Plasmapheresis treatments

[Byourownadvocate]

Just received my 5th treatment. Doc saying not seeing the results they expected. Anyone else have this Tx and can give me idea, how many, when you saw results? Will be discussing options with docs Monday after they discuss…IVIG or another IV tx starts with an R (sorry, brain 🧠🙄). New here, trying to figure out the site. Have visual disturbance, many neurological problems. As I’m browsing, I think I’ve found my people…you all seem so educated and can relate…I shall make it a point to learn how to navigate this site and get advice and support…

[lupus-support1 Administrator]

Do you mean Rituximab (Mabthera)?

With good wishes,

Ros

[Byourownadvocate in reply to lupus-support1]

Yes

[lupus-support1 Administrator in reply to Byourownadvocate]

I have had Rituximab for SLE & lymphoma. It's a very powerful drug. I wish you well.Ros

[KellyInTexas Administrator]

Hello,

I’m on rituximab - 1000 mg every 4 months- given as a set. ( 1000 mg per dose 1/2 and two weeks later again same dose 2/2 completes a set.)

Just finished a set yesterday. ( Dec 7 andDec 21.)

My neurologist was going to add IVIG Octagam, but I got a superficial leg clot on the day I was to begin, so it was decided by team ( heme, rheumatologist, and neurologist) best not to do the ivig for now.

If you do move forward, it’s best to maybe do in two days very slowly - first time. Also start a “ mast cell cocktail” a months before to stabilize the mast cells.

I do this every day now anyway. Certainly very good for the rituximab infusions.

I’ll tell you what my neurologist recommends and you can run it past your neurologist. ( it did lower my inr so I had to adjust my warfarin but I think it has stabilized it a little.)

The rituximab has not helped tremendously- but the question is, “ would I be worse without it?”

Running a higher inr has helped control the clotting the most, and adding Amovig 140 had helped the migraines. Ubrevly for breakthrough ( abortive).

Zero dairy, zero gluten, and following the basic mast cell activation syndrome protocol has been the keys so far.

I’ve clotted through everything… so warfarin it is for me at this time. But I run a really strange/ unusually high inr. ( proven out needed by scans shown clots / DVT’s when lower. )

This is why the hesitancy with adding the ivig.

[kiminabmw in reply to KellyInTexas]

Hi Kelly!! Just want to wish you a happy and healthy holiday season!!

[kiminabmw]

My nephew had Plasmapheresis for almost a year. Initially he had it once a week for months, then every 2 weeks and finally every 3 weeks before being able to have the chest port removed. He also had IVIG while in the hospital, and SCIG once he came home, which had to be given after his Plasmapheresis treatments. He also had Rituximab both in the hospital and in an out patient setting. For him, it took a combination of treatments, but he suffered from CAPS and his lungs would then take turns at clotting and hemorrhaging.

[Byourownadvocate in reply to kiminabmw]

I’m bouncing around here, following stories, old and new. Thank you for sharing your experiences, I’m hoping all well

[Byourownadvocate]

Hope I’m replying in right spot, fir those who have responded, advise is appreciated, I had my port removed today. Doc says I hit max # of plasma tx. I will follow up w/ hematologist Monday, docs saying best option next is the IVIG, rituximab. I’ll check back, for comments, visual issues with this “fit” (that’s what I call it)…thanks..nice to talk with people who understand

[MaryF Administrator]

Not had that one myself, but glad you are talking with lupus-support1 who like others on here as highly articulate information regarding their own experiences I hope it works for you in the final stage. MaryF

[Byourownadvocate in reply to MaryF]

Very helpful, gives me hope…thanks

[lloydyuk]

Hi I’m not sure if this is relevant to you? I was hospitalised back in 2013 with CAPS. During intense treatment my records indicate I had a total of 20! I think they were done in batches rather than continuously. It’s my understanding this was carried out in conjunction with the drug Rituximab. Not sure if that helps? Hopefully the results you’re hoping for come through soon. Best wishes. Danny

[Byourownadvocate in reply to lloydyuk]

It does help, you’ve been well since? I have appointment tomorrow, hopefully find out a treatment plan…just want to feel better…thanks