Medication Suggestions for Crohn's

[tiffsea]

Hi,

I am a 29 year old with Crohn's. My doctors say most of my inflammation is in duodendum area of my small intestine. I was diagnosed at age 20, tried a couple prescriptions to alleviate symptoms (Entocort and Pentasa) for a couple years when I was diagnosed, but nothing really helped and I had weird side effects to both Entocort and Pentasa --- skin rashes, sleep disturbances, stomach aches... So I've been drug free for 7 years now. The only prescription I take is birth control (Junel Fe) I also take a probiotic, zyflamend, boswellia, vitamin d, spirulina, iron supplement, and b-complex. I've been doing alright for a while now. I'm almost always bloated in my stomach, but I guess I've just gotten used to it. But lately I've been feeling so tired and foggy. I can sleep for 12 hours and still feel tired. Nothing really wakes me up. I'm in school and it's really stressful to not be able to focus. My stomach feels more bloated than normal and I'm considering medications, but I feel so lost. I don't have a good gastroenterologist, and I wanted to do some research into medicines before making an appointment. What medicines work for you, with your Crohn's symptoms? What medicines didn't work or made symptoms worse? If I could just be less bloated and more energized I really think I'd feel so much better. I hope there's a way. Any help is greatly appreciated! Thank you! :ghug:

*Side note: I was born with one kidney and I'm also worried about all of the kidney warnings a lot of Crohn's meds come with. I also had my gall bladder removed about 15 years ago, but that's less of a concern.

 

[ce1210]

Hey tiff, its very cool that you have been able to be off meds for years, but having the constant discomfort stinks. I am currently tapering off entocort, but I had some of the side effects you had. I have had headaches, skin infection, urti's, and more back pain than usual. I have been using medical marijuana and low dose naltrexone as I'm coming off the entocort and so far feels like its working. The MMJ definitely helps as I can be having pretty moderate symptoms one day including stomach cramps, bloating, gas pain, D, etc. and a few puffs usually makes it better right away. Other than LDN, Entocort, MMJ, Asacol HD (made me feel awful), probiotics, and diet changes I havent tried anything. I really try at all costs to avoid these crazy drugs they prescribe for Crohn's my doc is still trying to push 6-mp on me and some people on here have had good luck with it, but the side effects are too scary for me. If you haven't turned your diet into a science (lol) or tried MMJ then I am out of suggestions for you.. Good luck, I hope you find what you need to feel better.

 

[SarahBear]

Hi, tiffsea.

It's great you've been able to go med-free for so long, but now that your symptoms are becoming troublesome I agree that medication is a good option at this point. Personally, in your situation, I would go back on medication, at least until I got through school and things settled down a little. If you prefer being med-free, I'd look into going off them at that time. That's just my preference, as a flare while going through school can cause a lot of problems.

Unfortunately, there's really no way to base your experience with a medication off of someone (or many someones) else's; just as Crohn's affects us all so differently, we all react very differently to medications as well. Just something to keep in mind.

I've only been on Prednisone, 6-MP, methotrexate, and Pentasa. I'll skip Pentasa as I only took it for a few weeks, so you probably have more experience with it than I do. I also only took 6-MP for several weeks, maybe a month, so I don't have much to say on that one, either.

Starting with Prednisone - however, if you've taken Entocort before and it worked for you, you're probably best off taking it again (if needed) instead of switching to Pred. Before I get into it, I want to stress that my experience with Prednisone was extremely abnormal and could have been prevented. I had the typical moon face, increased appetite, weight gain (which was greatly needed), insomnia, etc. My body was running at half speed and my mind at double - I'd talk so fast I got out of breath. Unfortunately, the insomnia was so bad for me that I slept maybe two or three hours every three nights. My doctors wouldn't give me anything to help me sleep because I was underage, so I tried cutting out caffeine and taking melatonin tablets to see if it made any difference (it didn't). The insomnia got to the point that I was so exhausted I started hallucinating and they had to speed up my taper to get me off of it as quickly as possible. While insomnia is normal, that severity is not, and a sleep aid would have solved the problem.

Methotrexate did great things for me. I switched to MTX from 6-MP because injections were easier for me than pills (note that MTX is available in pill form as well, if that's your preference). I had a weekly injection and no noticeable side effects. The injection was really easy - in fact, it used the smallest needles available and didn't hurt at all. I took MTX for about a year and a half, and only stopped then because I lost my medical insurance. I did go into remission while taking MTX. If you end up taking it as well, make sure you request folic acid tablets if they're not given. MTX depletes folate, but the tablets take care of that.

Liver damage is usually more of a concern on these medications than kidney damage. However, since you're at a greater risk for problems, you can request they do blood work to monitor kidney function as well as liver (they should automatically set up blood work to test your liver if you take 6-MP / Imuran / Azathioprine or methotrexate - I'm not sure about biologics, but you can request the kidney tests even if they're not doing liver). That shouldn't be a problem. At the first sign of any problems, they can take you off of the medication.

Are you going to be seeing the same GI, or are you looking for a new one? If you don't feel confident with the one you have, I encourage you to find a different one if at all possible.

In the meantime, ginger, cinnamon, and peppermint can all help with bloating. Ginger ale, peppermint candies, and peppermint tea are all great.

:hug: I hope things go well!

 

[tiffsea]

Hey tiff, its very cool that you have been able to be off meds for years, but having the constant discomfort stinks. I am currently tapering off entocort, but I had some of the side effects you had. I have had headaches, skin infection, urti's, and more back pain than usual. I have been using medical marijuana and low dose naltrexone as I'm coming off the entocort and so far feels like its working. The MMJ definitely helps as I can be having pretty moderate symptoms one day including stomach cramps, bloating, gas pain, D, etc. and a few puffs usually makes it better right away. Other than LDN, Entocort, MMJ, Asacol HD (made me feel awful), probiotics, and diet changes I havent tried anything. I really try at all costs to avoid these crazy drugs they prescribe for Crohn's my doc is still trying to push 6-mp on me and some people on here have had good luck with it, but the side effects are too scary for me. If you haven't turned your diet into a science (lol) or tried MMJ then I am out of suggestions for you.. Good luck, I hope you find what you need to feel better.

Thanks for your response. I'd love to try MMJ, but it's not legal where I live. I have to be drug tested for school because I'm studying Nursing. It's truly a bummer, because pharmaceuticals have more potential for side effects and haven't been very helpful for me personally. Maybe one day I can legally try medical marijuana, but sadly I can't do that

 

[tiffsea]

Hi, tiffsea.

It's great you've been able to go med-free for so long, but now that your symptoms are becoming troublesome I agree that medication is a good option at this point. Personally, in your situation, I would go back on medication, at least until I got through school and things settled down a little. If you prefer being med-free, I'd look into going off them at that time. That's just my preference, as a flare while going through school can cause a lot of problems.

Unfortunately, there's really no way to base your experience with a medication off of someone (or many someones) else's; just as Crohn's affects us all so differently, we all react very differently to medications as well. Just something to keep in mind.

I've only been on Prednisone, 6-MP, methotrexate, and Pentasa. I'll skip Pentasa as I only took it for a few weeks, so you probably have more experience with it than I do. I also only took 6-MP for several weeks, maybe a month, so I don't have much to say on that one, either.

Starting with Prednisone - however, if you've taken Entocort before and it worked for you, you're probably best off taking it again (if needed) instead of switching to Pred. Before I get into it, I want to stress that my experience with Prednisone was extremely abnormal and could have been prevented. I had the typical moon face, increased appetite, weight gain (which was greatly needed), insomnia, etc. My body was running at half speed and my mind at double - I'd talk so fast I got out of breath. Unfortunately, the insomnia was so bad for me that I slept maybe two or three hours every three nights. My doctors wouldn't give me anything to help me sleep because I was underage, so I tried cutting out caffeine and taking melatonin tablets to see if it made any difference (it didn't). The insomnia got to the point that I was so exhausted I started hallucinating and they had to speed up my taper to get me off of it as quickly as possible. While insomnia is normal, that severity is not, and a sleep aid would have solved the problem.

Methotrexate did great things for me. I switched to MTX from 6-MP because injections were easier for me than pills (note that MTX is available in pill form as well, if that's your preference). I had a weekly injection and no noticeable side effects. The injection was really easy - in fact, it used the smallest needles available and didn't hurt at all. I took MTX for about a year and a half, and only stopped then because I lost my medical insurance. I did go into remission while taking MTX. If you end up taking it as well, make sure you request folic acid tablets if they're not given. MTX depletes folate, but the tablets take care of that.

Liver damage is usually more of a concern on these medications than kidney damage. However, since you're at a greater risk for problems, you can request they do blood work to monitor kidney function as well as liver (they should automatically set up blood work to test your liver if you take 6-MP / Imuran / Azathioprine or methotrexate - I'm not sure about biologics, but you can request the kidney tests even if they're not doing liver). That shouldn't be a problem. At the first sign of any problems, they can take you off of the medication.

Are you going to be seeing the same GI, or are you looking for a new one? If you don't feel confident with the one you have, I encourage you to find a different one if at all possible.

In the meantime, ginger, cinnamon, and peppermint can all help with bloating. Ginger ale, peppermint candies, and peppermint tea are all great.

:hug: I hope things go well!

Thanks for your response! I know everyone's different, I was just hoping to hear some feedback because I feel so lost. I am hoping to try a new GI because I felt my last GI was very dismissive and kept pushing remicade, which seems a little extreme considering I haven't really tried many other meds. I also tend to get sick a lot (colds, viruses, etc) so I'm a little reluctant to jump into an immunosuppressant.

Is MTX for crohn's or colitis? What symptoms did it help to alleviate? I've never heard of it before. I actually wouldn't mind something injectable considering I feel most things I ingest --- food, pills, etc --- don't really absorb well or sometimes not at all. Did MTX have any weird side effects for you?

Thanks again :hug:

 

[SarahBear]

Hearing others' experiences can definitely help - I just wanted to make sure you don't get hung up on someone else's negative experiences and entirely avoid a medication that could greatly help you.

You can read about MTX in the forum wiki (here) or in the MTX section of the treatment forum (here). It is used for Crohn's, as well as other conditions such as RA, psoriasis, and certain forms of cancer. I don't know if it's effective for treating UC and am having trouble finding information on that.

The MTX put me into remission, so it helped with all of my symptoms. It made my Crohn's inactive. I didn't have any strange side effects - in fact, I had none at all as far as I could tell (however, I was on Prednisone at the time, so some mild side effects may have been masked). It's my understanding that side effects are much more common with oral MTX. Side effects associated with MTX are the basic nausea, diarrhea, etc. (you can find more here: Methotrexate Side Effects in Detail)). It can cause liver damage, but blood tests should be done to watch for that (and kidney, since you're in a precarious situation there). When I started MTX, I had blood work done every week for a month, then every two weeks, then down to once a month, where it stayed. If you take MTX, the most important things are 1) to have that blood work done, and 2) to get folic acid tablets, which should be prescribed with the MTX.

The injections can definitely be easier. It's kind of weird to think about, but it's a pretty simple process and not at all painful. If you'd like, I can run through the injection process for you.

I would also look into Imuran / Azathioprine / 6-MP if I were you. Hopefully someone with more experience with those medications will come along.

 

[Crohn2357]

SarahBear, may I ask you, how long did methotrexate take to make your crohn's inactive?

 

[SarahBear]

SarahBear, may I ask you, how long did methotrexate take to make your crohn's inactive?

I was on it for maybe six months before I started to see improvements, and it just kept getting better. remission wasn't confirmed with scopes until maybe two years after I stopped MTX. It's worth noting that while taking MTX I also removed myself from a very stressful living environment; it's difficult to determine exactly how much can be attributed to the MTX and to the lifestyle change. I believe MTX put me into remission and the lifestyle change made it possible to stay that way after I had to stop MTX.