Medication tips

“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.2015-02-01_7-23-21

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

9 thoughts on “Medication tips

  1. Anyone out there that take Methotrexate as well as Humaria for Crohns. I had Ulcerated Colitis, for 14 years, which has turned into Crohns. These med’s have help, been taking them for about 2 months now, but I tell you what, I have never felt so exhausted in my life, along with muscle pain and weakness, and yes, I also take Folic acid.

    I’m usually one to be out going for walks, riding my bike, gardening ect. I’m going to be spending a couple of month, with my daughter and Grandkids 🙂 but, I’m very concerned about feeling like this, for usually I’m the Nana on the go…..

    Thank you, Laura
    54 years old

    Like

    • Laura, I have not taken methotrexate (MTX), although I believe I will be starting MTX in the near future. I think that more people take 6MP or azothioprine before taking MTX to avoid additional injections. This being said I think that many Crohns patient can relate to the kind of fatigue you are describing. I will reach out to a few people I know who I think have taken MTX to see if their experience with fatigue on this drug was worse then others they had taken. Hang in there Nana!

      Like

  2. 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!

    Like

    • Katie, these are excellent comments thank you! Do you mind if I add these to the post so that people see them? I will just add another section below what I wrote and say by Katie Burr a reader. this is valuable insight and I want to make sure folks read it if they dont click the comments they wont see

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  3. I am 24 now. I was having severe abdominal cramping and a lingering (99.4) fever for about 7-10 days before I went to urgent care. They told me I had constipation. I was told to do an enema (which my surgeon then said could have made it worse). I went back a few days later with consistent cramping and after all the tests done they told me to go to the ER. I was told in the ER i may have an abscess and possibly crohn’s. I was seeming to improve but my second cat scan proved worse. The surgeon went in and removed 16 inches of my small bowel, 1/10th of my colon and all of my appendix all within one surgery. It was my initial procedure (emergency surgery).

    I go to the GI doctor this coming monday and then back to my surgeon for a checkup. I am not currently on any meds, but I am deathly terrified of being started on any. I’m hoping a lot of my diet changes will help, but I can’t seem to keep a lot of “solid” stool. It’s not liquid, but not solid either.

    yes, a lot of this does help! I am still full of a ton of questions that hopefully my GI doc can explain but I will definitely be following your posts.

    You stay strong as well. You’re story has been inspiring and has allowed me to keep my head up. I have even considered a career change into dietetics and nutrition because of all of this.

    Like

  4. Your blog has been so great! I was just diagnosed with crohns a little over a month ago. I had 16 inches of my small bowel removed, 1/10 of my colon and my appendix. I’ve been recovering but really doing research on medications. Is it possible for me to avoid meds?

    Liked by 1 person

    • Hey i’m glad you are enjoying the blog although I wish it were on better circumstances. I hope I can pass on helpful info to you but I have questions to clarify some things.
      How old are you? Was your surgery the initial presentation of the disease (the first time you had symptoms)? Were the small intestine, colon and appendix removed during 1 operation that was a month ago and you got the diagnosis then? Have you seen a gastroenterologist yet? Are you on any meds now? that info would help a bit I think lets start there (dont answer if you’re not comfortable).

      As you know the surgeons have removed the tissue that landed you in the hospital. This diseased tissue was the source of your GI problems before the surgery, and now that it is gone you have what is called “surgically induced remission” just like me actually. This doesn’t cure you from Crohn’s (there is no cure) however alot of people can come back from these surgeries feeling better than they ever had in the past once the really bad tissue is gone. I suspect your doc will want you to take some meds so as to calm down the inflammation that caused the problems in the small bowel/colon in the first place . There are alot of different strategies (medicine regimens) for making sure you get into remission as you may know. Don’t forget that Crohn’s can go into true remission for alot of people and some folks are able to stop medication and able to live med. free lives for decades! So do not think you are ‘doomed’ to be on meds your whole life, the goal (and reality for some) is that they can stop taking meds. I know a man like this who got into remission and didnt need meds for like 20 years. Obviously others have it quite differently.

      Im not sure I told you anything you didnt know already :/ so im sorry for that but alot of this you will need to discuss with your gastroenterologist to determine the best path moving forward.

      Does any of this help? Stay strong with the new diagnosis keep your head up I know it can be tough!
      I will have more posts comming soon so follow the blog to get emails when I post new article, request a topic if you want.

      Like

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