redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Apr. 24th, 2023 02:48 pm)
I have just been reminded that I am capable of writing down a doctor's appointment for the wrong day, remembering the wrong date, and answering an automated confirmation email without noticing. Fortunately, both the actual appointment and the date I wrote down are later in the week, so I haven't missed anything or had to scramble. Also fortunately, nothing else needs to be rearranged.

Weirdly, the reason I checked this was an automated MyChart message about a test result popping up on my phone,. For some reason, that had me thinking "oh shit I'm supposed to be doing telemedicine now!" I looked at the list of future visits on MyChart, and saw that I have telemedicine appointments in May and July, but also an in-person on Thursday afternoon (not Wednesday).

The message was about more results from the blood draw before the Ocrevus infusion, showing that I had effectively no B cells before the treatment. In my specific case, that's not a problem, it's what we're aiming for to control the MS. (MyChart flagged that result as "low," of course.)
My Ocrevus infusion went smoothly. I got to the hospital half an hour early, partly because I woke up a bit earlier than the already early time I had set my alarm. So, I also left the house a little earlier than planned, then made very good transit connections.

This time, I asked the nurse to use my right arm for the IV, but she had trouble finding a good vein, and asked a more experienced person to set up the IV. When my right right forearm didn't work either, I told her to use the left arm, which did. She suggested trying my right hand, but there are just too many nerves there.

Since I've had these infusions several times before without problems, she ran the IV drip faster than usual. I was done with the infusion at about noon, meaning I got to leave at 1:00. I brought lunch, leftover vegetable frittata, which I ate while sitting around for them to low-key monitor me (meaning there was nobody in the room with me, but plenty of staff nearby where they would have head me if I'd called for help.

When I was done at the hospital, I took the bus a few stops, then bought a cup of tea from Flour, and drank it sitting on an Adirondack chair in Harvard Square. The chair has a plaque saying it was paid for jointly by the city of Cambridge and a group of Harvard Square businesses.

Once caffeinated, I took a bus to Penzey's in Arlington and restocked our spices. I'm a little low on whole green cardamom pods, but those are expensive enough that I'm going to wait and see if Bill Penzey decides to offer a discount on those specifically. The cashier doesn't think they've had a sale on cardamon specifically, but they have had sales on things like everything Mexican, because Trump was slandering Mexicans; a Russian seasoning blend to make the point that the problem is the Russian government, not ordinary Russians; and everything starting with F or N (because of right-wing hate speech using specific nasty slurs; so maybe Bill Penzey will decide to discount everything starting with C. More likely, I'll put cardamom on the list when I'm down to a couple of weeks' supply -- I don't use it that fast, but it was worth looking at the current price as long as I was there.
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Oct. 20th, 2022 04:04 pm)
I had the twice-a-year Ocrevus infusion today.

Almost everything went well, although that the first vein the phlebotomist tried didn't work well. She tried using a vein in my left arm, at my suggestion, and when the first attempt on that side left a small bruise, she used a vein in the right arm. I suspected that would happen -- I have better veins (for IVs and blood draws) in that arm, probably because I'm right-handed, and because I'm right-handed I didn't want to worry about moving that arm.

I was thinking of going to Watertown or Belmont after the infusion and buy olives and pita bread and such, but by the time I'd finished with the infusion and the hour waiting period in case of side effects, I didn't want to deal with shopping and decisions like which olives to get. Instead, I took the bus a couple of stops and went to Darwin's for a cup of chai, which I drank on a bench outside the cafe. I got up early this morning and left the house at about 7:30, getting to Mt. Auburn Hospital a few minutes before my 8:30 appointment. Between that and running around yesterday and Monday to do occupational therapy and have a blood draw, I am not at all surprised that I just wanted to go home.

I will be back at Mt. Auburn Hospital Monday, for another dose of Evusheld, and I might get olives etc. then.
I got an automated message via MyChart yesterday, saying "you have a new test result". I logged on, and it was a "miscellaneous lab test," with lines for "result" and "test name," and columns for "Component, Your Value, Reference Range, Flag" -- all entirely blank.

I looked at the date and followed up with my neurologist, who replied, saying "This is the B-cell measurement and it came back zero which is the goal while you take ocrevus." So, good I guess, but it's hard to be entirely cheerful about the way the medication, doing what we need it to, is squelching my immune system. (And three years ago I would have shrugged at this.)
I have heard back from my neurologist: yes, the Ocrevus makes me more vulnerable to covid (and probably other infections), but the effect kicks in about two weeks after the infusion.

Between that and the half-life of the monoclonal antibodies, my risk yesterday was as low as it's likely to get anytime soon, whether or not the case numbers go up because of holiday gatherings, unmasked airplane and transit passengers, or for any other reasons.

Tomorrow's plan is to stay home, zoom with my mother in the afternoon, and not do much else. Saturday I will be seeing [personal profile] adrian_turtle.

I should also think about other things that have to be in person, and that I could plausibly do in the next two weeks. (
I had my twice-a-year Ocrevus infusion this morning. They took blood to run some tests my neurologist wanted: the MtAuburn labs and MyChart are efficient. They took the blood around 9:00, and the first results were available at 9:45. My Vitamin D levels are excellent! 71.1 ng/mL, with the "good" range being 30-100. My neurologist was aiming to get it up from about 35 to 50 because they think there's a connection between Vitamin D and MS. Note: a couple of years ago the "reference range" was being given as 20-100; if you were at the low end of normal by that standard, they may now consider you to be deficient in vitamin D even if the actual number hasn't changed.

Also, the Transit app is now asking: do you think the bus stop is accessible? how crowded is your bus? did the bus arrive when you expected, or significantly early or late? and whether the other passengers are masking. For my bus home, the answers were yes, accessible; somewhat crowded; about when I expected (for the revised arrival time, but there's no room to be that specific); almost everyone was masking. (I took a Lyft to the hospital, because an 8:30 appointment would have put me pn a rush hour bus, and with little slack if a bu trips was cancelled.) I wore my boat-style N95 mask for about several hours, removing and restoring it a few times to eat, and twice to take pills. I continue to be pleased with these masks.
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Mar. 10th, 2022 05:09 pm)
Before I forget: yes, the Ocrevus interferes with other vaccines. What this means in practice is that if I ever have the sort of injury where they ask when you last had a tetanus vaccine, my answer will be "I'd better have one now."

Also, after talking to my neurologist this afternoon, I decided I do want the Evushield preventive monoclonal antibodies, so he has placed that order and the hospital will call me when I can come in. (That will be in the area the hospital calls the walk-in clinic, even though I need an appointment for this.) They're supposed to be good for six months. He thinks that whether a second dose will be approved depends on whether the FDA thinks this is a reasonable thing for the government to be spending money on, and that depends on vaccination rates and whether there's another variant like delta or omicron driving up case rates.

The Evushield is two intramuscular injections, one in each buttock; having been on Avonex for several years, my reaction was "that's easy" because I won't have to self-inject.
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Feb. 26th, 2022 09:06 am)
Pulling this out of comments: [personal profile] voidampersand found a small study showing good T cell response in patients being treated with Ocrevus, like me:

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciab954/6430423

The authors note the small study size, and that they were unable to correlate T cell levels with clinical protection, but this is still good news.
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Oct. 21st, 2021 02:34 pm)
I went to Mount Auburn Hospital, had the Ocrevus infusion, and came straight home. It was significantly faster than the last couple of times, partly because they're experimenting with running the drug through the IV faster, and partly because I lucked into a quiet morning, so I didn't spend a lot of time waiting for the nurse to be available to change what was in the IV, or for the pharmacist to mix the IV. (IV benadryl, dexamethasone, and Pepcid, and 2x325 Tylenol pills.)

I'm not surprised that she asked if I had the lisinopril with me, given what I've told them about how I take it; I was surprised that she remembered that I ordered a salad for lunch six months ago, and asked if I wanted the same thing this time.

Now I am home, and have had another cup of tea.
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