Why I built another titration tool, this time for titrating subcutaneous IG (ScIG Pilot)

Why is everything a titration problem; why does the traditional healthcare / research system not solve titration for so many therapies; and why do I always find myself having to do it?

Good questions that I won’t answer (because I can’t), but it is a good introduction into what I have been working on. I built a titration simulation tool for clinicians and people who want to explore different adjustments to dosing immunoglobulin, especially through subcutaneous methods. AKA, subcutaneous IG, AKA ScIG (rhymes with “rig”).

What exactly is the problem?

ScIG is studied in very few conditions – the approved FDA indications are generally for PI (primary immunodeficiency) and CIDP (chronic inflammatory demyelinating polyneuropathy). But, ScIG (and IVIG) are used to treat a lot of autoimmune conditions (often used off-label, because the few other conditions studied have a much smaller population studied and lower-quality evidence bases). Thus, there are no approval studies nor good data for these other condition use cases. Instead, there is a smattering of literature showing that occasionally it works here and there. The dosing regimens are based on the PI/CIDP studies and there are very few of those studies beyond product-specific studies. ScIG has mostly been tested at a 7 day interval (meaning once per week) and there’s one study checking to see if you do it every 14 days (every two weeks) but double the dose to maintain the total dose per month, you get about the same outcome…that is, in people with PI, which means they were measuring infections. That doesn’t answer the “does it work” question for most other use cases for ScIG, which is a variety of other autoimmune diseases. It also doesn’t appear that they tested lower doses (?), so we can’t tell if the same dose over 14 days was effective because they doubled the weekly dose for the 14 day regimen they studied.

But does it work well if you do the same dose every 9-10 days? No one can tell you that, it hasn’t been studied, so if a patient is struggling with every 7 days scheduling, they may benefit from a schedule change, but there’s no data or guidance from research for the clinician to help estimate whether that may be ok, or a problem. Or, what happens if you slightly drop your dose by 10mL? Or what happens if you split your dose across 14 days? What happens if your dosing is evenly split over time or very differently split based on the pre-filled cartridges you have available?

Clinicians don’t often seem to prescribe ScIG to very many patients, so they also don’t have a strong feedback loop of data on alternative dosing regimens. And most indications are off-label and diverse, so that further dilutes that data stream: what works for someone could be unique to their disease rather than useful to extrapolate to everyone on ScIG.

Why does this matter?

ScIG is dosed based on body size. If you have a larger body, you have a larger dose. You are limited to how much you can infuse per site which influences how many needles you use. Needles have a risk of causing bruises and lumps (resolving to small clots of tissue that can sometimes take weeks to months to go away), so in some cases fewer needles is ideal, but this then drives up the size of the fluid depot which can be painful due to skin stretching and the amount of fluid that has to be cleared. It is a tradeoff between all of these factors. And, over time, people may have less skin real estate for various reasons. But, there’s no tool that helps patients make this kind of tradeoff. Current dosing calculators can help with dose and volume and figuring out infusion times, and tracking apps can record what happened, but they usually do not show what different schedules might mean over time. For example, whether doing smaller amounts less often changes the overall amount dosed, whether this creates bigger highs and lows in IgG levels, or simply reduces the number of sites. There’s also the question of how much time it takes for these varied dose schedules given the tradeoffs where fewer needles means larger depots and slower infusion times.

I wanted a tool to make those trade-offs easier to see. I wanted to be able to compare possible schedules side by side, showing the expected pattern over time, the amount per week, the number of infusion sites, the volume per site, and also model what the impacts are for the IG itself.

ScIG Pilot

ScIG dosing decisions often involve trade-offs among dose interval, total dose intensity, infusion volume, number of sites, per-site volume, and patient tolerability, but existing product calculators don’t cover this. They generally are designed for clinicians or pharmacists and focus on narrow tasks such as converting weight-based dose to volume, estimating sites or infusion time, or supporting labeled weekly/biweekly schedules. Published PK models describe ScIG absorption, peak/trough behavior, and exposure under standard regimens, but these are not available as a practical tool for comparing based on real-world constraints.

ScIG Pilot is a literature-informed simulator that compares candidate ScIG schedules against a reference regimen (aka a standard 7-day dosing schedule), showing normalized exposure curves, predicted peak/trough patterns, weekly-equivalent dose intensity, site burden, dose volume per site, and infusion frequency. (It is also open source.)

It can help someone think through a scenario and ask these types of questions of a proposed change:

  1. If I change the schedule, how does this change the volume I am getting over time? How does this compare to the existing schedule?
  2. When might this dose change impact the body?
  3. What is the burden trade-off: sites, dose per site, infusion days, time per infusion, longest gap? How does this stack up over a month or a year?

Then, based on outcomes (does it work) and various preferences (less time; fewer sites; smaller fluid depots; etc), someone can decide what works for their scenario, or at least have visuals to help them think through a decision and understand various tradeoffs. This is also helpful when trying to estimate out to longer time frames, for example: not just what this regimen does in a month in terms of number of sites, number of infusion days etc; but also how does this translate to a year of this therapy in terms of number of infusions and sites, etc?

ScIG Pilot: a subcutaneous immunoglobulin titration tool, a blog post by Dana M. Lewis on DIYPS.orgIt can be really hard to titrate these types of therapies and infusions, because there is no good data. I’d love to see studies in future collect this type of data or have repositories (like I described here) that are not limited to one disease indication, so a patient or clinician could go and research across populations to better get some data to triangulate from to better inform a subsequent decision to go on a therapy or change a treatment regimen. Right now, there are no visuals, no data, and no tools. But now, for this, there is at least ScIG Pilot to help visualize and triangulate across what little data we do have.

(And it’s open source so if you have ideas to improve ScIG Pilot or suggestions to make the models more useful, please feel free to open issues or PRs or email me to discuss – Dana+ScIGPilot@OpenAPS.org)

An update of what I think about my exoskeleton after ~1000 miles of wear and tear

Reader, I bought longer shorts.

Chafing was my main complaint about wearing an exoskeleton. (Here’s what I got, why I got one, which one I chose, etc. You can also read a second post I wrote about a second version I tried, as well). I got my exoskeleton in July 2025, and now in August 2026, I’ve put close to 1,000 miles (!) on my legs with an exoskeleton, everything from walking, hiking, cross country skiing (classic), and a tiny bit of running.

Because of my situation (which is not something that translates to anyone else), I wear my exoskeleton a lot. I’m also an active person, although my activity level is down from before, it has gone up again (not all the way to my old baseline, but well out of the lowest levels I was before getting an exoskeleton). Thus, a thousand or so miles using the exoskeleton in 11-12 months of using it. Because I wear it for just about everything, and for long hours at a time, and started using it last summer, I would get chafing from the ongoing use and heat and humidity of many-hour sessions with it. (For example, 5-6 hour hikes). I wrote about it in my first post, but I had tried everything from wrapping the straps on the exoskeleton to pre-taping my legs so the straps and pads didn’t rub. I eventually got all the chafing to heal and rigorous pre-taping at the first signs of rub helped minimize it, so that’s what I planned to do this year as well once it got warm enough to switch from walking and hiking in pants to shorts. But…this year, I had other reasons to change things (including the fact that I now do subcutaneous infusions of large volumes in my legs which coincidentally makes my legs very sensitive to additional tape), and the pre-tape method was no longer a viable option. Instead, I sucked it up and bought a few pairs of longer shorts that came down to my knees. I had avoided doing this because I thought it would be hot, but I picked a few to try including some that are looser around my upper leg (more like jogger pants through the thigh and hip) and they are not too much warmer compared to bike-style shorts with a 7” hem that I used to prefer for walking, running, and hiking. And…they work. The pad and straps rub mostly against the shorts and don’t cause the cuts and abrasions from chafing on my legs. Woohoo. So, TLDR I bought long shorts (11” works for my leg length), and that’s what I’ll be using during shorts season moving forward. (During winter, there was no problem over pants for walking and classic cross country skiing.)

Activity changes with an exoskeleton

I originally thought I would only wear my exoskeleton for hiking (to help me with stepping up, rocky terrain, etc.). In my unique situation, though, my muscles overcompensate for muscles that are not working (firing/getting the signal/reasons unknown) and cause a really extreme sensitizing feeling that can last for days and make it really uncomfortable to walk. I did enough A/B testing to figure out it was better to do all of my long (more than a mile) activities using the exoskeleton. I was able to bring my activity levels back up, not quite to baseline (I was an ultramarathon runner before), but to a reasonable level. This meant more miles of walking on my beloved paved trail most days of the week; more hiking (with more back to back days) with longer trail choices and also no longer being intimidated by the elevation gain profile any more.

A big change for hiking was not just more miles, more elevation gain, and more days of hiking…but also how I’m hiking. I had started to use poles to compensate both for lung/chest muscle weakness and balance/stability on rocky terrain (which I didn’t know at the time was likely from that missing muscle signaling/firing so I was compensating with poles and arms for lower body changes). But now, even coming downhill on rocky terrain or big rocky steps, I rarely find myself pulling out my collapsible poles to use. Rarely meaning I think I’ve done so three times so far on hikes out of ~30 or so this year.

I have more confidence stepping, whether that’s stepping across rocky areas; crossing a rocky stream; stepping down a step; or taking big single leg step-ups (like stepping up onto a boulder). I even think, as a result, that I’ve managed to build some strength back up in both legs to facilitate stronger single leg step-ups. This is likely because the exoskeleton helps me swing my leg up farther than I could swing it and ‘reach’ for a step, but now I have more power to finish the step, driving the force through my leg to come up and through the step. (The exoskeleton does a tiny bit of force generation down, but I still do 90+% of that effort). That’s awesome both because it’s cool to see myself gaining strength as a general concept, but it also shows me that not all my muscles are impacted by whatever I’m dealing with, and it is still possible to gain strength. (Given my thing is technically undiagnosed, that’s possibly a very powerful signal we can use to test future hypotheses with.)

It’s also nice to not have to use poles because then I don’t use up my hand muscle power gripping my poles (since my hands are also impacted somewhat), so while the exoskeleton only works on my legs, it results in decreasing the physical impact to other areas of my body as well. Again, a lot of this is unique to my likely rare situation, but I have been pleasantly surprised to think about how improving the ability to stride or step up overall helps with stability on even surfaces, and that’s something that other people likely would experience too even in different body situations.

I also tried and loved using it for classic cross country skiing over the winter. “Classic” cross country skiing refers to where there are two tracks in the snow and your skis glide along in these tracks (or path). I wasn’t sure if the exoskeleton would work for the motion, but because you lift your leg up and forward like a step, the exoskeleton does help with that leg lift motion from the hip, just like walking. And like walking and hiking, I was able to do more miles of cross country skiing than I was last season while causing fewer issues from my muscles not firing correctly. I still was limited in some cases by my lung/chest muscles, but my legs were usually not the limitation in the muscle-disease-sense. I didn’t quite get back up to my mega ultra mileage season from 2 years ago (where I was doing regularly 15-16 miles with one big 28 mile day); but I also wasn’t at my low from last year without the exoskeleton where my ski days were more like 6-8 miles on the best days but also had several 3-4 mile days with disproportionately more effort. Instead, I was able to clock several 10-12 mile days as my “low” end mileage and had many 13-15 mile days throughout the season. Woohoo!

My specific experiences with Hypershell as a brand

As I wrote before, I bought my exoskeleton for $1,199. I try to make that very clear because I was then chosen to try the Ultra version for free (which I wrote about here). They didn’t try to influence what I said about it, and you’ll see from my writeup that I actually think the Pro model I originally got was the best value, and still prefer that over the Ultra. The Ultra is supposed to be reengineered such that it is more efficient, but from my experience, it feels like it has just minimized power output in order to get a longer ‘range’ from the same amount of battery. There’s a chance I haven’t put it through its paces enough, and this may be unique to my muscle situation (I tend to run mine on higher settings than most people?), so of course this is based only on my experience, but between a $1200 price point and a $2000 price point, I doubt most people would get $800 benefit more from the Ultra over a Pro (ditto the Carbon, as I wrote about originally). That being said, in May 2026 they came out with several new versions, confusingly overlapping in names – there’s another Pro (now called the Pro S?) and other models with S in the name. I haven’t done a lot of reading into them and comparing specs, especially the new ones against the old models, but I wouldn’t be surprised if there are similar tradeoffs of power output versus range across different models again.

Anyway, the point of this section is to talk about my lived experience with it. Mine broke in November 2025 (I bought it in July 2025). Ack. The back bar – which you adjust the ‘hip width’ setting with – broke suddenly and unexpectedly while I was out on my (thankfully near to home) flat paved walking trail. I was trying a run interval, which I had done before, and I was hearing an odd noise. I stopped after 15 seconds and turned it off and back on, inspected the motors on both sides, but didn’t see anything wrong with it. When I started my next run interval a minute or two later, the bar broke in the back and it was clear the right side leg wasn’t working right. But because I had it on hyper (red) mode at high power, and it didn’t detect that it was broken since it was still strapped to my leg, the motor kept moving and trying to drive the leg. It was essentially loose and flailing around on my right side so it was hard to grab and press the button to power it down. I had to unstrap it from my leg and avoid getting whacked with it flailing around until after a second or two, the “it’s not strapped” auto-stop detection worked, and it stopped. Phew.

Hypershell as a company was great about it, though. I emailed the customer service account and included pictures and they said “yup, it’s broken, and we’ll replace it”. (The warranty is for a year, and this was ~4 months into my using it, probably around 250 miles of usage at that point). They asked a couple of questions about the box I would use to ship it back, the weight, etc, then sent me a free shipping label. We packed it up, dropped it off, and sent it back. Once they received it and verified it was broken like they said, they sent me a replacement. This did take about 3 weeks in total, in part because I was traveling for a week by the time they got me the label and I had to wait to ship it, plus it was over a holiday. Luckily, I still had the Ultra model and was able to use that in the meantime, but if I hadn’t had another one, I would have been without an exoskeleton for ~3 weeks. (For me, that’s meaningful time without, given how I use it to facilitate my preferred activity levels). The new one arrived and I started using it again, and it worked without issue from there.

I have seen some complaints online about slow customer service responses, and for other communication processes have also seen intermittent speed, but for straightforward “hey this is broken, how do I get a replacement?” it was on par with decent brand customer service and I have no complaints in that regard. If you were on the fence with that as a reason not to consider getting one – I wouldn’t let that stop you from deciding to get one. They do hold to their warranty.

(I will say, it did make me a bit nervous that mine broke (and in such a weird way at that back bar point) so ‘soon’ in – after only 250 miles – because they had somewhere online an estimate of standard lifetime being well over 5x that point. I had asked them if this was a common failure point or if I was doing anything wrong that I should do differently with my next one, but I didn’t get any good feedback on that. I do wonder if, because I use a wider hip setting, it may generate more force and torque on the bar, plus my higher mileage and higher power settings, than their testers have used in the past. But I don’t know if it is that or just a fluke.)

I will clarify that I’ve put over 100 miles on the Ultra, and it didn’t break. I passed the same mileage point with my replacement unit, and it also hasn’t broken. So I don’t think these units just break around 250 miles for no reason; that contextual data would indicate my broken one was likely a fluke.

Range anxiety no more (return of the mileage, thanks to additional batteries)

My original Hypershell x Pro model that I bought came with 2 batteries. I started using both batteries for hiking last year and managed to run through both batteries on a hike or two. It did cause some ‘range anxiety’ and I would limit how much power I ran it on so that I wouldn’t run out before the end of the hike. You use less power going downhill, but because I prefer mine on ‘walking’ mode for downhills so I still get assistance lifting my leg up as I step, I wanted enough power to get me all the way back to the car. Once or twice on bigger hikes, I managed to run out of battery over half a mile from the car, so I began to pay much closer attention to how much power I used on the outbound and uphill part of the hike to try to better manage having enough battery to finish the hike with at least some low assist.

When I was given access to the Ultra, it came with 2 batteries also, and the batteries are also interchangeable. This meant that I had 4 batteries I could use if I wanted to carry the 3 spares. I did immediately start carrying 2 spares on every hike or ski excursion because I had previously fully used 2 several times, so it was nice to have 3 total (one on device plus two spares), and I regularly would switch and be using the third one as we completed the activity. I had actually been on the fence about buying more batteries anyway, to give me more range (and more miles), when I ended up with more as a result of the Ultra. Also, when mine broke and I returned it, they didn’t have me send back the batteries (which are subject to air shipment restrictions), but the new one they shipped did come with 2 more batteries. So now I had…6. Wow. Even with my mileage tendencies, I have never managed an activity to use more than 4 batteries, even running the exoskeleton on higher power intensities. I have been on the 4th one for some 10-12 mile hikes that had 3-4,000 feet of elevation gain by the time we finished (because I also use it on a low ‘walk’ setting for downhill so I still get assist lifting my leg with every step), but haven’t even managed to fully go through all 4 and need a 5th.

The tradeoff is that you have to carry these batteries – I usually carry 2 spares in my pack and if I want a 4th, have Scott carry the third spare in his backpack. But given how the exoskeleton assists me (and prevents multi-day recovery issues as a result of using it with the power settings I need), it’s worth carrying that extra weight and rotating the batteries. When it dies or is about to run down, it’s very easy to stop, have Scott do the swap (battery is on the backside under that adjustable bar, so it’s faster for him to unclip a battery, grab and swap the other one from my pack, then I turn it back on while he zips up my pack), and carry on. It takes 30-60 seconds to do a full swap. Whereas when I do the swap, I have to stop, put the device on standby, fully take it off and set it on the ground, take my pack off and get the battery out, pick up the exoskeleton and swap the battery, put the battery back in my pack, the pack back on, and the exoskeleton back on. I’ve done it plenty of times – especially when I’m off cross country skiing by myself – but it’s a lot faster when hiking with someone to get them to do it. But for me and how I use the exoskeleton and why, it’s worth the extra weight of additional batteries. People who don’t use as high of power settings will not need as much battery, and this may be where the ‘efficiency’ of the Ultra and possibly the new models just released (the x S series) might benefit people who need lower power output.

What’s next? What are my future exoskeleton choices?

My warranty is now over, so I expect at some point in the next 6 months my device is likely to break (because of my high usage patterns) and because it’s out of warranty, I’ll need to decide what to get next. I am slightly disappointed that these don’t hold up to the full predicted lifetime mileage…but…a little less so now that I see how much value I get out of it and again, the fact that they do stick to their full year of warranty if it does break. A solid year of my high-mileage use under the warranty is really decent value for me. I also now have plenty of my data to understand the power settings vs battery vs time expectations and have a little better way to contextualize against the “max range” and “max battery time” metrics the company provides for how to translate that to my experience (with likely higher power settings).

I actually don’t know yet what I would buy next, though. If there were no other options, I would definitely get another Hypershell brand exoskeleton, because I am very happy with my Pro (and how they handle the warranty). I’m just not sure which one because I haven’t studied and compared the new models and the price points to the existing line. But…there are other brands coming to market. There is one coming via Kickstarter (to start) that has a hip + knee option that is interesting. I don’t know that I “need” a knee-based motor, but I also don’t know without trying it that it wouldn’t be beneficial. In fact, I have a weak hypothesis that it would help me overall get more mileage out of lower power settings, because it would better help compensate across all my muscle motions (not just the hip), so I maybe could go farther with less battery requirement. Maybe. I won’t know unless I get to try it, and I don’t know if I would commit the money to buying it at full price without knowing if it would be more beneficial for my situation. (It’s unclear after the Kickstarter when it would be available for general purchase). They also have the option to buy it without the knee motor, but again, I don’t know if it would work better than Hypershell’s version, in terms of the physical structure, battery life, power output, ability to get data out of the app to help guide my usage, etc. I’d be very interested in testing it (and A/B testing with and without the knee component!) if that was an option, but without that ability to test, I don’t have a good prediction right now for what I’ll choose for my next one.

A powered exoskeleton is an instrument of freedom: thoughts after 1,000 miles. A blog post by Dana M. Lewis on DIYPS.orgAnd…there are likely more coming. I’ve seen two or three others advertising online. It’s an exciting time for those of us who want or need leg-based or lower-body exoskeletons. If you haven’t read my other post, do read it – it seems like exoskeletons are benefitting a lot of people for a lot of reasons and I get a lot of feedback that it’s helpful to hear about my experiences so people can consider it for their own context (even though my situation is very unique).