Praise then darkness, and creation unfinished

I injected the second dose of Kesimpta an hour ago, sitting in my living room. I asked Cattitude and Adrian to be there and observe, so they could do the injection in future weeks. This turned out to be a good thing, because I had misremembered what the nurse showed me, and was trying to press a non-existent button on the self-injecting device with my thumb. The way it actually works is, hold the thing firmly, press against your skin, and the device senses the pressure and does the injection.

I now need to buy a sharps container, one large enough to hold the self-injecting pens. (For the moment, I put the used injector back in the box it came in.)

Next Wednesday will be the third dose ("week 2"), then two weeks after that is "week 4" (and the fourth dose). I just called the pharmacy, and they told me I can order the refill a week from tomorrow.

ETA: I just bought a sharps container at CVS; the pharmacist said it's the only one they stock, and yes it's big enough for the Kesimpta injectors. I forgot to ask him whether they take sharps containers back for disposal; on the other hand, he forgot to charge me for the container, which I only noticed when I got home and looked at the receipt.

Someone from my neurologist's office called this morning, to discuss my new MS drug prescription (Kesimpta). This was mostly things like, the next step is that I will hear from a specialty pharmacy, and what I should do if they are asking for a large copay. There are ways to get the drug company to cover all or most of that, but I'll have to ask, and I don't know how complicated the process is. The woman I spoke to said that the doctor's office doesn't know what my copay will be, because the insurance companies and pharmacies won't give them that information, they'll only tell the patient.

The drug will be shipped to my home, with ice packs to keep it cool, because it needs refrigeration. I'll be getting the first three doses (weeks 0, 1, and 2) at once, and then monthly doses, shipped one at a time. In this case they do mean monthly, rather than every four weeks, which may be easier to keep track of.

This afternoon, I filled out and submitted the "FinCEN" report about my Canadian bank account for 2023. I'd already collected the data, so this was a matter of doing a couple of calculations, then going to the appropriate website, and entering things like my name, address, and social security number, plus the information about the bank account (account number and maximum balance during the calendar year).

I just got off the phone with the nurse practitioner who is covering for Dr. Abdelrazek. She thinks the reason the PT place yesterday said they don't do that is that the doctor put "for MS" in the referral, so she is writing a new referral that just says "balance therapy," and sending it to an office across the street from Mt. Auburn Cemetery (same building as my dermatologist).

She told me to either call the office or send a MyChart message to her and/or Dr. Abdelrazek if I don't hear from either the PT office or her office by next week.

She then told me about some blood test results that I'd gotten via MyChart, on blood taken immediately before my last Ocrevus infusion. Three immunoglobulin numbers. Two were in the green "normal" range. and the immunoglobulin M is a little low. But the difference between this 45 and the 47 from six months ago probably doesn't mean anything. Monitor, but as long as I'm not getting many infections don't need to change anything. (The "normal" range on this one starts at 50.)

Also, I picked up my new steroid inhaler about an hour ago. The instructions are complicated enough, and different enough from how I use the albuterol, that I am going to reread them, and also get cattitude to read them over, before I do anything. The instructions are to use it twice a day, morning and evening; 4:00 is not "evening," and I will probably use the first dose after dinner tonight.

For about three days, I was worried about whether I would be able to get my gabapentin (generic for neurontin) prescription refilled on time. This morning, I talked to a neurologist, who called it in, at the dosage I need, and the pills are now safely in my apartment.

( cut for length )

I saw my neurologist (Dr. AbdelRazek) today for my semi-annual checkup, and one of the things we discussed was vaccines. He thinks I should get most vaccines, because T cells exist, but doesn't think I should bother with the flu vaccine, because that one isn't very effective in people who aren't taking medication that knocks out their B cells. I didn't ask about the omicron booster specifically, because I didn't think of it: I was asking about a second dose of Evusheld, and whether there's an MS medication that is as effective as the one I'm on now, and doesn't interfere with vaccines. [There is one, Tysabri, which I have already taken as many doses of as I can safely have in my lifetime.]

I told him I'd been tested for anti-covid T cells, and the test found that I do have some, and he was surprised and interested, because he hadn't heard about that test. I used MyChart to send him a link to the faq page for that test, and he thanked me.

He is going to look into a second dose of Evusheld; as far as he knows, the FDA emergency use authorization for that is for only one dose per patient.

I asked the doctor to write a new gabapentin prescription, for the dose I'm actually taking; he did, and Capsule will be delivering it this evening. I told him that yes, at that dosage it works very well, meaning I only have leg spasms occasionally and they are much milder than at the lower dosage.

He says I am clinically stable, based partly on the low-tech neurology, things like moving pegs in and out of slots, walking 25 feet, and having a light shined in my eyes, and partly on my answers to his questions. He is putting in an order for an MRI, head only, no contrast; Mt. Auburn radiology will contact me to schedule that, and if I don't hear from him within a week after the MRI, that means it's good news. My next MRI will be head, cervical spine, and thoracic spine, probably with contrast.

He think my previous doctor's diagnosis of pseudo-bulbar affect was correct, even though I didn't respond to the drug that's commonly used for that (Nudexa). He said the mechanism of action of mirtazapine, the antidepressant Dr. Segal prescribed along with the bubropion, is similar to Nudexa's. This doesn't seem to have any clinical relevance--the treatment I'm on is working pretty well--but I'm noting it here anyway.

[as usual, this is partly for my later reference]

This feels a bit like "everything coming together, but these are unrelated things. So far today I have gotten:

• email from our contact at the German embassy, saying that once she receives my brother's application for naturalization she will send them both to Berlin. (If I don't hear from him in a couple of days, I may send a quick note saying "I think you can copy almost all of my application, I'd be grateful if you dealt with this soon."
• two emails from the management of the place we plan to move into, one "here's the countersigned lease, save a copy" and one about giving them bank information.
• a phone call from someone who identified herself as "one of the nurses at the infusion center at Mt. Auburn Hospital," which was not about the Ocrevus, it was to make an appointment for me to have the Evushield preventive monoclonal antibodies. I have an appointment at 10 a.m. tomorrow. That's 10 a.m. arrival. When I tell them I'm there, the pharmacist will starts preparing my prescription, which she said would take 15-20 minutes. I said "I'll bring a book" and then she told me that after I have the infusion, I have to stay there for an hour and be monitored for possible side effects. After hearing that, I asked10:00 instead of 10:30, so I can be home for lunch.

I realized, about half an hour after making the appointment for the infusion, that I seemed to be running out of executive function, which I suspect is due to stress, given the time of day and that I didn't forget my morning pills.

I do not have to go to Davis Square tomorrow to see my doctor and get a refill on the Ritalin prescription. They called this morning and asked if I would like a phone consultation and then she would mail the prescriptions. I said "yes, please." I had been planning to call and confirm that appointment, just in case, but they called me first.

Normally, seeing Carmen in person would be better because I could also have followed up on my wrist pain and asked about the second dose of the hepatitis B vaccine. Right now, not having to take two buses to get there, plus time in the waiting room, is clearly better. It didn't occur to me to ask for a phone consult, because usually she wouldn't be allowed to prescribe a controlled substance this way. But these are not normal times.

I'm still going to keep a close eye on the remaining pills until I get the refill, but I have enough to get me to the weekend.

I saw the allergist this morning. He asked me a bunch of questions, including wanting me to describe the rash and about medications other than the antibiotics I was wondering about, and decided it did make sense to test for an allergy to penicillin.

So he took the residents* off into another room, where he either showed them diluting the penicillin or had one of them do it. Then I got pricked (they say "scratched") five times, and sent to wait for 20 minutes with my book. No reaction to anything except the histamine control. This is good, this what we want.

To confirm, he then gave me 2 amoxicillin capsules, totaling 500 mg, and had me sit in the waiting room a while longer. I had no obvious reaction, and he also looked at the areas where I had broken out last winter, i.e., chest, neck, and calves.

So I am not allergic to penicillin or amoxicillin, and can safely be given that family of antibiotics. However, as my GP warned me, there is no test for Bactrim allergy. There is also no test for a cephalosporin allergy as such. So:

I am to avoid Bactrim. If possible, avoid cephalosporins, and if a doctor thinks I need one, contact the allergist. Ditto for sulfa drugs other than Bactrim. In either case, he would probably want me to come in, and take the first dose in his office just in case. Sulfanilamides are a large family, including a number of things other than antibiotics, and some of those are more likely to cross-react than others. (One of the residents mentioned Lasix as one that would probably be okay, if I ever need it.) Taking the first dose in his office would be a precaution against anaphylactic shock, the thing allergists worry about most. It wouldn't do anything for the rash a month after taking the drug, or even a week into a ten-day course of medication.

The above is more or less what I was hoping for: the best outcome given the previous reactions and the current state of medical testing. I also verified that tetracycline is not a sulfa drug, so I can still use that. Just curious.

*I assume they were residents, because they were fairly young, and his office is in a teaching hospital. Not med students, because he introduced each of them as Dr. $name, not Ms. $name.

My doctor confirmed my guess that I have bronchitis. She prescribed an antibiotic, which I expected, and an Albuterol inhaler, which I didn't. Also some cough syrup (she said it would be good for sleep, so I'm not trying it until bedtime.

If I don't feel better by Wednesday, I'm supposed to go back Thursday.

I asked about a flu shot, and she said I should come back next week for that, and call first to make sure they've gotten another supply and verify their hours, but I won't need an actual appointment.