Question re: how Rituxan compares to other immunosuppressants?

[BurnA]

Hello, Freddy.

I know that cyclo has made a patient go into remission, which was a non-responder to rituximab. Rapid response (within days). The other patient I know about got up to a functioning level of 80% (compared to a healthy individual)

I also know a case where RTX and cyclo have been tried without encouraging results.

Have there been trials / experiments with rtx and cyclo as a combination ?

 

[deleder2k]

Not to my knowledge.

 

[funkyqueen]

Hello, Freddy.

I know that cyclo has made a patient go into remission, which was a non-responder to rituximab. Rapid response (within days). The other patient I know about got up to a functioning level of 80% (compared to a healthy individual)

I also know a case where RTX and cyclo (First, RTX, then cyclo a few years after) have been tried without encouraging results.

So, @deleder2k , you know 3 diferents patients involved in CycloME, (Correct me if I'm wrong?)

- 1 who had not responded to Rtx, and has had a rapid response with Cyclo,
- One of which had previously Rtx in Phase II, which had not responded to Ritux, and then had Cyclo,and seems to not respond to Cyclo too? (But hey, the first doses were given in November 2015, so maybe it's soon to say ?
(even if you seems to think that apparently, answers would come faster under Cyclo?)
- And the last patient has recovered 80% of his state before ME (But which group the patient should be placed ? Among the 25 who have never had immunosuppressive therapy? Among the phase II responders? Or among the phase II non-responders ?
Do you know that ?

Can't wait until november 2016 !!

 

[deleder2k]

Sorry, I don't have any more information at this time.

The study is likely to be published in 2017.

 

[BurnA]

But hey, the first doses were given in November 2015, so maybe it's soon to say ?

I had assumed it had started before this, don't know why. Can I ask where did you read that the first doses were in Nov 2015 ?

Can't wait until november 2016 !!

I think it's more likely to be Nov 2017 for results. Last patients got treatment Jan 16. Treatment is for approx 6 months followed by 12 months observation. Allow a few months for analysis and write-up and it will be almost November I imagine.
But will know if part b has kicked off or not soon.

 

[funkyqueen]

Sorry, I don't have any more information at this time.

The study is likely to be published in 2017.

Ok, thanks @deleder2k

I had assumed it had started before this, don't know why. Can I ask where did you read that the first doses were in Nov 2015 ?

I think it's more likely to be Nov 2017 for results. Last patients got treatment Jan 16. Treatment is for approx 6 months followed by 12 months observation. Allow a few months for analysis and write-up and it will be almost November I imagine.
But will know if part b has kicked off or not soon.

Yes, @BurnA , you right, I'm sorry about that, it seems i made a mistake in my calculations ! ...reading that the estimated study completion date - part A- will be in Nov. 2016

 

[Justin30]

@Jonathan Edwards I have been reading a lot and it seems as though most people with ME seem to go through a period of high immune response/ overactive followed by a decline or an underactive immune response.

Lipkin/ Hornig/ Petterson says this takes up to 3 years for the immune system to become exhausted which I feel is a more generalized figure probably an average.

I have been sick a year and present with low:

VEGF
CD3a and CD4a

High:

IL 10
CD13
TNF
TGF-Beta 1

Positive
ENA but not ANA

From what i was told my immune system is exhausted. I am not looking for a DX or med advice.

Why if they are finding ME patients with underactive immune systems would you want to use Rutux or Cyclo? My understanding these are immune system suppresents?

Further I read for one hard to treat Autoimmune disease that is deadly (I think it had to do with the skin) they used the combo of Rutuximab with IVIG with good success. Could this be a possibility for ME?

Possibly Belubimab with Low dose IVIG. Low dose IVIG may have worked for some ME Drs.

I am just throwing out things from what I have read but would like to hear your thoughts?

 

[Gingergrrl]

@Justin30 I do not know the answers to any of your questions but since I started this thread, just wanted to post an update that the chances that I will be trying an immunosuppressant are very low (but not off the table at this point) and will most likely have IVIG or plasmapheresis. Because of my auto-antibodies and other issues, the immuno-suppressants make me a high cancer risk. I posted an update in the paraneoplastic syndromes thread. Am hoping this will all be figured out by the end of April. I wish it were sooner but right now it seems unlikely. I still follow all the Rituxan threads with great interest b/c they may apply to me some day after all.

 

[Justin30]

@Gingergrrl

I hope they find something that works for you ☺. Fingers crossed

 

[Gingergrrl]

@Gingergrrl

I hope they find something that works for you ☺. Fingers crossed

Thank you @Justin30 and me, too!

 

[Jonathan Edwards]

@Jonathan Edwards I have been reading a lot and it seems as though most people with ME seem to go through a period of high immune response/ overactive followed by a decline or an underactive immune response.

Lipkin/ Hornig/ Petterson says this takes up to 3 years for the immune system to become exhausted which I feel is a more generalized figure probably an average.

I have been sick a year and present with low:

VEGF
CD3a and CD4a

High:

IL 10
CD13
TNF
TGF-Beta 1

Positive
ENA but not ANA

From what i was told my immune system is exhausted. I am not looking for a DX or med advice.

Why if they are finding ME patients with underactive immune systems would you want to use Rutux or Cyclo? My understanding these are immune system suppresents?

Further I read for one hard to treat Autoimmune disease that is deadly (I think it had to do with the skin) they used the combo of Rutuximab with IVIG with good success. Could this be a possibility for ME?

Possibly Belubimab with Low dose IVIG. Low dose IVIG may have worked for some ME Drs.

I am just throwing out things from what I have read but would like to hear your thoughts?

To be honest, Justin30, I would never use terms like underactive immune system or immune exhaustion. Some researchers like to use these broad terms as a way of trying to understand things but my experience has been that the immune system is too complex to think in simple terms like this. It is a bit like saying that a chess player is underactive or overactive - what could that actually mean? What might be more relevant is that they tend not to Castle their King early - problems with autoimmunity are specific like that.

The reason for using rituximab would be if there seems to be a specific problem with production of damaging antibodies. Those antibodies might do almost anything to the rest of the immune system with cytokines up here and down there. But the root cause would be the abnormal B cells so rituximab would be the right treatment.

 

[BurnA]

Belimumab produces a much more partial B cell reduction and it does not work well in RA. It might be relevant for ME/CFS.

Just curious if Belimumab produces a much more partial B cell reduction would this not make it less likely to be relevant for ME/CFS ?

 

[Jonathan Edwards]

Just curious if Belimumab produces a much more partial B cell reduction would this not make it less likely to be relevant for ME/CFS ?

I would guess so, but only a guess.