Rafampin side effects

[Marocean]

I started the four-month treatment regimen of Rafampin on July 13. Up until last week the only side effect was dark orange urine. But over the last week, I’ve started getting reflux during the day and especially at night. The effect is feeling like my throat is closing up or someone has their hands on my throat. During the night, it is rather anxiety producing to say the least. I had a TeleMed appt two days ago and doc recommended the bland/Brat diet for five days to see if that helps, as well as Zantac (Famididine) am and pm, and Benedryl at night for both the anxiety and anti-histamine effects. It’s definitely easier to manage during the day when it’s light out and I can distract myself easier.

Has anyone going through the four-month Rafampin treatment regime had any side effects other than the dark orange urine? I am really interested in if you’ve had side effects, what you’ve done and how it’s helped. I’m using the Calm app for breathing and meditation help. Almost at the Sept 11 halfway mark!

[HelenC Partner TB Alert]

Hi Marocen,

This does sound very traumatic. Has the prescribed medication helped? Unfortunately, TB treatment does come with many side effects but these can often be managed with other medications and also lifestyle changes. For example, eating regular small meals may help line your stomach if you have little appetite, this may help the medication sit more easily.

Best wishes,

Helen

[Marocean in reply to HelenC]

Helen,

Thanks for the quick reply! I've since had a phone appt w/ a doctor (not my regular doctor) to discuss this and she recommended Flonase nasal spray to see if that will help the on/off drainage, which might be the cause. Maybe. And I am now eating small meals and that may help. When I started the tx on 7/13, I started a gluten-free, dairy-free, etc diet and that seemed to be good for the first 1 1/2 months so I'm wondering if it's the antibiotic finally wreaking favoc (build up perhaps?) in my gut. We'll see. I did get a Rx for an anxiety med but want to only take that as a last resort. Sometimes just knowing I have it helps :). I did decide that I can't stop eating so need to nourish my body somehow. Maybe a meal replacement drink for dinner...it's process.

[swiftgirl in reply to Marocean]

Hello MaroceanI have really struggled with the side effects. I am on four different antibiotics including rifampicin so it is hard to know what is causing what. Antihistamines have helped with the itching, rash and anxiety. I haven't had reflux. So sorry it sounds horrible.

Keep patting yourself on the back for each week you manage.

It is really tough. Well done and take care.

[Marocean in reply to swiftgirl]

Thanks for the quick reply! I appreciate your support, I just kind of feel like I’m alone. Next week I will have gone to the halfway mark so I’m trying to figure out ways to take a positive spin on all of this. In any case thanks for the reply and if you want to continue to support each each other, just let me know.

[Marocean in reply to swiftgirl]

I forgot to add from my comment it you’re definitely having some side effects to the medication, they’re just different from the ones that I’m having. Antihistamines are helping, and interesting that you mention anxiety because one of the doctors I saw said that antihistamines can’t help with anxiety. Hang in there, I’m thinking that you are a little more than halfway there?

[Marocean in reply to Marocean]

I mean the doc said antihistamines CAN help with anxiety

[Jack70 in reply to Marocean]

These TB meds destroyed my gut so do everything you can to stop damage. I was given no warning on the damage these drugs do especially the Fluroquinolones. Was on a combination of 3 for 12months then different combination for 6 months. They have left me with torn tendons and severe muscle wasting and neuropathy / insomnia + many other problems. Ask to be regularly screened for autoimmune antibodies . When I became ill the useless doctors just kept saying “ it’s your infection that’s causing your symptoms “ until I insisted on the autoimmune screen which came back positive for drug induced lupus. He then kept this information to himself for 6 months damaging me further. Be careful they don’t seem to know or care the damage these drugs do.

[Marocean in reply to Jack70]

Geez so sorry to hear about your experience. I guess I’m lucky because I had already started on a different eating program through a registered dietician and was taking a probiotic in the evening so I think that’s definitely been helpful. And I definitely know that antibiotics can have a pretty real effect on the gut biom. I’m also lucky, I guess, that I am able to have meaningful conversations with my doctor and the doctors that are covering for her when she’s not available. Have your symptoms included the one that I’m having? Any help would be appreciated. Since I’m halfway through, and I’m only on rifampin, I want to take as positive a spin on this as I can. Take care!

[Jack70 in reply to Marocean]

You’ll probably be fine just on the rifampin. I was managing things until they changed the ethambutol to Ciprofloxacin that’s when the bomb went off.

You’ll be fine but stay vigilant and keep a diary and eat and drink as much as possible +exercise.

Good luck

[HelenC Partner TB Alert in reply to Jack70]

Good advice Jack70