Are antibodies to blamw?

Everyday living
1

Dear All,

I have been on Rebif for some years, since it was first developed I think. I had found this very useful, but these post two years, I seem to have flopped back into the situation I was at before I started. I have read that some users of DMDs can develop antibodies to the drug. Does anyone know if this is what could be happening to me? Thank you to all who reply.

Best Wishes,

Moira

2

Hi Moira,

I have a feeling my MS nurse has said this to me in the past, that there may come a time that I have to change DMD’s as my body will just become too used to it…

Char

xxx

3

Hi Char,

Thank you for your post. I had read that our bodies just become too used to these. I just wish that our immune systems were not quite as efficient as that. I really don’t know what the next stage can be, but I should have an appointment with ‘he who will be obeyed’ (the neurologist) some time this year so he might enlighten me.

Yours,

Moira

4

I think there’s a test for “neutralising antibodies” (NABs). Perhaps you could ask for one?

If you do have them, then I think you would have to switch to Copaxone or Tysabri (unless Betaferon NABs are different? and assuming that Rebif and Avonex NABs are similar because they have the same active ingredient?).

Mind you, if you are relapsing while you are on Rebif, the neuro may just want to move you onto Tysabri without bothering about NABs tests.

Good luck with it all.

Karen x

5

I was on Tysabri and after 4th infusion I developed antibodies which ment I kind of had a serious side affect,
unable to breath (blood oxygene levels went low) rapid heart beat and I wanted to go to sleep in la la land. MS nurse managed
to stop infusion and stick a mask on me.

I was also on copaxone before and that did nothing for me with no side effects or any bumps with injection sites, it basically wasnt
strong enough to shut up my MS and immune system.

I think there is a difference in body getting use to a drug and drug antibody reaction, I would just speak to your neuro bod ask
whats the difference with drug effectiveness over time and developing antibodies.

They can do a seperate from the norm bloodtest to check.

6

Thank you Karen & Monty,

The more I read of this the more I am keen to see the big cheese, for him to test me for antibodies. I don’t know what I would go for instead if I had to change the drug, but knowing the big cheese, he would make all the decisions anyway.

Thank you very much for this freedback.

Best wishes,

Moira