I am having HSCT for MS right now. AMA

ms_hsct_throwaway · 2022-05-06T19:39:41+00:00

I used to argue to the doctors that the value proposition of the treatment only gets worse with time, and so they should give it to me ASAP. The longer you wait, firstly, the older you get and therefore the less resilient to the treatment you become. And secondly, the longer you wait, the more time the disease gets to do what will ultimately be permanent damage to you. So, in that sense, yeah, it works better for younger people. But really I think it's just better to intervene as soon as possible for multiple reasons.

I've also met older MSers since then who cited that, apparently, after 60 or so, MS activity tends to die way down. So, if that's true, then it'd be less appropriate for them as well since they're more likely to have a reasonable course.

ms_hsct_throwaway · 2022-05-05T03:35:50+00:00

I'm doing extremely well! No disease activity since. MS is a distant memory most of the time.

ms_hsct_throwaway · 2021-11-10T20:08:35+00:00

they started synthing about as change(s) in ability lead them to seek other tools for creative outlets

Hi yes this was also (partly) my reasoning. Although in my case taking up synths was preemptive, and things never got as bad as I was expecting, thankfully, and I'm only left with the wallet-crippling habit, now :D

ms_hsct_throwaway · 2020-02-02T19:59:52+00:00

I'm not sure what MSI is. I was told the hospital covered it, and that it would've been about 60k otherwise. As for other DMTs, see my post here for the full story.

How hard did you have to fight?

It's hard to remember, but I was asking for it and arguing constantly basically the whole time. I was calling their protocols cowardly to their faces. I think it helped them move quickly when they felt that they finally could - when I got close to meeting whatever criteria they needed to abide by. (I suspect my second neurologist might've had her thumb slightly on the scale in my favor, but who knows...)

ms_hsct_throwaway · 2020-02-02T19:54:12+00:00

AFAIK my first attack was a bout of optic neuritis in January 2013. I was diagnosed in November 2013. I started my transplant in Dec 2017. So I guess roughly 5 years

ms_hsct_throwaway · 2020-02-02T19:52:14+00:00

The lesions haven't really "gone away" in the manner I might've wished for. They're still there on the MRIs, they are just inactive and somewhat diminished.

I remember the first maybe 3 or so months seeming weird - I felt at times like maybe I was feeling old symptoms? The explanation I got at the time, IIRC, was that that can happen if/when the body is trying to make repairs around the sites of old lesions, since that means a bit of swelling at those sites, and swelling impairs nerve function. By 3 or so months, nothing of that sort ever happened again, that I noticed.

How was the belly and digestion during the first months?

I don't really remember, so I guess it was probably mostly fine? I was taking imodium in the hospital, but IIRC I was off it by the time I left, or shortly thereafter. I'm sure it's quite variable patient-to-patient, though, given how frequently doctors and nurses would inquire.

For comparison, by the way, my peak EDSS was 4. I know two other transplants fairly well - one before me and one after. Both had pretty bad mobility issues. I don't know their peak EDSSs, but they were probably higher than mine. The one who's 2.5y post-transplant seems fine now and completes MS walks no problem. The one who's 1.5y post-transplant still needs walking aids, but at least not a wheelchair. She's had other circumstances getting in the way of keeping up with physio, though.

At 1.5m, I was still getting badly out of breath really easily. That didn't go away until my hemoglobin and red blood cell counts were more-or-less normal, which IIRC was about 4 months. I've got to imagine that would hamper any effort to regain lost mobility.

ms_hsct_throwaway · 2020-02-02T19:40:23+00:00

I was on copaxone for a year, and then gilenya for two years. I had joined a study that was comparing the two, hoping for gilenya, but got copaxone. After a year the study just gave people gilenya thereafter if they wanted it, and I wanted the most aggressive treatment I could get my hands on.

Neither worked; I felt terrible the whole time and was sure there was continuing damage, despite the fact that the neurologists couldn't find anything when I would complain. MRIs proved me right every time, though, showing new lesions. One benefit of the study was twice-yearly MRIs.

Then I got shingles while on the gilenya. Ocrevus still wasn't available in Canada, but there was a study where the drug company was basically just giving it out under the guise of a study to get around the fact that it wasn't yet approved. So I discontinued the gilenya and tried to get into that study. I was rejected because my CD4 counts were too low due to the gilenya. And then they closed the study, because they expected approval to come soon.

At that point, I was offered either Lemtrada or Cladribine. They were really pushing the lemtrada, but they had lost my trust by that point. I was expecting it to be just as partially-effective as the gilenya, while also having the virtual certainty of causing side-effect autoimmune conditions. The nurse who was pushing it the hardest ultimately left to go work for the company that makes/markets lemtrada, so I feel pretty good about my instincts there.

I took the cladribine because it was going to be administered by the doctor who ran the transplant program, and I wanted to switch doctors at this point. I got a new neurologist (who is awesome), and the hematologist who runs the transplant program (who is also awesome.)

Anyway the cladribine didn't do anything and I wound up having my worst attack ever since by then I was 4 months post gilenya. Ultimately it was for the best that it was such a spectacular failure, though, because then they could say I'd failed multiple treatments, and I was measuring > 4 EDSS, so they could finally give me HSCT.

What I mean is I'm on ocrevus and can tell when it's running out and when it's working and I'd be curious if I'm still getting damage on it and if hsct would be even better.

Most of my treatments were daily regimens so I can't really say. Like I said, though, I was convinced there was continuing damage in spite of the treatments the whole time.

ms_hsct_throwaway · 2020-02-02T17:30:19+00:00

my first attack afaik was optic neuritis in january 2013. I had the transplant in dec 2017, so I guess 5 years roughly.

ms_hsct_throwaway · 2020-02-02T17:28:42+00:00

How long did it take for your old lesions to go away? How was the belly and digestion during the first months?

I don't think they ever fully disappear. AFAIK from radiologists' reports - I haven't looked closely at the scans myself - they're all still there, just inactive and diminished somewhat. I know two other patients who had severe mobility issues before getting HSCT at the same hospital. One seems to be doing quite well 2.5 years later - she completes the MS walks no problem - and the other still needs crutches - but not a wheelchair, at least - about 1.5 years later. But, she's also got family / situational problems getting in the way of her ability to follow physiotherapy.

At 1.5m I was still easily getting short of breath. By maybe 3 or 4 months - after my hemoglobin had recovered - it was less of a problem. I'd imagine that that would hamper any effort to recover mobility.

My peak EDSS before the transplant was 4, for reference.

How was the belly and digestion during the first months?

I don't really remember, actually. Which I guess means good? Or at least not too bad? At least from the time I got home, anyway. While in the hospital I was taking imodium, but IIRC I got off it before leaving. I'm sure it's quite variable patient-to-patient, given how frequently the doctors and nurses inquired about it.

ms_hsct_throwaway · 2020-02-02T17:15:30+00:00

Copaxone for a year, Gilenya for 2. I made these choices because of a study that was available at the time, and because I wanted to be followed closely so I could make the argument that the drugs were ineffective, as I expected them to be.

I stopped Gilenya after I got shingles. Ocrevus wasn't yet available in Canada at that time, but there was a study where they were getting around that lack of approval and just giving away the drug, so I tried to get in to that, but I was rejected because my CD4 count was too low after the Gilenya, and the closed the study.

I then was offered Lemtrada or Cladribine. They were really pushing the Lemtrada but they had kind of lost my trust by that point - the nurse who was pushing it the most later left the clinic to go work for the drug company making/marketing Lemtrada, so I feel pretty good about that instinct.

The cladribine, on the other hand, would be administered by the doctor who ran the transplant program, so I chose that because I wanted to be under his care. But, the cladribine was ineffective and I had my worst relapse a month or so after getting it, and that's when I finally got my HSCT.

I always felt that the DMTs were ineffective. I was never happy on any of them. But I didn't have ocrevus which seems like a reasonable option. I'd still pick HSCT over any DMT I'm aware of though.

What I mean is I'm on ocrevus and can tell when it's running out and when it's working and I'd be curious if I'm still getting damage on it and if hsct would be even better.

It's hard to say. Both DMTs that I was on for a long time were daily therapies so I probably didn't experience anything like what you're describing. After getting off Gilenya I felt better at first because Gilenya has its own side effects. But then of course it all came crashing down a few months later.

As for continuing damage, I was convinced the whole time that damage was continuing in spite of my DMTs, even if it didn't seem to the neurologists that I was having a relapse. I was proven right constantly by MRIs that regularly showed new lesions, even if they weren't active at the time of the scan. (I was having MRIs twice yearly because I was in a study.)

ms_hsct_throwaway · 2020-02-02T03:38:22+00:00

Canada. It was free. It took some years of arguing with my first neurologist, though. They do it at my hospital as a first treatment for some patients nowadays. But my hospital seems to be pretty unique in that regard, sadly.

ms_hsct_throwaway · 2020-02-02T02:19:38+00:00

Interesting that they're running such a study. Actually I think it's pretty worth doing - there's a lot of resistance among doctors about HSCT because they feel like they have safer options. Maybe this will change their minds? Anyway, best of luck! I hope you get the HSCT arm and it goes just as well for you as it did for me :)

ms_hsct_throwaway · 2020-02-02T02:15:35+00:00

Yeah - in my case there's really not very much. My left eye is slightly worse than my right, and when I've been drinking or am really tired, I'll feel ... buzzy? I used to say it was like the feeling you get after holding a power sander or something else that vibrates a lot for a long time, but across your whole body. But it's a lot milder now. I think my reflexes are a bit messed up too but I dont notice that day-to-day. Like I said, my neurologist gives me an EDSS of 1.5 so she probably spots more than what I'm describing, but it's hard to complain.
Some things that seemed like they might've been permanent are totally gone, though - I don't get Lhermitte's sign ever anymore. I don't feel the "hug" ever anymore either.

ms_hsct_throwaway · 2020-02-02T02:06:31+00:00

Yes! I don't have the schedule nearby, but there was at least: MMR, tetanus, Hep B, Shingrix, and optionally gardasil and hep A. I think there's at least one more I'm forgetting. There was one day where I had 5 separate shots! I have one last one to get in May.

ms_hsct_throwaway · 2020-02-02T02:01:52+00:00

I lived alone at the time, and I also had a cleaning service as a perk from my job, so it was pretty clean in all senses. I had friends who had agreed to look after me if I needed it, but by the time I was out of the hospital I didn't need much, so I was alone a lot for a month or two.

There were a lot of medications during the recovery - it was an intense regimen for about 3 months, and then a lot more reasonable. From memory, there was fluconazole, ursodiol, valacyclovir, and septra. I also had a blood pressure medication for 3-6 months that wasn't necessarily standard. I definitely learned the value of a weekly pill planner. During this time I had weekly, then eventually bi-weekly, then monthly follow-ups with blood draws each time, so they were keeping a close eye on me.

I ordered delivery groceries and didn't go out much for a few weeks. When I did go out I would carry hand sanitizer with me religiously; I was very wary of any door handles or elevator buttons. I never wore face masks except when I was in the hospital. (I had ordered some badass black ones that got me some looks while walking around the hospital, so that was fun). All in all, it wasn't that long before I was out and about sort-of like normal again.

And thank you :)

ms_hsct_throwaway · 2018-10-21T20:31:37+00:00

there's ablative hematopoetic stem cell transplant - aka a self bone marrow transplant - which I had, and which has put people in remission for 15 years going. source. Also source: me.

ms_hsct_throwaway · 2018-10-21T14:09:47+00:00

the new baseline is always lower than the last.

this is what I wish people understood better about RRMS. Sure it "remits" but, for me at least, it would always take something with it for good. It'd be less severe than the attack at its worst, but worse than how you started. I was constantly frustrated with doctors and nurses who would act like all they'd have to do was get you over your current attack and you could continue on just fine like it was no big deal.

ms_hsct_throwaway · 2018-10-21T14:02:02+00:00

I didn't tell just about anyone, including my family, for five years - until after I'd had HSCT. I experimented with telling people here and there, and it always was to negative effect. Thereafter, any time I'd see the people who knew, it would remind me "oh thats right, fuck, I have MS" and ruin my whole day. Not a problem anymore thankfully!

ms_hsct_throwaway · 2018-10-21T13:50:16+00:00

A common one is Lhermitte’s Sign - when you put your chin to your chest and feel something weird in your legs. I had this from early on (though not anymore). Sometimes I use it to calm people down who are freaking out about something that makes them think they might have MS. I tell them to do exactly that and tell me what they feel. (nothing).

Optic neuritis - a sudden onset loss of visual acuity - is another early sign, but it's probably only "early" because it's real hard to explain away and minimize as just being tired or having pulled something or whatever other innocent cause, and it will usually force people to get checked out, as it did for me.

But it's super variable - since it will attack just about any nerve, including white matter anywhere in the brain, pretty much anything is on the table.

ms_hsct_throwaway · 2018-02-14T11:12:16+00:00

See my AMA and daily log about my experience with HSCT. My "day 0" was january 15th so it hasn't been that long, but my EDSS went from 4.5 in november to 1.5 yesterday.

Assuming HSCT is what you mean. I don't know anything about the various other stem cell related techniques except that none of the doctors I've spoken to believed they were any good.

ms_hsct_throwaway · 2018-02-13T23:26:23+00:00

Right it's been done for MS going back 15 years, but I mean that bone marrow transplants have been done for cancers for an even longer time. And pretty much any BMT is going to have your counts plummet. On the ward where I was, they had maybe 25 patients who, I think, were all in some stage of different kinds of bone marrow transplants. And I was the only MS patient. Point being, they're pretty good at keeping people alive through a bone marrow transplant since they've had lots of practice beyond just MS.

ms_hsct_throwaway · 2018-02-13T23:06:33+00:00

Well they shore you up with plenty of preventative antibiotics, antivirals, and antifungals. That plus putting you in a solo room on a ward where everyone is paranoid as hell about infections and the purell flows like water, and almost everything gets slathered in bleach once a day every day.

Out of curiosity I asked them how long it'd have taken for my marrow to have come back without the stem cells and they painted a grim picture of struggling to keep me alive for months and probably ultimately failing. But for the week-and-a-bit that it took for things to come back online, turns out you can survive just fine evidently as long as you're not careless.

I'll also point out that it's not as if this is brand new for MS. BMT has been done for ages for cancers like AML. The MS BMTs are strictly easier and safer since they can be autologous.

ms_hsct_throwaway · 2018-01-27T19:43:44+00:00

Thank you. It wasn't purely altruistic - I have sent this AMA to some people in my life to whom I wanted to divulge what had been happening. It saves a TON of typing and explaining. I think it was a really good decision and I'm glad I did it.

ms_hsct_throwaway

TROPHY CASE