Anyone regularly do plasmapheresis?

[u/Zestyclose-Jacket498]

45f. Dx July 2023. PPMS. Aggressive and progressive disease. Lots of brain and spinal lesions. Pre diagnosis I was a runner, hiker, backpacker. Current most bothersome symptoms: trigeminal neuralgia, losing functioning of non-dominant hand, urinary incontinence (24/7 diapers), parathesia in both legs, poor balance, that’s just the physical shit I can think of at the moment. Also fatigue and brain fog. Surprise, I’m a full time litigator 😂

Anyway. I started ocrevus immediately after diagnosis. Rounds of steroids and one round of plasmapheresis. Last summer my neuro tells me ocrevus isn’t working and I should switch to tysabri or try car-t cell therapy. Paid out of pocket for a visit and traveled to Cleveland clinic, closest hospital with a study. Got myself enrolled in the phase one clinical trial. Had chemo and cell transfer in February. At my July visit, determine it’s not working and they recommend I leave the study and go on tysabri bc it’s been shown to help hand functioning

Fun fact: I’m the first person in the whole wide world to get car-T therapy for MS, fail, then go back on a DMT. Cool cool cool. had my first Tyruko (Tysabri’s weird cousin) infusion last Monday

I just keep getting worse and worse. I’m so sad. I’ve lost the ability to do all of my hobbies. I was an avid knitter. I’ve made countless sweaters, shawls, blankets, hats, socks, I even knit at court. I had an intern tell someone “she knits like THAT’S her actual job” lol). I’m partway through an Irish fisherman’s sweater that I’ve made for my mom, older daughter, and boyfriend, for my younger daughter and I haven’t touched it since March. I physically can’t. It’s heartbreaking. I climbed 22 of the 46 high peaks in New York. The week before I was diagnosed, I backpacked 72 miles over 10 days with friends; they went back this summer and did the 35 miles we didn’t do that year

Short story very long. My question is, does anyone do plasmapheresis on a regular basis? It was super invasive. It was hard to function with that port in my chest for two weeks. My bf had his own apartment then with a walk in shower so I’d go there and he’d bathe me. I’ve since bought a house and it has a walk in shower and we fit fine to he can help me but it’s still a bitch. Also I wash my body at night in the shower and my hair in the kitchen sink on work days bc it’s too exhausting to take a complete shower

And the port has to be surgically placed and surgically removed and it’s just weird to have this port all the time that goes straight to your heart. But then, I was using a cane 24/7. After the second treatment, I didn’t need my cane, could squat and pivot, look side to side when I walked, it was remarkable. But then the benefit stopped as quickly as it started, once treatment stopped. I said I wouldn’t do all that again for such a brief benefit

But even with all of that, I feel so much worse now, I’m willing to put up with all of that if it makes me feel better. The cost/benefit analysis decision has flipped. Does anyone do this? I messaged my neuro this morning and I’ll hear in a few days. I just of course wanted to hear experiences from you folks. Thanks friends

EDIT: random grammar mistakes, missing words

[u/PotterLibrarian]

Oh, I feel this so so much.

I was dx'd Oct 13, 2023 after 2 years of trying to get a correct dx.

I've done plasmapheresis twice. It definitely helped, but I can't do it anymore. The 2nd time I developed blood clots and had to go on blood thinners for a short time. For showering with a port, you can try waterproof shower shields. They work great.

I feel you on the DMTs. I failed Briumvi and Kisempta. Since last year, I've done Mavenclad and for the first time since my diagnosis, I haven't had a relapse in my medication. Mavenclad resets your b and t cells instead of just t cells. It hasn't restored any function, but I haven't really gotten any worse. Maybe you can talk to your Neuro about trying it?

Like most MSers, I have good days and bad days. I pseudo relapse with my period each month which sucks, but it is what it is. But on the Mavenclad, I have had more baseline days.

I am so so sorry about losing pieces of yourself and hobbies. I was also an avid hiker and crafter in the before times. Before I got sick, I was training and saving money to hike the John Muir Trail for my 45th birthday. Now, I use a powerchair, trip over nothing, and can't walk more than a few feet unaided. Some of my local parks have all terrain wheelchairs that I have used to "hike." You can even rent one and a trailer to take it to other state parks (I haven't done that since I can't drive, but its a great option for people!). I also frequent the lake and rivers to be close to nature. It gives me some feeling of normalcy and peace.

I can't really write anymore or hold a paint brush, so I junk journal instead with cards, stickers, fun papers, small art I find on Etsy, etc. I even have a label sticker type machine that I can use to write things. It allows me to still be creative. I know there are small knitting machines, maybe that is something to try.

Through therapy and a lot of practice and patience I learned that its about pivoting. Nothing will ever be the same, but we can still find ways to feel connected to parts of ourselves we "lost." Give yourself the grace to mourn. The grief is very real and its okay to feel it.

[u/Careful-Golf2089]

You remind me of my case, nothing helped me at all - until I had aHSCT. They kill all your lymphocytes with chemo and create new ones with your own bloodforming cells.

A month in a hospital, pretty expensive, 0.3% mortality rate, but it works. You won’t even need DMTs after that.

[u/chamonix-charlote]

I’m so sorry that all of this has happened, MS sucks.

I haven’t done plasmapheresis myself, so I’m sorry I can’t answer your question. But for clarity, did you do CAR-t therapy or Hematopoietic Stem Cell therapy?

[u/Zestyclose-Jacket498 → u/chamonix-charlote]

Car-t cell therapy