“Simple Tips to Help Make the Medicine Go Down”
Please share any of your own tips in comments section so that we can all learn!
Here are some tips off the top of my head for people about to start or just starting some of the following medications. I will add more detailed information about the specific drug (and why they are used) in the future but I want to get this up quickly for folks who may be struggling/nervous about their new drug. I have taken all of these medications personally and this information comes from my experiences. I hope this info can help make things go more smoothly for some of you all.
a. Flagyl (Metronidazole): Your doctor may warn you that this medication has a metallic taste but I’m going to be straight with you… I would rather chew on aluminum foil than taste Flagyl. It left a HORRIBLE taste in my mouth lasting several minutes after swallowing. *PATIENT TIP 1 – Partially fill your mouth with a liquid with a strong taste (I liked/used cranberry or orange juice). Toss the damn Flagyl to the back of your mouth and swallow as fast as possible. This was the only way I could get Flagyl down without the taste and I tried all kinds of crazy stuff. *PATIENT TIP 2 – Do not drink alcohol. It made me super sick. I guess my pediatric gastroenterologist didn’t see many patients who drank alcohol because he never warned me… I mean seriously? I was a freshman in college.
b. 6-MP (Mercaptopurine): Be cognizant of your energy levels while taking 6-MP. If you notice yourself feeling super sluggish or tired while after taking 6-MP call your doctor and ask him/her to look at your iron levels. Mercaptopurine quickly caused bad anemia in me and I had to stop. It got to the point where I was going to bed at 8 pm waking up at 6 am, eating then going back to bed feeling like I had climbed a mountain. *PATIENT TIP – Before starting 6-MP (or Azathioprine) ask you doctor about your “TPMT” enzyme status (a blood test). This enzyme is required to metabolize the drug so that it can be effective in you. Around 11% of people have low enzyme activity and 1 in 300 patients have no activity. If you are in either of these categories you will not respond well. **PARENT TIP – Keep an eye on your kid/teenagers energy levels after taking 6-MP.
c. Remicade (Infliximab): The problem for me was not with Remicade rather it was the I.V. Benadryl. The Benadryl is used to help prevent allergic reactions but if it is infused close to the body in the I.V. line it can cause a bad burning sensation up your arm. For me this was extremely painful. ***PATIENT + PARENT TIP – Ask the nurse to “dilute the Benadryl with saline” or to place it high in the IV line to dilute it so that it doesn’t burn. He/She will know what you are talking about and it will resolve or greatly reduce the burning sensation. *PATIENT TIP – For me, after receiving Benadryl and Remicade exercise where you work up a sweat seemed to help me recover faster (probably psychological but I felt like the sweating was good). Don’t work out like crazy after your first infusion… make sure you’re, see how you handle the medications and start slow.
d. Humira (Adalimumab): Humira has a pH of about 5.2 (thanks Google) which means it is over 100x more acidic than your body. This causes the bad sting upon injection. *PATIENT TIP – Make sure the Humira is at room temperature before injecting, it is worth the like 20 minutes it takes to warm up because remember…cold Humira=painful Humira. *PATIENT TIP (from a good friend) – If you experience pain upon injection, ice down the injection site while the Humira is warming to room temperature. *PATIENT TIP (from same good friend) – If you are having skin reactions after the injection, rub some Benadryl cream on the site of injection.
e. Cimzia (certolizumab pegol): I basically just started this medication around September/October 2014 and I had to stop when I went in for surgery. I don’t have a ‘wealth of experience’ with this drug so I’m sorry I currently do not have a patient tip. Although do not worry it DOES NOT STING upon injection and causes less bruising/irritation than Humira did for me. IF YOU HAVE A CIMZIA TIP PLEASE COMMENT AND I CAN ADD IT HERE ALONG W/ YOUR USERNAME.
f. Iron supplements (ferrous sulfate): These were really hard on my stomach causing diarrhea (as if you needed more GI problems) if I took them on a completely empty stomach. The iron tablets did in fact change my stool to a dark almost black color, this is normal. *PATIENT TIP – Take iron with a little bit of food (more like a snack amount not a full meal), it helped reduce my discomfort.
g. Proton pump inhibitors like Prilosec OTC (Omeprazole): I have no idea how people have the discipline to take these medications as you are supposed to like 15 minutes before a meal on an empty stomach. If you have suggestions IF YOU HAVE A PPI TIP PLEASE COMMENT AND I WILL ADD IT HERE ALONG W/ YOUR USERNAME.
Katie Burr commented with the following tips. I didn’t want this to get lost in the comments section so she has graciously allowed me to post it here:
My med tips from 11 years of this lovely disease:
Pentasa: Don’t be freaked out that the capsules shake like mini markkas due to the active ingredient being in little balls inside. Also, don’t be surprised to see the little white balls (like those cupcake sprinkles we ate as kids) come out in very liquid stool or if you have an ostomy. (You get to know a whole other side of your food with an ostomy, heh.)
Flagyl: I don’t remember the taste because I was too nauseated to care. I took a phenergan with every dose.
6-MP: This can be a great drug in your arsenal, often in combo therapy. All meds have rare side effects that you should inform yourself about. (This caused me acute pancreatitis, but I had to search on my iPad through my drug info and tell the ER doc what was causing the pancreatitis. Otherwise, we might of kept taking it.)
Remicade: nothing much to say except that since it contains mouse protein, it is very unlikely that you can restart the drug after discontinuing it for a length of time. There is a Prometheus test they can run to look for the antibodies. The drug company is working on an injectable version minus rodent.
Humira: the hardest part is pressing the button. My advice is to take a deep breath and just press the damn thin! Sometimes out of anxiety of what was to come, I’d only tap the button, further prolonging the inevitable quick bite, slight sting and realization that you worked it up way too much in your head!
This one eventually caused me such bad site reactions that I had to stop.
Cimzia: All you lucky kids get pre-filled syringes now, but when I started, you got a vile of powdered formula and a vile of saline and you had to reconstitute it yourself. I can only compare the consistency to that of glycerin. Now with the pre-filled ones with OXO grips (for those with rheumatoid arthritis) it is simple. Let it site out for about an hour (no longer than 24…trust me, I had to call and ask). Once the shots are room temp, it’s not that bad. The bubble at the top of the syringe is supposed to be there. It pushes the last bit down and causes less bleeding usually.
Methotrexate: I hope you don’t have to take this, especially if you are sexually active. This is a chemo drug used for different things, including Crohns. Use the smallest gauge needle possible and you will barely notice an injection, get your liver enzymes checked regularly and practice extra extra safe sex since it is not just an issue for women, but men can pass along sperm powerful enough to deform a fetus. It may cause some nausea the first day or two of each injection and my hair thinned the slightest bit in the beginning, but it grew back even while continuing the drug. (I’m told I have fantom smells right afterward. I smell things that aren’t there. Others have reported it in forums. No biggie. I just walk around like a bloodhound trying to locate the origin of the offending odor, and my dog thinks it’s a game!)
These are not all the meds I’ve tried, only the ones I have tips, tricks, or snarky evil quips about. Hope I’ve helped!
thank you Katie for your insight. ~CP2P
TPMT enzyme status data:
1. Lennard L, Gibson BE, Nicole T, Lilleyman JS. Congenital thiopurine methyltransferase deficiency and 6-mercaptopurine toxicity during treatment for acute lymphoblastic leukaemia. Arch Dis Child. 1993 Nov;69(5):577-9
2. Lennard L, Van Loon JA, Weinshilboum RM. Pharmacogenetics of acute azathioprine toxicity: relationship to thiopurine methyltransferase genetic polymorphism. Clin Pharmacol Ther. 1989 Aug;46(2):149-54