Have you changed meds because of fatigue?

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InkyStinky

InkyStinky

Joined
Feb 19, 2010
Messages
603
Location
USA
Hey everyone! I’ve been gone awhile – was working part-time and that with my @#$% fatigue really floored me. I’m at my frustration limit with trying just about every anti-fatigue suggestion I can find and having none of them make a bit of difference.

Anyway, I have an appt with my GI on Mon and I was wondering:
1) Has anyone ever changed meds when their only IBD symptom was fatigue?
2) If so:
a. What meds did you change from/to?
b. Did the change help combat your fatigue?

I’m on 6mp (the docs lowered the dose and my liver levels are about back in normal range) – as I’m allergic to the 5ASA drugs, I guess my next options would be methotrexate, Humira, or Remicade? All input appreciated – my GI doc isn’t much help and I really need to make some sort of change so that I can function.

Thanks!
 
Should add that I'm not anemic, get adequate sleep/exercise/nutrition, no D, no bleeding, and B12 was normal when checked during my last flare. (Can you get a B12 shot if your level's normal? Does it help?)
 
Have you had your iron stores and folate stores checked as well, also your thyroid function? Also blood sugar? Finally, any chance you could be pregnant? I went to my gp because all my other symptoms were gone except the fatigue, she said there must be something else causing fatigue, those were the tests she ordered. Turns out my iron stores were low. And do you know your exact numbers, because you can suffer with symptoms of deficiency or anaemia if you are borderline between normal and deficient. As for b12, you can get regular tablets and dissolve them under your tongue, or take up to 2000mg at a time, I found that is useful for a one-off energy boost but it doesn't help taking them regularly, if that makes sense!
 
Thanks Rebecca! I'll ask my GI - I don't think my iron or folate stores have been checked recently. Not sure on the blood sugar, but thankfully I'm sure I'm not pregnant - I don't have my last cbc in front of me but I'm pretty sure I'm not low-normal on the anemia... I'll have to double check though.

My thyroid was checked in the middle of my last flare - right smack dab in the middle of the normal range. They've checked my thyroid over the years whenever I make a big fuss over fatigue... it's always in the middle of normal. But my grandma had thyroid problems so I'll mention it again.

My GP thinks the fatigue is from the 6mp, but my GI didn't want to change the 6mp because it controls my gut-symptoms so well. But something's got to change because I'd be frantic about this fatigue if I had any energy with which to be frantic... :tongue:
 
While i was on 6mp i noticed severe fatigue. One night I was sitting watching tv with my family and couldn't keep my eyes open, which is rare for me. Also, I found i was short of breath a lot and slept for long periods of time. I found I had become anemic not sure if it was due to the 6mp or not but a decrease was noticed. After switching to Asacol HD my hemoglobin was back on the rise again, but still not average. So I take iron supplements daily to restore the iron levels. Now I feel like i have enough energy and feel 19 again. Not sure if this specifically answers your question, but that is my experience with changing of meds from 6mp to something else.
 
Thanks for your input, Joey - I'm allergic to asacol but I appreciate hearing that you found a different med that works for you. Going to push my GI for another option - this fatigue is really out of control.
 
Hey, Sabrina. Sorry to hear the fatigue hasn't lessened at all for you.

Were you around the boards long enough to know Peaches (Shantel)? She's not on here anymore, but I remmber her telling me she stopped taking Imuran because it made her "feel Crohnsie," despite the fact that it worked really well for her. I am not sure what she meant exactly, but I thought it was in reference to feeling super tired all the time. She switched to Remicade and seems to be doing very well on it. :)
 
Hey Marisa - I think I was reading an old thread where Peaches said that - thanks for reminding me. I've heard good stuff about Remicade and Humira, but I'm confused because when I first saw my current GI he said I wasn't a candidate for the biologics. I don't know what he meant by that - I was still mostly in shock trying to process having a flare after so long in remission so I didn't think to ask for clarification. Maybe because I have a brother who was dx'd with cancer (lymphoma)? (he's in remission)
 
Hmm...yeah, I would definitely ask the doc what makes you unfit as a candidate. It could have something to do with your brother having lymphoma. Though...my dad currently has melanoma and my mom has had breast cancer (in remission). But, I don't know a lot about lymphoma. Perhaps that's a riskier type of cancer. Either way, a dialogue is probably in order with your doc :) Keep us posted on what happens.
 
I came off methotrexate because it knocked me out for two straight days, and I was like a zombie the rest of the week. Azathioprine/6mp made me throw up but I was in full Crohns mode then so don't know if it made me more tired. The only thing that has woken me up has been getting into full remission with Humira. However, even now I still feel tired if I don't get enough B vitamins - empirical deduction by pattern matching rather than blood tests - which iirc are on the low side of normal whenever been tested. If I eat plenty of yeast extract/marmite then I'm brighter, less tired, and can work through normal peoples tiredness. Otherwise forget it.
 
I'm feeling exactly the same as you right now, although I'm not on any medication that can cause it. I'm tired all the time no matter what I do.

It's just weird because my colon is apparently in a bad state but I'm feeling more well than I ever have minus being so tired all the time. I get iron infusions when my iron levels get low but they seem to be fine at the moment, so who knows?

And I've just realised this post wasn't helpful at all.. but at least you're not the only one in the same boat.
 
I was so fatigued last week...I own a business and have two kids..I was wiped out last week. I thought OMG, if this continues I'll be in the hospital...I tried to get more sleep (if that was possible!) and I drank a ton of water and G2..that helped me some, and today I got my B12 shot...Not sure if it will work for you, but its a thought...We have to figure something that works for us...Good luck! Sue
 
Hey guys - thanks for the input/support.

I'm a goof - it was methotrexate that my GI wasn't going to treat me with, not the biologics. He said the cancer risk is real, but only silghtly higher than the cancer risk taking 6mp.

Last time my B12 was checked - Sept 09, when I was flaring - it was right in the middle of normal (775). GI said B12 shots wouldn't do diddly for me if my level is normal.

I'm nowhere near anemic.

Soooooo - my GI wants to recheck my thyroid, B12, and a fasting cortisol level to be sure the pred didn't screw up my adrenal glands. He said if all that came back normal he'd consider trying me on Humira, although he said it's hard to make a case for switching meds when my gut's under control. I told him flat out that I can't function in day to day activities and that's when he said he'd consider switching meds, but that he wasn't sure it would help.

My GI pointed out that when I decreased the 6mp from 75 to 50mg that my fatigue didn't improve (it's actually getting worse). So he said his option is that my fatigue isn't med induced but from the Crohn's itself.

I'm just so so soooooooooooooo frustrated - I sleep 8-10hrs a night, Drink tons of water, do yoga, follow a cardio/light resistance workout schedule, get sunshine, eat well, etc etc etc.

Sorry to whine - I know I should be thankful that my gut is under control... but it's hard when I seriously can't function.
 
Good luck inky, lets hope they find what's making you so tired! Though if dropping your dosage made you worse, would it be worth trying a higher dosage to see if that helps? And don't worry about moaning, I know exactly how you feel, a few weeks ago I was working part time and coming home and falling asleep for up to 2 hours before I was capable of doing anything!
 
Thanks Rebecca - the prob with the 6mp is that at 75mg my liver levels were getting pretty high (ast 220, alt 130), and going down to 50mg made my liver levels drop to almost normal. Argh.

And I just found out all the tests my GI want to do are going to cost $250. I don't have that, so I'm going to have to put them on hold.

So basically I'm back to square one.
 
Boo, Sabrina! I hope you can find a way to get that extra money so you can get the tests done in the near future. So sad to hear you're struggling to function on a day-to-day basis because of this fatigue. HUGS to you!
 
Aw, thanks for the hugs, Marisa :). I actually have family who would help me out with the money, but I'm not going to take it because all the tests my GI have ordered - except the fasting cortisol - have been done within the last 14months and were normal. My GI just ordered them because he didn't have anything else to offer me.
 
Sabrina..Is it everyday? Or does it come and go...Mine comes and goes...Somedays, I fall asleep at my desk! I think its the meds and the disease...Both stink...One day, I am going to steak that by line of yours! :) Sue
 
Hey Sue - so sorry you're dealing with fatigue, too. Mine's constant at this point. In the past it would come and go, but for the past couple months I've literally had to force myself to do anything. E.g. - I have to make myself get out of bed in the morning by reminding myself that my puppy needs to go outside for a walk. I have to set timers if I have appts that take me out of the house so I know when I have to start changing from my sweats into actual clothes, putting on makeup, etc. I have to write hyper-detailed to-do lists otherwise hours and hours will go by without me doing anything.

Gosh, I sound pathetic!!!!

I'll let you borrow my by-line anytime ;)
 
Aww, I understand where you are coming from. What about getting a 2nd opinion from another GI? I know that's probably not something that is ideal, but perhaps someone else may have some different insight? Maybe even different tests you could get.
 
Inky StinkY1 WOW! I just figured out how young you are! Girl, this is so wrong for a young person (for any of us for that matter!) to have this disease. How long you been on the 6mp? Does Humira make you tired too? I don't see you taking it...but is that an option? Sue
 
thanks ladies! Haven't been on Humira - that's what I wanted to try but my GI doesn't think it would help the fatigue 'cause my gut's mostly ok and he said that meds target the gut and not general malaise. Too tired to fight with him.

Plan at the moment is to try and hang in there until July - my husband's working full-time now and in July our brand new insurance can't deny me because of pre-existing stuff anymore. Then I'll max out my deductable and run every stinkin' test and try every stinkin' med until I find something that makes me feel human again!
 
I just noticed you are taking trazadone to help you sleep. Fatigue is listed as a side effect of it. Could you try tapering off to see if that makes a difference?
 
Hey Rebecca - this summer I decreased the trazodone from 100 to 50mg because I was sleeping too late into the morning. Late this summer I tried stopping it, but I would wake up so much in the night that I was right back to sleeping all morning because I wasn't sleeping at night... Maybe I should try stopping it again, but I'm kinda worried that would just totally screw up my sleep.
 
Can you not taper slower than that? Like down to 25mg for a bit (ie cutting your pill in half). Or try stopping but use something else like a herbal product to get you over the initial withdrawal phase. Did you notice any difference when you halved the dose even? I know that's a lot of questions but I'm just throwing ideas out there! To be honest I think that you still have inflammation somewhere and that's why you're so tired. When you say your gut's 'mostly OK', what do you mean exactly? And where is your Crohn's?
 

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