"The Disease No One Talks About — My IBM Journey"

I was a backcountry hiker, swimmer, runner, and exercise workoutaholic! . Someone who thought her body was invincible.

And then it wasn't.

In this episode, I'm pulling back the curtain on my full Inclusion Body Myositis journey — not the polished version, the real one. From the moment I couldn't get up off the floor, to sitting in an infusion chair for two consecutive days every four weeks, to a syncopal episode that landed me in the emergency room — this is what living with IBM actually looks like.

I walk you through every test I had, what my muscle biopsy actually showed, what my enzyme levels have looked like over two and a half years of treatment, and exactly what goes into my IVIG and Rituximab infusion protocols — the drugs, the doses, the rates, the reactions, all of it.

Because when I was first diagnosed, I was starving for this kind of information. And I couldn't find it.

IBM is rare. The community is small. And too many of us are navigating this alone, piecing together information from medical records we barely understand, sitting in waiting rooms, wondering if anyone else knows what this feels like.

I do. And I'm done staying quiet about it.

Whether you're newly diagnosed, years into your own treatment journey, caring for someone with IBM, or just trying to understand what this disease actually is — this episode is for you.

You are not alone in that infusion chair.

In this episode:

1. My full diagnostic timeline — EMG, muscle biopsy, MRI, genetic testing and more
2. What my biopsy actually showed and why the diagnosis wasn't straightforward
3. My complete IVIG protocol — Gammagard 10%, 50g, every 4 weeks, now into Cycle 34
4. My Rituximab (Riabni) protocol and what happened when my BP crashed post-infusion
5. The post-IVIG migraine that led to a syncopal fall and an ED visit
6. The Benadryl reaction that changed my protocol permanently
7. What CK and Aldolase levels actually tell you about disease activity
8. A free downloadable IBM Treatment Reference Card — link in show notes - right here! 

https://drive.google.com/file/d/1E9P7H6uLhkkVwko4IQuq9Q6_YQfb4ncu/view?usp=drive_link

Alicia D. Polak
Chief Enabled Officer
Email: alicia@thedisabledcompany.com
Instagram: @aliciathedisabledcompany.com
Website: www.thedisabledcompany.com

Transcript

SPEAKER_00 0:00

Hey everybody, it's Alicia from the Disabled Company. I'm the Chief Enabled Officer. So I want to welcome everybody. So come on in and drop a hello so I know you're here or that you've been here. So today I want to walk you through my complete IBM journey from the very first symptom through every test, the biopsy, and the full treatment timeline with real dates and real numbers. I've been going through my actual medical records to pull the specifics because I know how much I wanted that kind of detail when I was first navigating all of this. So let's get into it. Firstly, you may want to go to the link that you'll find in this podcast. And what I've done is I've actually shared with you my entire treatment plan. And I'm hoping that this is something that's helpful for you, and I'm happy to make something similar for you as well if you reach out to me. Contact details will be below. So how did this all start? My symptoms started in early 2022, about nine months of like progressive bilateral proximal weakness, and that means my hips, shoulders, and neck were more affected at that point than my hands and feet. And I think a lot of you know I've been a really avid, very competitive hiker, um, backcountry, camping, and suddenly I couldn't get off the floor, and the stairs were starting to get hard, and my arms and legs were really just feeling so consistently or constantly tired and weak. And things are definitely worse in the morning. I know a lot of you know that too. My my neck felt so weak, and sadly it has absolutely zero strength today. So I had grip weakness in my left thumb that had been developing over the prior four to five months, and it was a real kicker. All of this started four and a half months after my mom died from IBM, and I really want to flag that as something important for this community that my mom had IBM. She developed progressive weakness, and I think she was about 50, and she passed away at 79. She had a confirmed muscle biopsy at Johns Hopkins, which did show IBM. So this diagnosis was already kind of a deep fear of mine when I walked in that first neurology appointment, and she had actually passed away just two months before. So this is what I call the diagnostic wrap-up and all the tests. And you'll see all of these on the link that I provided for you. So my neurologist was Dr. Trent Hodgson at Kaiser Oakland. He began that full workup in August of 2022. Initially, um, his clinical impression was actually that my pattern was more consistent with an acquired autoimmune myositis rather than IBM, because the speed and the distribution of it didn't fit classic IBM. He expedited this full workup, and here's everything that was done. So August 22nd were the initial labs. It included an extended myositis panel, a perenopolastic panel, which was both negative, CBC, BMP, like Boy Mary Peter, a nuclear antibody panel, HIV, hep, BC, quantiferin, Lyme, ACE, heavy metals, lead. They were all essentially normal or negative. So homocysteine elevated at 40.4 and B12 at 516. He also ordered CT scans of the chest, abdomen, and pelvis to rule out any underlying malignancies as a cause of the myopathy. And this is standard protocol. A month later, we did the EMG and nerve conduction study that was done by Dr. Hodson, and the results showed a very clear what's called myothopic, myopathic process, and the problem was in the muscles, not the nerves. They found those what are called myopathic changes in the right deltoid, what's called the vastus lateralis, and the vastus medialis. So there was no evidence of neuropathy and what's called no membrane instability. In September, in the next month, we did the skeletal muscle biopsy, a left lower extremity, quadricep, that's the big one. I must say, please don't do it under local. I highly recognize or advise against it. Full disclaimer, I am not a doctor. I am not giving medical advice, it's just my opinion. So that that big biopsy, the one that most of you know about or will know about, that pathology showed what's called inflammatory myopathy with some features of IBM. So those specifically, and this is all in the notes, it's called a TDP4-3 positive fibers, a lymphocyte invasion of muscle fibers, a CD8, which was greater than the CD4 T cell ratio, an MHC1 staining pattern, some mild neurogenic features, what's called denervation and reinervation, but no definite RIM vacuols and no excessive what's called CLX or COX negative fibers. So this is still the case. It pointed towards IBM, but it's not a clean textbook diagnosis. So the pathologist then recommended what's called a clinical correlation. And a Dr. Jennifer Ziskin, these are all within Kaiser, reviewed the case and concurred. And this ambiguity has been defined over the over the years. In February of 2023, I did an MRI cervical spine. I'm having tremendous pain in my back, and that showed multi-level spondylosis and facet artherosis, which is most pronounced at my CD5-6 and C67. I have significant neuroforminal narrowing and disc ostrophyte complex flattening of the ventricle cord at those levels. So this has added another layer of complexity, and to put it mildly and bluntly, my back hurts like you know what. In January 2024, they did additional labs ordered by neurology. It's an NT5C1A antibody. That NT5C1 antibody is an IBM specific antibody test. If you haven't had it, you might want to ask for it. They repeated the CK, the ADOLA's, ES, ESR, CRP, B12, the heady metals, copper, MRI, and then they did an MRI of what are called the bilateral thighs and the left forearm. That was ordered to evaluate the pattern of muscle involvement more precisely. In January of 2024, I had a medical genetics consultation with a doctor named Dr. Eric Muller at Kaiser in Oakland. So they did this given my maternal family history. They did a whole genome sequencing, was ordered through a company called Variantics, Varian Nicks, sorry, and you'll see all the my pronunciations on some of these things is a little off. Genomic Unity, proband only with a blood draw, and no prior genetic testing had ever been done, and the results I just awaited them. So what's my muscle enzyme history look like? I'm gonna give you kind of the short of it. Um today, so it started at with the CK at 1657, and then aldoise at 18.1, and then it's gone all the way up to the highest was in March of 2023. At that point in time, the CK was 2288 with an elderly 24.8, and then it's still it is actually through the roof. It's probably about 7,000 on the CK right now, and I'll come back and confirm that. So my treatment timeline has been in October of 2022. I was started on parentosome with 50 milligrams daily. I had some initial improvement in strength, my CK normalized, and my team thought this when you have a positive, a good response to steroid, they thought that that was pointing away from IBM because classic IBM typically doesn't respond, but I did respond at first. And then this goes on and on and on with the prendosome wean failed, the CK rose sharply on lower doses, and my neurologist described it as an aggressive disease with a high steroid dependence. So at that point, they decided to add rituximab. So they added rituximab every six months, and then that started in June of 2023, and then the I will have another um round of rituximab in the in this Thursday. So for rituximab, aka reabne, I've tolerated it pretty well. Um, no problems. Um, no actually no reactions to reabne. The IVIG, or called GammaGuard, 10%, they started me that in August of 2023, every four weeks, um, and it was four consecutive days or five consecutive days, just depending on my tolerance. So I'm gonna kind of give you the cliff notes about this. Um it has been okay. I have had one bad experience where I had what's called an unwitnessed cynocopal episode at home. So I was just very lightheaded, and I actually fell into a closet door, hit my head, and was knocked out, and went to the ER. And they attributed that to a combination of migraine, dehydration, and what's recalled reduced intake post-IVIG. So um, hey everybody, just FYI, IVIG migraine is real, and dehydration after infusion is a real risk. So please eat, drink, and have someone with you. Um, I have my I experience migraines anyway, so I do take sumatriptin before again. Not a medical doctor, no medical expertise. I'm just relaying my story in hopes it could help. So I have completed, I continue to be on my 34th round of IVIG. They stopped me for a while, but um nothing is really working. So I have even tried Rhiabne or Cirumulus that has not worked. More on that in another episode. So I am just back on trazidone, honestly, to help me sleep. Sumatryptin for my migraines is needed, and we're looking at a subcutaneous type of IVIG you can do at home. So I'll follow up with you after I start that. So here's the full picture, that's the full picture. Two and a half years, an EMG, a CT, a muscle biopsy, a cervical spine, MRI, multiple additional labs, including IBM-specific antibody testing, whole genome sequencing, and an ongoing regimen of reabne every six months, an IVIG every four weeks. The prendazone, I don't take any of it anymore. So I'm sharing with you real dates, real numbers, and those real complications, which included that fall. And I had a Benadryl reaction because they put Benadryl in the bag with IVIG. I now take it orally. So let me know if you have any questions, and if you're somewhere in the middle of your own diagnostic journey, sitting with a biopsy that's not perfectly clear, I see you, this I hear you, this disease doesn't always give us clean answers, but we have to just keep showing up. So you can reach out to me, Alicia at the Disabled Company. Again, that's Alicia at the Disabled Company. You're on my website, and feel free to reach out to me. I'll try and help anyway. If you'd like me to do a summary for you, um, of course, you'd have to share medical records, but if you want to cross out anything, I'd be happy to make you one of these summaries that you can take with you to other appointments. All right, we are all warriors. Be well, go well. And my constant plug that I cannot help myself, it is medically proven that animals will lower your stress. So please adopt. Don't shop. If you're looking for a fur baby, reach out to me. I will help you no matter where you are to find your perfect match. Be well.