I get a lot of questions about the medications I am on, both for physical and mental health reasons, and the positive or negative side effects they might have. So it’s all here – past and present drugs and what they did/do to/for me.
Humira. This is a ‘TNF inhibitor’ which basically suppresses my overreactive immune system. It’s an injection I administer myself every two weeks. Humira is expensive and dangerous, so you only get access to it after you’ve failed other drugs, and you have to have an MRI scan showing the AS damage in your spine.
Gabapentin. (900mg daily – 300mg pills 3x a day). This is a drug for nerve pain. It helps with my pain but it also really helps my Restless Legs Syndrome, which is amazing because before I was on it my legs used to get so so sore and I couldn’t sit down or lay down for any length of time.
Codeine. (Anywhere from 8mg to 90mg depending on the day). An opiate for pain relief, obviously. It helps take the edge off. I try to keep my doses small because it’s addictive, it causes constipation, and it worsens my nightmares.
Omeprazole. (40mg) Helps keep my stomach protected from all the other drugs. I have no side effects or anything with it and it works.
Ondansetron. (8mg) An anti-nausea pill. A fucking godsend, I wish I’d been prescribed it when I first started getting sick. Only side effect is it makes my restless legs worse.
Doxazosin. (2mg) This an alpha blocker, and I’ve only just started it. I’ve been prescribed it because it can have the side effect of helping nightmares. So far, no dice, but I’ll keep trying. The issue with it is it lowers blood pressure, and I already have low blood pressure, so I have to make sure to stand up slowly and stuff so I don’t faint.
Venlafaxine. (187.5mg currently, goes up in 37.5mg doses) An SRNI antidepressant. It seems to be helping me. It was hard going up doses, but the higher the dose, the better it is for anxiety. When I went up doses, I had very strange dissasociative episodes. But it’s been good for my mood and also libido. The biggest issue with it is the withdrawal – it’s got a short half life so if you miss a dose, you’ll know about it. I don’t intend to ever come off it because I’m not sure I could go through that.
Quetiapine. I take a small amount of quetiapine (12.5mg) occasionally at night to help me sleep. It is an antispychotic that is often used to treat bipolar disorder in higher doses. In my small dose it’s just for anxiety. Unfortunately it causes nightmares and also leaves you super groggy the next day.
Zopiclone. (half 7.5mg pill) A sleeping pill. Only occasionally, in very small doses, because again, it’s addictive and causes nightmares. So I have to choose between being awake and stressed out or asleep and thinking I’m dying. yay!
Clonazepam. (1mg) An anti-anxiety benzodiazepine. I take this every day to treat my anxiety. You’re not supposed to be on benzos for very long because they are addictive but my case has been so severe – and I am not exhibiting addictive tendencies – that my doctors have allowed it.
Melatonin. This helps me sleep but gives me nightmares.
Probiotics. Super super important, even if you don’t have a messed up gut like mine. I also try to have things like kefir yoghurt to try and get a good balance going. Lifestream is a good brand.
Apple cider vinegar. Good for a bunch of things, including digestion. I hate it but I drink it.
Turmeric. Good for reducing inflammation. The best way is to cook the root and eat it but again I hate it so I take the capsules. I’m not sure I really see all that much of a difference but my doctor goes on about it so I do it.
Fenugreek. Good for gut health.
Evening primrose oil. I get terrible moods before my period so I’m testing to see if this helps.
PAST (well, the ones I can remember anyway)
Norflex. This is a muscle relaxant type thing. It really helped with my pain in bed at night, but it gave me hideous anxiety the next day so I had to stop it.
Tramadol. Pain medication, again. The first time I took it I tripped balls. When I tried again, it just didn’t really do anything for my pain so I stopped it. It’s also highly addictive.
Diclofenac. This is Voltaren. It’s good pain relief but wears away at your stomach and can cause ulcers so I’m having a break from it.
Naproxen. An NSAID – nonsteroidal pain relief. It did nothing for me but I have other friends with AS whom it helps.
Prednisone. Steroid. Courses of prednisone are amazing and make me feel like a god, but it’s only administered for short periods. It reduces all my symptoms and gives me heaps of energy and boosts my mood. Unfortunately, addictive as fuck and bad for your body in general.
Citalopram. SSRI (serotonin selective reuptake inhibitor. An antidepressant that didn’t really work and felt like death to try and come off.
Escitalopram. As above (more concentrated dose).
Sertraline. Antidepressant that has worked well for a bunch of people I know but fucked me up real bad. I got very dissassociative and self harmed a lot. Lost interest in life. It was not good.
Lorazepam and diazepam. Benzodiazepines like Clonaz, but they didn’t work me as well.
Ordinazole. I threw up a lot. This was given to me to treat possible giardia.
Metronidazole. This is the course I had that caused my C.diff infection. It’s common but it decimates your stomach so always always with antibiotics take probiotics.
Vancomycin. This is what they gave me in hospital to treat the C.diff. It killed *everything* in my stomach and also saved my life.
I can’t remember any others right now, but I do know there is more, and if/when I think of them, I’ll update the list. And if you have questions, just ask.