The advice the GI doctor gave me on Monday seems to have done the job: my gut has been behaving since the visit, which is five days so far:

The doctor told me was to take the imodium (anti-diarrheal) twice a day whether or not I have symptoms, and start taking psyllium (metamucil). I was surprised, because psyllium is generally referred to a laxative; I suspect that's why Carmen didn't think of it. Assuming I'm still fine on Monday, I'll be sending her a MyChart message

I've taken one/day for five days, which seems to be enough. The package instructions are not to take it within two hours before or after other medication, because it can interfere with absorbtion. I'm already taking other medication on something resembling a schedule, which means this one has to be at or a little after 6 o'clock, unless I want to fiddle with the timing on something else. The schedule includes "right after I wake up" and "after breakfast." )
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Oct. 1st, 2024 06:54 pm)
By dinnertime yesterday it felt like I had overdone things a bit, so I am trying to take things a little easier today. That mostly seems to mean staying home rather than going for even a short walk, and using the cane when I remember.

However, I did some standing-up PT things, including one (shrugs) that I had modified to do while seated when the leg pain was bad.

I heard back from Carmen today, and she said that the "wash-out period" for the steroids is five days, so I should avoid NSAIDs until the weekend, and not restart the Yuvavem until them. I'd already taken a naproxen this morning before I heard from her, but made a note not to take any more until at least Saturday.

I now have three prescriptions waiting at CVS, and may try picking them up myself if I can go in the morning (to avoid crowds), or I may get Cattitude to pick them up. (Adrian is doing a lot of High Holidays prep, both baking and other cooking, and organizing things at/for Havurah Shalom, so I'd rather not ask her to run extra errands.

Unrelated: I have now written four more get-out-the-vote postcards, for a Michigan Congressional race, and want to get those in the mail tomorrow. I don't want to strain myself by doing a lot of these (or anything else that has to be hand-written), but even four postcards is better than zero.
I just talked to Carmen. Based on the signs of inflammation in my bloodwork, she is prescribing a burst of steroids--five days of pills. Carmen said they have figured out they don't need to taper patients down from a short course of those pills.

Also, my gum has been painfully tender and I think a little swollen for the last couple of days. I mentioned that, and we decided that I should also have an antibiotic, because with my current MS drug, there are no antibodies in my bloodstream. So, I will take both sets of pills, and check back with Carmen next week, probably on Monday.

I had an easier time getting to sleep for the last couple of nights, because it's easier to find a non-painful position to lie down in. That is a good sign, but this is not going away quickly, and even with the cane, walking or standing for long hurts, so we definitely need to treat this, not wait for it to get better on its own.

On Carmen's advice, I just called the nurse at the MS clinic, and left a message briefly describing the situation, saying Carmen wants me to loop them in, and offering to send them the test results.

ETA: I now have the prescriptions, and having read the instructions, I will be starting them tomorrow morning: the doxycycline is twice the first day, then once daily, and the prednisone is daily, "before 9 a.m." but to be taken with food.

Carmen said the doxycycline "works best on an empty stomach, and either an hour before, or two hours after eating and other medications." I already have one medication I take first thing in the morning, and two others that I take in the morning, with food. Given that sleep matters, and that I have to leave here a little after ten tomorrow to see my pulmonologist, I may take the doxycycline and ritalin at the same time, and the prednisone around 9:30.
I just saw my new neurologist. I like him (as does Adrian, who came with me). Rather than arrange for me to have the twice-a-year Ocrevus infusions at his clinic, we're planning to switch to a related drug that doesn't involve infusions but monthly subcutaneous injections, usually done in the patient's home, and that doesn't stomp as hard on the parts of the immune system we want to keep. _That_ is the main reason I want to switch, not to avoid the infusions. Even better, Dr. Sloane says that the Ocrevus doesn't wipe out as much of the immune system as Dr AbdelRazek led me to believe. Vaccines are still useful, if not as useful as for someone who isn't on immune-suppressing drugs, and I do have antibodies in my bloodstream, though, again, not as many as without the Ocrevus.

It might be possible for the three of us to relax our covid precautions slightly, though I am making no decisions before talking to Dr. Koster tomorrow.

The new drug is called Kesimpta.

Also: Dr Sloane asked if I'd ever had a sleep study: it turns out that a lot of MS patients also have sleep apnea. When I said I hadn't, he offered to refer me for one, and I said I would think about it, after I see the pulmonologist tomorrow.

And apparently covid tests that use a nasal swab have a higher false positive rate in people on Ocrevus than in the population as a whole.

Dr Sloane also asked whether I was taking the gabapentin for pain, which suggests that he disagrees with Dr. AbdelRazek about whether my knee pain is neurological. I explained that I had originally been prescribed it for pain that my first neurologist thought was neurological, but that by the time Dr. AbdelRazek said MS doesn't do that, I'd discovered that I needed it in order to sleep.
My mood and focus are both up and down unpredictably these days, significantly moreso than pre-pandemic*.

This morning I did some proofreading while [personal profile] cattitude was still asleep, and rescheduled a grocery delivery for this coming Thursday instead of Sunday: and a couple of hours later playing Scrabble seemed too mentally difficult. (Between the hand brace and the MS, I am going to drop tiles occasionally, and don't let this stop me from playing.)

We went for a walk this afternoon, and successfully completed a Scrabble game. I idled for a bit, cut up more cardboard for recycling, and even did another half hour of proofreading.

I have no idea what we will do for dinner, though it's likely to involve leftover chicken.

*Putting in that comparison, I feel like noting that it's not as bad as before we increased my dosage of one antidepressant and started me on a second. I am *very* glad we got that sorted out, at least mostly, when the only difficulty in seeing a psychiatrist was finding room in her schedule.
The French minister of health is advising people who have, or think they have, coronavirus to avoid anti-inflammatory drugs because they can reduce the body's immune response. So, if you need/want to reduce a fever, he advises paracetemol (=acetominophen = Tylenol). What the article doesn't mention is that it's often better not to reduce a relatively mild fever, because the fever is part of how the body fights infections.

I tend to be a bit nervous about acetominophen, because it's relatively easy to take more than is safe while thinking you're following the package instructions. So, the standard warnings: watch out for pills with more than one active ingredient, and don't mix acetominophen and alcohol. And, if you're like me, keep a record of how much you take and when. And of course consult your doctor, pharmacist, or other qualified health care provider for advice.
I saw Dr. Segal this morning, and told her that yes, I want to add a second antidepressant. She couldn't remember, and hadn't written down, which atypical antidepressant she had been thinking of the last time I saw her, so we discussed options starting with what I'm on now (welbutrin). After considering which antidepressants I've tried before, and likeliest side effects of the different drugs we were considering, we settled on mirtazepine, to be taken late in the day because one of the commonest side effects is sedation. ("Side effect" is an interesting term; the pharmacist asked if I was taking it for sleep.)

I asked if I can add that to the evening meds I currently take around 9-9:30 p.m., and she said yes. One dose a day, starting at 7.5 mg (half a pill) to be increased to 15 mg in a week or so if I don't have bad side effects other than sedation. Oddly (not my adjective) it is more sedating at the lower dose, so if the only problem is excess sleepiness, increasing to 15 mg could fix that. Dr. Segal also said that if it's helping, but not enough, the dose can be increased up to 45 mg/day.

Dr. Segal recommended this in part because it may help with my sleep, though I noted that part of why I'm not sleeping well is the tennis elbow, which is still at the point where my wrist hurts every time I wake up, making it harder, and less appealing, to go back to sleep.

I also filled the prescription for the diclofenac (NSAID) gel; twice a day, but I'm waiting until evening for the first dose because I had naproxen this morning.
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