Extreme Tiredness

Tim641 · Oct 20, 2017

I've been on 75mg of Azathioprine for about 7 months now and lately I've been extremely tired 24/7 that waking up in the mornings is like the hardest thing ever. Today I woke up so late that I was 2 minutes from getting late to college which has never happened before. I just couldn't get my self out of bed and fell back to sleep. All I want to do is sleep throughout the entire day. This may sound really bizarre but I'll be having a dream and I'd be having stomach pains and then if wake up in the middle of the night and have to run to the bathroom and I just don't think Azathioprine is working that well for me. My doctor is thinking about changing my meds to infliximab but I'm just a little worried about how it'll affect me and how it'll be administered because I absolutely hate needles. I read online that it takes around 2-4 hours and so I'm probably gonna miss some lessons in college and I can't afford to miss any time cuz I've got exams coming up.
I just want to know if infliximab is worth it or not. I haven't been on any medication longer than a year because it either had a really bad side effect or it just wasn't working on me.

Has infliximab helped anyone go into remission?

Sophabulous · Oct 20, 2017

Hi there!

I can relate to this 100%, I’m due to start infliximab soon as Azathioprine has failed me. I’m always tired anyway, but just recently this has been a lot worse.

The mornings are the worst, I set 7-10 alarms, get up on the last one, brush my teeth and have to get back into bed for a few minutes to recover. I’m only 26 but I feel about 90!

I’m usually better once I’ve been up for an hour or so, but then the fatigue creeps back in as the day goes on. I almost always have to have a nap when I get home before I can shower. Washing my hair sometimes feels like climbing Everest and so doesn’t get done for days on end.

I’m hoping the infliximab will help me, earlier this year I was much better than this so I know there is the potential for improvement. I think it’s just part and parcel of a flare unfortunately, but I believe overall us IBD folks are always more fatigued than our healthy counterparts. It’s a really tough pill to swallow, I hate it and resent myself for not being up to doing things my friends and family don’t give a second thought about. It’s something people just can’t understand unless they’ve experienced it. I liken it to every day being like you’ve just had the flu. Sure you’re out of bed and able to function somewhat, but things just drain you very quickly.

If you are afraid of needles do you think maybe you could ask your doctor for Humira instead? I’ve been offered the choice of either as I believe they are very similar, and although I’m fine with needles I don’t fancy injecting myself nor a family member doing it for me. Maybe you would feel more in control if you could do this yourself in a place you feel comfortable and on your own terms rather than in Hospital? An injection is over in no time whereas the infusion will take hours as you mentioned.

Hope this helps!

Tim641 · Oct 20, 2017

Sophabulous said:
Hi there!

I can relate to this 100%, I’m due to start infliximab soon as Azathioprine has failed me. I’m always tired anyway, but just recently this has been a lot worse.

The mornings are the worst, I set 7-10 alarms, get up on the last one, brush my teeth and have to get back into bed for a few minutes to recover. I’m only 26 but I feel about 90!

I’m usually better once I’ve been up for an hour or so, but then the fatigue creeps back in as the day goes on. I almost always have to have a nap when I get home before I can shower. Washing my hair sometimes feels like climbing Everest and so doesn’t get done for days on end.

I’m hoping the infliximab will help me, earlier this year I was much better than this so I know there is the potential for improvement. I think it’s just part and parcel of a flare unfortunately, but I believe overall us IBD folks are always more fatigued than our healthy counterparts. It’s a really tough pill to swallow, I hate it and resent myself for not being up to doing things my friends and family don’t give a second thought about. It’s something people just can’t understand unless they’ve experienced it. I liken it to every day being like you’ve just had the flu. Sure you’re out of bed and able to function somewhat, but things just drain you very quickly.

If you are afraid of needles do you think maybe you could ask your doctor for Humira instead? I’ve been offered the choice of either as I believe they are very similar, and although I’m fine with needles I don’t fancy injecting myself nor a family member doing it for me. Maybe you would feel more in control if you could do this yourself in a place you feel comfortable and on your own terms rather than in Hospital? An injection is over in no time whereas the infusion will take hours as you mentioned.

Hope this helps!

Yes this definitely helps. It's nice to know that I'm not alone in this. I try and talk to my friends but it's not the same like you said because they haven't experienced what I've been through. I hope my doctor considers putting me on Humira rather than having to go to the hospital for infusions.
I hope you feel better soon and hopefully the tiredness goes away soon.

Sophabulous · Oct 20, 2017

You too, let us know how you are!

MaryCherub · Oct 20, 2017

I use to suffer terrible fatigue.

It only settled down when I got of the meds, and started to treat myself naturally.

If that is not an option for you, then the other best way to reduce fatigue is correct food combining for all your meals.

Guerrero · Oct 22, 2017

Tim641 said:
I've been on 75mg of Azathioprine for about 7 months now and lately I've been extremely tired 24/7 that waking up in the mornings is like the hardest thing ever. Today I woke up so late that I was 2 minutes from getting late to college which has never happened before. I just couldn't get my self out of bed and fell back to sleep. All I want to do is sleep throughout the entire day. This may sound really bizarre but I'll be having a dream and I'd be having stomach pains and then if wake up in the middle of the night and have to run to the bathroom and I just don't think Azathioprine is working that well for me. My doctor is thinking about changing my meds to infliximab but I'm just a little worried about how it'll affect me and how it'll be administered because I absolutely hate needles. I read online that it takes around 2-4 hours and so I'm probably gonna miss some lessons in college and I can't afford to miss any time cuz I've got exams coming up.
I just want to know if infliximab is worth it or not. I haven't been on any medication longer than a year because it either had a really bad side effect or it just wasn't working on me.

Has infliximab helped anyone go into remission?

Hi Tim 75 mg is a low dose of Azathioprin, I remember I was on 150mg...
Also why your doctor think you need to change therapy? is it because of endoscopic results or blood exams? If yes how bad are they?
Also have you been checking your iron levels? Usually in CD low levels of iron is the reason for fatigue, maybe you'd benefit from an Iron infusion. I need one every 2-3 months to feel ok.

Good luck with your college exams and take care

Tim641 · Oct 22, 2017

I was on 100mg of Azathioprine but I had really bad nausea and vomiting that I wouldn't be able to eat anything so it had to be lowered and I'm still always in pain and having diarrhoea as well as skin problems which is why he recommended that we may need to change therapy. I just had a blood test to check my iron levels so i should be getting the results of that soon in my next appointment so I'm basically just waiting.
2 weeks ago I had to get a lower back X-ray because it was always in pain and so my doctor thinks it could be sacroileitis (don't think I spelt that right) and so he thinks changing therapy would also help control my back pain.

Guerrero · Oct 23, 2017

Yes then considering all this I think it could be a good idea to change therapy.
If you affraid of needles, and don't have enough time for infliximab you should ask your doctor about Humira. It's still a biologic with a similar mechanism of action than Infliximab (anti tnf alpha), but you inject it at home by yourself, so it takes 3 minutes instead of 2-4 hours. My doctor gave me the choice between the two of them, and I chose Humira for similar reasons as yours.

Khalid Saeed · Oct 23, 2017

MaryCherub said:
I use to suffer terrible fatigue.

It only settled down when I got of the meds, and started to treat myself naturally.

If that is not an option for you, then the other best way to reduce fatigue is correct food combining for all your meals.

Hi Mary
Am interested of your natural treatment you mentioned.
Can you please explain in more details?
Thanks

Sucane1 · Oct 23, 2017

I’m super afraid of needles too and the thought of injecting myself is scarier than getting the Remicade infusions.

That being said I have been having lots of side effects from the Remicade, though based on the few replies I see here when I ask about it I must be one of those rare people. It appears very few others on here experience the side effects I’ve been having.

The Remicade infusions basically take half my day. They take about 3-4 hours to administer and then I’m exhausted afterwards from all the benadryl they give me. However, I find they are easy to schedule to fit my schedule. You could probably schedule your infusions around your classes.

I’ve also been told that after you have enough infusions without issue you can get your infusions at home (a nurse will come administer it - my insurance would prefer this because it’s a lower cost method). However because I have issues I still need to get them at the hospital facility.

Crispix73 · Oct 23, 2017

I used to be tired all the time. I had the same issue with struggling to get out of bed, and by mid afternoon I was absolutely exhausted. I just recently started Humira 4 weeks who, and I’m overall seeing positive results so far. I wouldn’t say I’m in remission yet, but I feel I’m heading that way. The fatigue is much better than it was, and everything else is improving with each.

I hope that you find skne relief soon.