OK, anyone have any experience with Cellcept or Ibrutinib?

[Holley]

Saw my hematologist this morning. We discussed my rheumatologist's suggestions as to medication to suppress my APS. He added two to consider to the mix.

[HollyHeski Administrator]

Sorry no experience with either - but at least your specialist is open to ideas, I think relates to Lupus - good luck

[KellyInTexas Administrator in reply to HollyHeski]

One of my Texas hematologists was considering cellcept. He did not have a lot of experience with APS, but did have more experience with the lupus side. I think he did understand the relationship of cellcept and pure Lupus. He did not understand the clotting aspect very well.

I hope this helps you.

[Yllek]

Hi

I have primary APS but continue to have some symptoms and issues with an inr of 4.

I tried azathioprine last year but it wasn’t suited to me.

My neurologist is now starting me on cellcept - known as MMF or mycophenolate in the UK.

I’ve recently had major surgery so my start date was postponed to aid my recovery. However, I see my neurologist next week and I’ll be starting the drug shortly.

I have briefly spoken to a top US Dr who has treated several of his APS patients with cellcept and has had a good response with the drug. He has only treated those with neurological symptoms as far as I’m aware.

So I’m feeling hopeful this is a good choice of drug for some of us. I remain cautious but optimistic!

Good luck.

Kelly 🇬🇧

[MaryF Administrator]

I have not had these myself I understand that they do suppress the immune system, are you to be on them long or short term? hss.edu/conditions_recent-d... ncbi.nlm.nih.gov/pmc/articl... I hope these are a useful read for you. MaryF

[Holley in reply to MaryF]

Mary,

Thank you so much for forwarding these articles to me. I find them really helpful and usually forward them to my doctors.

Holley

[KellyInTexas Administrator]

Holley,

I have waited to get back with you regarding your reply to me on your reaction to Rituximab.

I have specific insight as this has happened to me as well with glucagon ( to slow bowels) for an image for a scan and I coded - had to be put briefly in icu.

I have a propensity for this same reaction. Out both ends at the same time. The scan was in a hospital so a crash cart was brought in. b/p was 70/30. Vomiting / diarrhea would not stop. I also went into seizures...

It was a MAST cell reaction I now know. ( per Jill Schofield.) But very severe. Also I have dysautonomia we now know. I’m also now on an anti cholnergenic medication twice daily. Mild POTS.

I had my first Rituximab infusion yesterday. Went very well. My Rheumatoligist followed a much more sensitive protocol.

I wanted to see how mine went before I told you. If you have any questions, please private message me as this is just an over view.

Each patient is so specific, no patient will ever react the same. The point is, there is a very specific protocol for APS patients recieving these infusions. I’m not sure how the first one was handled, but if you have any questions, please feel free to private message me.