Questions before doc appointment

Hi all,
I’m talking to my doctor next week for the first time since my switch to Remicade. She’s been scattered, uncommunicative and reactive in the past (I’ve carped about her in earlier posts) and I’ll only have a few minutes so I’m hoping to be as prepared as possible before the meeting so I’m not left reeling again. I have my current status, and a few questions, below, and would welcome any input.

- Remicade - 3 Loading doses completed, I’m have my 1st maintenance dose in two weeks. (8 week cycle)
Worst symptoms are reduced, but not feeling like remission yet:
- Occasional bad day with 6-8 urgent diarrhea including overnight (These days are getting fewer, once every two weeks maybe).
- going 3-4 times most days, usually at least 1 relatively formed.
- Urgency at least once each day, occasional liquid accidents (still using and needing the incontinence pads daily).
- Some blood every day, but not every time
- Every day at least one blood-only movement (small clots), preceded by very low strong cramps (although these are fewer than they were)
- Up at night 1x per night, usually just a little blood.
- can occasionally lie comfortably on left side
All the abone are improvements over pre-Remicade (Entyvio Dec-Jun).

Calprotectin: Feb: 10,200. May: 3300. Oct: 2850

It seems to me things are moving in the right direction but wondering - Should I be satisfied that things are going as expected (and will the doc be?). How long does it typically take to get to remission if it’s going to happen? Is the calprotectin drop meaningful? Or should it be lower by this point if the drug is going to work?

What changes to dosage or time between treatments might be suggested by the doc? The Infusion nurse mentioned I’m on 'a nice low dose'. Does that mean I could get a higher dose and what are the implications of that? (I guess I should know my dose, but I don’t. I think it’s weight based and I’ve lost a lot of weight and continue to drop, so maybe that’s why the low dose).

That’s a lot of questions . Thanks for any input.

Midge, the usual dose is 5kg & the amount you get is weight based. Your drs office relayed to the infusion center your weight. Unless you have gain or lose more weight it will not change. Starting a patient at 5kg gives the dr room to increase the dose if needed. From what you are saying you are seeing improvement that is a good sign. Infusions can be moved closer together. Can't really give a time frame on when you can expect remission because everyone is different. Based on what you've written here I wouldn't expect to be moved to 10kg. Another good sign is your calprotectin number is going down.

Discuss your current symptoms with the your dr, also I would ask about enemas, you need to treat both ends. Ask at what point would he/she consider moving your infusions to every 6 weeks. My dr waited 6 months to move my infusions closer together, needed to get a few single infusions done after the loading phase.

Just my 2 cents.

Thanks very much for the replies! It’s so great to have a 'sanity check' before my appointment.
Id286 - That’s a great approach, because you’re right, her agenda totally squeezes my prepared questions into the last few seconds when she’s clearly reaching for the exit meeting button. Reading your note it occurred to me that these meetings are really for me, not her. (So perhaps I’m just slow on the uptake ;). Anyway, I’ll be conscious of trying to get my questions in first this time.

Susie and CC, thanks for the info, it’s really good to hear your perspectives Re what to expect and validation of where I seem to be at, before my appointment. I’ll definitely ask about rectal meds, as I used one (salofalk) two years ago before biologics and they were very helpful for a good while. They may just be the thing to push me forward. Yes, 'functional' is a great word to describe how I feel now - way more functional than I’ve been in 2 years, but always with the exciting possibility of popping myself randomly 😂. I’ll take it, but it would be nice to get a better handle on that last bit!
Thanks again, I’ll let you know how the appointment goes and if I’ve managed to grab the reins a bit.

I can't make suggestions regarding the meds you're now on, but I sure can suggest rectal retention enemas. If you can't use mesalamine, then request to be given the steroid ones as suggested by CCinPA. I stress the request part.
q

The standard dose is 5 mg per kg body weight. So e.g. if you weigh 60 kg your dose would be 5x60 = 300 mg = 0.3 g = 0.0003 kg 😁

Sometimes it is worth increasing to 10mg/kg. Usually a (sensible) doctor will order a blood test to measure the levels of remicade in your blood just before your next infusion - this is known as the trough level, and depending on the result of that they may also test for antibodies to remicade.

I will be honest I would consider your symptoms as not very satisfactory after 3 infusions and think it is imperative to check for antibodies and depending on the result either increase the dose or switch to another medication.

Mesalamine enemas don't work for me. Steroid ones helped and I found them easier to retain than the others. I never had any side effects from them like pred, but some here have said that they did.

Midge, so glad to read that you had a good appt with your dr. I am fortunate that my dr listens to me when I have questions & does not rush through my appt.

about those spasms, it's called tenesmus & can be awful to deal with. You need an antispasmodic, my dr prescribes generic Bentyl & it helps a great deal. If you have a patient portal send a message to your dr requesting this. If no patient portal make a phone call.

Take care.

Rectal spasms are also caused by inflammation...and I don't see the point of a doctor's wait and see to not rx you the rectal meds. The excuse of them not helping because you have inflammation throughout your colon just shows arrogance. And yes, adding antispasmodics are also a help, dicyclomine is my friend. However, they do not deal with the inflammation.

Dont suffer too long before requesting the rectals. But for sure ask for the antispasmodic.

q

I can actually see your doctor's point in the sense that if you try multiple things at the same time, you can't disentangle what is doing what. Enemas will not reach beyond the left side of the colon and you do need to treat the inflammation higher up, so I would tend to agree with your dr - first try increasing remicade frequency and then if you have lingering left side inflammation you can add enemas. I still use enemas now in conjunction with xeljanz and after 4 years I'm pretty fed up with them tbh, they interfere with getting to sleep, they are bulky when you want to travel and i don't have space to store more than a few weeks supply in the house which means multiple trips to the pharmacy for re stocks. Also in the past when i had severe inflammation they did precisely zero. It's only when i started to have mild inflammation in the rectum (when i switched to a lower dose of xeljanz) that they were effective.

I second some of the replies that rectal meds are a must with this disease. The inflammation starts in the rectum and ends there as well and that area is also the most stubborn to treat. They may even help you avoid Remicade dose escalation/shorter period between infusions, although it sounds like with your calprotectin and symptoms that you needed it this time.
But definitely ask to try the rectals, start with mesalamine enemas as these have less side effects than the corticosteroid ones, before any dose escalation in the future. They are inconvenient to use but can be immensely helpful.
I hope you feel better soon Midge.

Tenesmus for me was mostly after a BM and felt like a hardening of my rectum or sphincter. It was extremely uncomfortable but it didn’t make me feel like I had to go but it felt like a muscle spasm after the BM. I asked for the antispasmodic dicyclomine (generic for bentyl) and it is a big help. I suggest you try it. You only take it as needed I understand drug hesitancy as I have it by the carload 😄 but it’s not like you have to take it often I didn’t find it much help while in a flare as I feel the inflammation was too much but I still take it occasionally. You might be surprised at how helpful it is, and if not , then at least you tried.

Thanks everybody!