread yet.

Before the current study with 40 patients they did a small pilot study with 3 patients.

 

[Sidereal]

Is CTX another name for Cyclo? I assume that it what you meant and if they are using it in Lupus patients, is Cyclo/CTX reducing the lupus antibodies or is this info not yet known?

Yes I just meant that I don't know what it does specifically in lupus, I'm not saying that the info isn't known.

 

[deleder2k]

In the patent application paper they stated that most of the patients already received all six infusions at the time of writing but off course figures may change. I wanted to try cyclo because I was under the impression that cyclo is more effective than rituximab and it is the only affordable option for me. I was waiting for IACFSME to see some statistics since the publication of the trial has been postponed.

Yup, that is correct, but my understanding is that quite a few patients responded a while after their last infusion, but I can't confirm this 100% as of now.

 

[BurnA]

Only half of the patients improved and only up to a function level 35%.

From reading the document it describes only two patients in detail from the latest study and also the 3 pilot patients.

So the 35% may not be fully representative.

But there is definitely a large unknown associated with CTX.

While it may hopefully present a treatment option, for me I am hoping it can lead to more understanding of the disease.
If they can figure out the difference between the patients who don't respond to RTX and those who respond to CTX and also the non responders i imagine it will lead to a greater understanding of the disease and of RTX treatment too.

The only problem might be that CTX is so destructive it might be difficult to decipher exactly how it works in ME.

But it's another avenue to investigate and seeing as we dont have many, its very significant.

 

[Jesse2233]

This is a noteworthy result from the pilot study

In a subsequent small pilot study, two out of three ME/CFS patients treated with cyclophosphamide improved quite dramatically.

Before treatment, one of the pilot study participants was only able to walk an average of 326 steps per day. “After six infusions with Cyclophosphamide, she was able to take 13 000 daily paces,” Fluge explained to Teresa Grøtan.

 

[MEMum]

Prof Mella said at IiME that the study will end in July 2017, so hopefully we will hear before the end of the year. Some people are in remission. They will be continuing with Cyclophosphamide, in different doses/cycles and also probably other immune modulating drugs. He said that it would be surprising if the first or second drug trialled by them ends up being the best one for treating ME....

 

[Marky90]

Cyclo probably needs to be taken with something else for best effect, I would think. Seems to be the case for most diseases where cause is not pretty well illuminated.

 

[Gingergrrl]

Cyclo probably needs to be taken with something else for best effect, I would think. Seems to be the case for most diseases where cause is not pretty well illuminated.

Are there any studies where someone did Cyclo and IVIG together? Sorry if this is already posted and I missed it! I'll be doing Ritux and IVIG together and followed closely (but am not part of any official study).

 

[Marky90]

Are there any studies where someone did Cyclo and IVIG together? Sorry if this is already posted and I missed it! I'll be doing Ritux and IVIG together and followed closely (but am not part of any official study).

Nope.. That sounds pretty promising.

 

[Frenchguy]

Anyone have news ?

 

[deleder2k]

We only know that someone has gotten better. Some got worse. Worse than one would expect for individuals with cancer. They've started phase B of the study, but I think only 3 patients have been treated.

To my understanding part A will be published after the RTX study. I could be wrong, but that is my understanding.

We will have to wait and see

 

[Frenchguy]

Thks Deleder, if they have started partB, in my understanding, 40% of ppl in part A have a great response ?

 

[Wonkmonk]

ICYMI: Dr. Mella is cautiously optimistic about Cyclophosphamide results and suggests it might become a treatment option for CFS/ME (24:40):