Pardon any typos - I tapped this out on my phone, since my laptop is in the shop!
Where were we? Well, it’s been almost a month since I started the IVIG loading dose. I had the five day loading dose at the start of June, and then I had my first follow up infusion last week. Before that, I also had an emergency appointment with my neurologist because of the aseptic meningitis lingering as well as my still having this strange pressure in the side of my head. The day after I saw her, I also had a 4th ER trip (TMI coming up!) because I’d been having so much diarrhea that I started pooping blood - luckily (?) it seems like it was probably a hemorrhoid bursting, so now I have one more nagging thing going on. I’ve also added to my long list of medical things going this summer: a CT to check the blood vessels in my head, and a visit to the GI doctor. Wheee.
While I still had the lingering meningitis when I went for my infusion last week, with the premeds and my post infusion med regimen, it went okay. I got a bunch of post-IVIG flu hangover, and a pretty intense headache in the days after it, but I was able to manage it all at home, and didn’t even end up taking any extra steroids or stronger painkillers, though I came close yesterday. I’d forgotten to set my alarm for my middle of the night Benadryl dose, and woke up an hour and a half after it was due with a headache and diarrhea. It took me a full 24 hours back on my more intensive post-IVIG med regimen to get it to calm back down. Unfortunately the more intensive meds give me more diarrhea and make me dehydrated. So today my blood pressure has been in the gutter and I’m just generally feeling really run down.
All told, June was one of, if not the worst month of my life, and it just feels never ending right now. All I can eat safely is rice crackers and dry rice cereal, and there was a week early on where even that was going straight through me, so I’ve lost a bunch of weight. And I’m just feeling super weak and depleted. And all the Benadryl I’ve been taking has made my dry mouth, nose, and eyes way worse than usual (meaning nosebleeds, thrush, and waking up with my eyelids stuck to my eyes no matter how many gels and drops I use...) But I’m taking my potassium supplements (thank goodness for that), and vitamins, and trying to stay hydrated, and hang in there.
Having treatment every two weeks really doesn’t leave much room for recovery before the next one comes up, so the summer (I’m on an every two weeks schedule till at least the end of August) is looking like a real grind. The reality of getting a diagnosis and needing a pretty intensive treatment is something I’m still only beginning to adjust to. It’s a mental challenge as much as anything, when embarking on treatment means getting sicker, and not even knowing if it’s going to pay off in the long run or only leave me more debilitated. But I have to keep going and find out.
And there is a bright side - I’m already having some improvement from this first month:
- My swallowing - the part that happens in the larynx - is working better. This was one of the worst and most severe declines I had over the winter, and I’m very pleasantly surprised it was one of the first improvements. (My esophagus motility is still sluggish.)
- Relatedly, the voice loss and the pain in the left side of my larynx which has been worsening for about a decade is also a lot better. I’ve been able to talk far more than I could before, without losing my voice or getting a lot of pain in my throat (and then being more susceptible to hair trigger choking on food and coughing fits).
- While my blood pressure is still really low and I still have tachycardia (fast heart rate) whenever I stand, I have been having far less orthostatic intolerance symptoms (dizziness, sweating, starting to black out when I stand still for more than a couple minutes). I basically feel now how I felt on the vasopressor med (Midodrine) before the loading dose, but am not taking the Midodrine right now because of the head pressure - I may go back on it after I get the head CT, but we’ll see.
- I feel like my stomach motility might be a touch better, but my intestines are a worse mess than usual, so I haven’t really been able to test this out. I also still have yet to try the motility med Domperidone, as I’ve been struggling a bit with my potassium levels, and want to get them really stable before I take the Domperidone (since it can cause heart arrhythmia, and is more dangerous if you have low potassium, since that can also cause arrhythmia).
- My hands, neck, SI joint, ribs, and ear cartilage still feel a bit better than before, though not as good as when I was on the higher steroid dose.
- For a couple weeks when I was on the higher steroid dose, I also had almost no hives or dermatographia. But that’s pretty much back to how it was before since going off the steroids.
- The vestibular problems (tinnitus, sound sensitivity aka. “hyperacuity”, dizziness, and occasional true vertigo) in my right ear, which I’ve had for over a decade are probably 80% better. Another flipping miracle. The bonus from this is I’ve been way less motion sick when getting pushed in Wheelie (my rollator/wheelchair), and in the car - so great since we’ve been making all these trips back and forth to the hospital.
- While I was on the steroids, my dodgy lung (diagnosis TBD) also felt a lot better, and I could breathe way better and more deeply than usual. This has reverted a fair bit since tapering off the steroids though.
- Oh, and (TMI again!) the intense vaginal itching I always get for a few days before my period since this autoimmune stuff started seemed to be a lot better last period. Keen to see if that was the steroids and Benadryl or if it’s a more lasting improvement. I’m not 100% sure if this has been from the Sjogren’s mucus membrane dryness, or some other autoimmune thing, but I’ll be thrilled to see it go away!
The things that I haven’t felt much improvement in yet are:
- My digestion and food tolerance.My eyes’ sensitivity to light (my pupils don’t constrict properly, so bright light hurts them and makes my vision blurry).
- The tachycardia I get when standing and my low blood pressure (this is actually worse than usual right now because I’ve been so sick).
- My nighttime reflux which is quite severe and I think at least part of why my lung is messed up.
- The dry eyes, nose, and mouth - but Benadryl is also a strong anticholinergic, so it’s hard to tell.
- The Achilles tendinitis I’ve had since last summer was a little better on the steroids but is still super bothersome now that I’m off them.
- Finally, I’m not sure if the muscle weakness I developed over the winter is still happening. I’ve had to take it super easy because of the meningitis and head pressure, which get worse if I try and do much physically. But I really hope that has started to improve too!
There you have it - month one down. I truly hope the worst is behind me, but IVIG seems to be quite variable for different people, and unpredictable even at the best of times. It’s become clear this is going to be a long and challenging process, and might take up a lot of my time and energy for the foreseeable future. But it’s what needs to be done, because the alternative - not treating the illness and having progressive autonomic failure - is not an option.
I know I’ve said it before, but I’m so freaking grateful to have a supportive partner in Bruno through all of this. I don’t know how I would have gotten through this without him, but it would have been really freaking hard. He’s made countless runs to the pharmacy to get me more meds, driven me to the hospital what feels like a hundred times, kept us fed and living in a respectably clean home, and has been helping me wash my hair because I’ve been too weak to do it myself. And he’s seen things this past month that I really never would have wanted him to see, and kept loving me through it all. I know it’s been a hard month on him too, and haven’t taken all his help for granted for a second.
I’m going to try to keep writing monthly updates on how treatment is going, so I can document progress and the things that come up - both for myself and for anyone else who might find my blog looking for info on IVIG or autoimmune dysautonomia. Alrighty, that’s it for today! Onwards...