u/Bright-Individual385 — reddlx

Pre-XDR Spine TB

Hey, M/24 currently in Mumbai, India.

I was expecting a phone call from the local TB centre for a different reason. However, when I picked up, the lady over the phone informed me to reach out to the government hospital in order to begin my course for Delamanid.

On one hand I was happy that a potent drug was now available and it was soon going to be added to my regimen. On the other hand, I was already suffering from pill fatigue.

This month also brought in the 13 drug susceptibility + high dose moxifloxacin test results. And as much as I hoped for the best, I'm afraid to say the heavens are a little upset with me right now.

After having been examined by my pulmonologist, it was clarified that the TB strain is resistant to even high-dose moxifloxacin. So he suggested that “the addition of Delamanid certainly strengthens the regimen although we might need to continue Bedaquiline till the end of the course in order to prevent any further resistance”.

Something inside me broke down. I was already trying to process how to get through this year, but now I have to try and get through the next one as well. This statement meant the possibility of an 18-20 month regimen (which was already long) just changed to 20-22 months and I was... well... sad as there are more bitter pills to swallow.

...

The good thing about this month was that my weight increased. It hopped from 64.3 kgs last month to a staggering 70.2 kgs. I have never hit seventy before in my life. I have always been fit, chiseled and athletic and so it's a new new for me too when I see my belly being round and fluffy. I guess those eggs really helped.

There are no real side effects as of now. I have noticed light tremors from time to time. It's like my fingers would shake a little when I try to eat something through the spoon. This is probably due to strained nerves in the back when I sit for too long.

I have noticed brain fog and trouble concentrating. When this happens, I'm doing all the things except the thing I should be doing lol. Apart from this, I'm just having weird, obnoxious, innocuous and all kind of dreams.

I'm also fatigued half the time so I'm sleeping the usual 7-8 hours + 3-4 hours nap after the afternoon dose. Speaking of dosage, that has changed too given my weight increased so much.

Here's the new regimen -

DLM will continue for six months.

BDQ will continue till the end of course.

Morning - After Breakfast (9:15 AM)

• CYC - 2 tablets (500 mg total)

• CFZ - 2 tablets (200 mg total)

• DLM - 2 tablets (100 mg total)

Afternoon - After Lunch (1:45 PM)

• BDQ - 2 tablets (200mg total)

—> Alternate Dose : Mon, Wed, Fri

• LNZ - 1 tablet (600 mg)

• PYR - 2 tablets (100 mg total)

Night - After Dinner (9:30 PM)

• CYC - 2 tablets (500 mg total)

• DLM - 2 tablets (100 mg total)

There are three considerable changes. Addition of DLM, the shift of LNZ to afternoon (previously morning) to balance the dosage, and increase in CFZ to 200 mg (previously 100 mg) and CYC to 1000 mg (previously 750 mg). This is textbook in terms of preventing the strain from developing resistance in accordance with weight.

Also, my calcium/zinc dosage has ended. I'm continuing with Vitamin D3 once per month for maintaining bone health. Apart from this, I don't have much to say at the moment. Hope you guys are doing well in your respective journeys. Thank you and cheers!