Alternatives which work like Rituxan

[halcyon]

Antibodies do not normally bind to peptides.

Why does something like this work then?

 

[Gingergrrl]

Why does something like this work then?

Am curious about that, too, and hoping @Jonathan Edwards can explain. Also, (for the way it is being used in this thread) is a "Peptide" the same as an amino acid? I just want to make sure that I even understand what we are talking about .

 

[halcyon]

Also, (for the way it is being used in this thread) is a "Peptide" the same as an amino acid?

Peptides are short chains of amino acids.

 

[Jonathan Edwards]

Why does something like this work then?

Because if you set things up in the very artificial situation of an animal experiment you can get al most any result you intend to get. Antibodies will bind peptides and in an animal model it is conceivable that peptide could block antibody binding to the whole protein it normally binds to but in the long term the immune system is unlikely to be fooled this way I suspect. Moreover, with time you are very likely to get an immune response to the peptide that clears away the peptide leaving you back where you started. It might seem that all the antibodies to the peptide would be the same as the autoantibodies but it is not as simple as that and even if it was it would still make things worse in a different way.

 

[Gingergrrl]

It might seem that all the antibodies to the peptide would be the same as the autoantibodies but it is not as simple as that and even if it was it would still make things worse in a different way.

How would it make things worse in a different way? I am not sure if I understand what you mean? I could see the benefit being temporary and then stopping or even reversing but how would it get worse? Thanks!

 

[Jonathan Edwards]

How would it make things worse in a different way? I am not sure if I understand what you mean? I could see the benefit being temporary and then stopping or even reversing but how would it get worse? Thanks!

Because the aim of treatment is to block autoantibodies. If the peptide stimulates the formation of more antibodies then that is the opposite of what you want. If the antibodies bind to both self and peptide then you have more autoanttibodies.

 

[temple88]

Would myasthenia gravis meds be useful to us? Or is this targeting the wrong type of AchR?

I tried mestinon over the summer as my doc suspected MG. My usual time to muscle fatigue/burning/turning to cement is about 20 seconds. On mestinon it was about 2 seconds. It definitely didn't help me and my lab work came back negative. Single fiber studies were also negative so as usual, everyone was left scratching their heads.

 

[Jenny TipsforME]

I tried mestinon over the summer as my doc suspected MG. My usual time to muscle fatigue/burning/turning to cement is about 20 seconds. On mestinon it was about 2 seconds. It definitely didn't help me .

That's disappointing. Turning to cement is the main symptom I'm aiming to get to the crux of. I can usually stand 2 minute or so on POTS meds, less without. Highly disabling. I asked my POTS cardiology doctor about mestinon. I'd read some positive outcomes for POTS and ME but he dismissed it as just for MG (tho I'm not sure MG has been properly ruled out for me and I notice that it can be comorbid with other conditions). I've got a neurology appointment (after just 19yrs of ME ) in January so I'm planning to ask then.

 

[temple88]

I can't say it wouldn't help you, just offering my experience. The good thing is mestinon is very fast acting so you'll know very soon after trying it if it's going to make a difference for you.

 

[Jenny TipsforME]

@temple88 does the immediate negative effect for you mean something? If something that can treat MG, in you aggravates overlapping symptoms, could it indicate that you have an opposite problem? It doesn't sound like random side effects.

 

[temple88]

@temple88 does the immediate negative effect for you mean something? If something that can treat MG, in you aggravates overlapping symptoms, could it indicate that you have an opposite problem? It doesn't sound like random side effects.

Mestinon stops the enzyme acetylcholinesterase from breaking down acetylcholine which isn't readily available in MG, hence the muscle weakness. Problem is, if you have too much acetylcholine on board then that also causes muscle weakness.

What happened in my case is lack of acetylcholine isn't the cause of my issues so by taking mestinon, the muscle fatigue worsened due to the excess acetylcholine hanging around. Luckily you can try a low dose to see if it benefits you and you'll know almost immediately. Mestinon wears off quickly which is also nice if it exacerbates things.

 

[Jenny TipsforME]

Problem is, if you have too much acetylcholine on board then that also causes muscle weakness.

yes this is what I meant. Could you have too much Ach? Just a thought.

 

[temple88]

At this point, anything is possible! I don't think that would explain the immune-related symptoms of feeling fluey, chills, swollen lymph nodes, etc though so I don't think I'm going to keep pursuing that path.

Good luck at your appt and happy holidays !

 

[Marky90]

Bone marrow suppression at the doses likely to be used is not a big issue. I am not sure what candcer fatigue would be if we are talking about a side effect of a drug. For most people the real problem is that it makes you horribly sick.

I was thinking more of the potential of cyclo to mess with the immune cell production in the marrow, there is some elevated risk of MDS after cancer treatment, but obviously there are higher doses in the latter. With cancer fatigue I meant the ME-like level of functioning some cancer patients get after treatment, which often last years, or til they die.