Fatigue hit me like a brick 6MP

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Terriernut

Terriernut

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Woah...been 3 weeks on 6mp. First blood test was Friday morning, no results yet. Today at work 2pm sharp, overwhelming fatigue. Like someone give me toothpicks to keep my eyes open fatigue.

Other than a few headaches here and there, I seem to be fine. Dreams are interesting. Now if only Johnny Depp would visit it in them......sigh.

Is the fatigue going to pass?
 
Misty,

I started 6MP as I was recovering from surgery, so I don't really have a good sense of how tired it made me in the beginning compared to now (I attribute most of my exhaustion to the surgery, but the 6MP could be playing a role, too). I'm definitely still lacking the energy I used to have, so I try to get as much sleep as possible. It also helps me to keep eating throughout the day so that I don't have the up-and-down energy between meals.

Let me know if you notice an improvement soon! Is your doctor monitoring your bloodwork on 6MP?
 
No, the Dr wasnt monitoring my blood, so I rang the IBD nurse and SHE sorted that out. My first blood test was on Friday, so no results yet.

I do 'graze' through the day. If I dont have much food I eat saltines at the very least. (I dont get lunch at work...not allowed, so I eat bits as I can)

How long has it been since your surgery? And what type surgery? Resection?

I hope this fatigue passes for you!
 
Your Dr wasn't checking your bloods on 6mp!! That is just disgusting.
I'm glad you got your IBD nurse to check them for you.

After i'd been on 6mp 4 months(75mg) my WBC count kept dropping.It dropped to 2.8.
I tried to cope with the fatigue,headaches etc as slowly 6mp got the Crohn's under control.
All of the side affects got worse the longer i took 6mp.Once my white blood count was at an unsafe level i didn't take it again.

When i first went on immunosuppression i went to my GP to sort out having regular blood tests.She asked ME why i needed them!! Like yourself i got the IBD nurse to monitor for me.I wonder how some of these Dr's pass medical exams.
 
Yup...no blood tests ordered or spoken of! If it wasnt for this forum, I wouldnt have known any better!

I am also feeling like I'm coming down with something all the time! But I'm not getting sick. Just the constant feeling of like something is just coming on.

6MP may not work for me. But we'll see what the blood tests say. I see alot of folks do so well on it! Alot of them say this passes. Fingers crossed that it does for me!
 
My surgery was at the end of August, and I'm 8 weeks post-op. I went to frisbee practice for the first time today, which felt great! I had a laparoscopic ileocecal resection.

My grazing usually consists of crackers, too, but sometimes I have time to make mini-meals or smoothies. I'm also supposed to drink Ensure, so I sip on that throughout the day.

That's frustrating that she doctor wasn't checking your bloodwork -- mine checks routinely for liver enzymes, CBC, CRP, and sed rate. He planned on doing labs at 2, 4, and 8 weeks, then every 3 months after that. After 4 weeks, though, my white counts got really low, so he decreased my dose and checked bloods every week until they came back up. But I'm definitely glad you finally got a blood test! I hope the results are positive.

Just for reference, I was on 50mg of 6MP, but my doctor switched me to doing 50mg on Monday/Wednesday/Friday, and 37.5mg on Sunday/Tuesday/Thursday/Saturday because of my low white counts. It seems to be working so far! If your white counts are low, your doctor should definitely adjust your dose, even if it's a wacky schedule like mine. Good luck!
 
Crossing my fingers that the feeling your coming down with something passes and passes quickly.

Keep us posted on the blood test results. Hoping all looks good for ya.
 
I can't believe your doc didn't sort bloods out for you on 6MP. I would bring it up with him when you se him next. Thank goodness for IBD nurses...they must get so sick of tidying up other peoples omissions but they always do so without complaining!
You should have bfc check but also liver function and renal function. Most common problems is low white count and liver irritation.

I hope your fatigue settles soon...you could always try a firework in Stans bag if not..that'll perk you up!!
 
Yeah it's irresponsible they didnt test your blood before and every other week in the beginning as you could have got liver problems, pancreatitis, or long term: lymphoma.
 
Indeed, thank goodness for IBD nurses!! And my next GI appt is the end of JANUARY by the way!

I didnt take my pill today. I 'forgot'. Still awaiting test results of the first bloods taken on Friday last. So, I'll ring the IBD nurse tomorrow. Hopefully I'll have the results then.

Still really tired. My pred was dropped to 5mg today.
 
I usually do get tired when tapering as well. But this is a drag my ass through the day, someone poke me with a stick to check if I'm alive tired. Thats not a pred taper tired unfortunately.

I also forgot to mention my liver is crap anyway...something inherited from my dad. Oh well. We will see tomorrow!
 
Blood results were good. IBD nurse says to keep going.

Anyone try to take 6mp with dinner (say 7pm) to help with fatigue? Will that help me to keep my eyes open the next day as I'd be sleeping through the worst effects?
:sign0085:
 
I take 6MP right before I go to sleep -- I think it really helps. My doctor said to take it on an empty stomach, though, so either do it before dinner or wait a while after you eat.

I'm glad your blood results were okay!
 
My doctor said to take it with food and my prednisone in the morning.
Maybe they should counteract eachother but the same thing happens. At around 2-4 I get exhausted. Then I hit around 10pm and I can't fall asleep. Even before tapering from the prednisone I felt this way. Maybe I should start taking it at night like someone mentioned.
 
Thank you all. Yes, I think I'll take it tonight and see what happens. Trying to work full time and being that tired just wont work for me!
 
Taking 6MP at night helps, just like it does for those of you on Aza. It helps, but it doesnt 'fix' it. Still tired. Still dragging.

Now off pred..(need to change my sig line) and the cramping and big D are back with a vengeance as well. Grrrrrr.

Next blood test due Friday again.

Cut myself on a tin last week, not healing and now its bruised like I punched someone. Sadly I didnt punch anyone. Good grief, what happens if you get a pimple on your face with this stuff....a black eye??? I'm kidding! Cant be that bad!!! If it is...I'll just say " you should see the other guy!! "
Misty
 
Now have a lovely rash on my right wrist. Cant say it's due to sun here in England! But, thats what it seems like. I'm sensitive to the sun, and this is what it looks like.

Fatigue, still a problem. Headaches, yup. Right side. Dont go away without paracetamol.

Right side back pain. What the heck?????
 
I'm on 6MP since early September. The fatigue is pretty debilitating at times. Dosage was upped on me 5 weeks ago (to 75mg daily) and I literally cannot keep my eyes open. I also take it at night. I'm hoping it will pass, since this is when my GI said Id probably be "feeling it" the worst. Hope you are feeling a bit better since your last post!
 
Yeah I am also on 6MP and i have the hardest time staying awake, I definitley have to take ine at night which I tend to usually sleep off but it does follow me into the day time. It sucks!
 
I'm still on 50mg, but I'm splitting the dose 25mg mornings, 25mg at night. It helps. But I'm still really knackered. Not good when you work full time!
 
Just saw this thread, Misty. I don't know how you do it---working full time, offering up advice and insight on the forum, and all the other things you likely are busy doing...and fighting the wretched fatigue and D.

Are you going back on Pred any time soon?

Get lots of rest...even though I know you won't!

Sending you big energizing hugs,

Kismet
 
Imuran makes me feel tired and just like I am coming down with flu or something, I have aches just about all over my body, I have ony been on it a week as I am weening off Pred as it doesn't stop me bleeding.

I started on 50 mg but up to 100 now, doctor wants me on 150 next month, will I get used to it?
 
Awwwww! Thank you Kismet!!! I dont do much outside working and coming home! I have a treadmill, and am trying to get back into shape. I dont have a social life much, because it costs too much!!

I dont do much else at all frankly, I'd like to win the lottery and forget working. As for the big D...with Stan who cares?! Truly life is better with Stan.
 
lifesover said:
Imuran makes me feel tired and just like I am coming down with flu or something, I have aches just about all over my body, I have ony been on it a week as I am weening off Pred as it doesn't stop me bleeding.

I started on 50 mg but up to 100 now, doctor wants me on 150 next month, will I get used to it?
Click to expand...

Have you had your bloods checked before they started you? How about now. It sounds like they are giving you too much too fast!!!! Most people start at 50mg, then 75mg, then 100mg over a longer period of time. Just to insure that you can tolerate the drug. Split the dose as well. Have a good nose thru the Imuran forum, it's very helpful. And then get on the phone to the IBD nurse if you've got one.
Good luck!!!!
:hug:
 
Misty, second week of aza, first blood test next monday and yup - knackered!

started on 100mg the first week (2pills) and up to 4 last saturday and yes I constantly feel like I'm about to come down with something, plus stomach digestion not happy and have had tingling in my back like I'm about to get Shingles again - in fact last time I felt this knackered was just before Shingles came out, so keeping a close eye on that. Coped last week, full dose knocking me for six and lack of appetite is not helping!!!

Have you asked GP/GI/Nurse about taking at night, splitting dose - having to push myself to keep going with full dose to the end of the week, when half was ok. Also not sure why he went straight to aza as don't seem to be nearly as bad as some of you, only just been diagnosed, only one period of issues, whereas lots seem to have tried all sorts before getting to aza, perhaps cos its expensive or is that my cynical side coming through!

hope we both get some energy soon!
 
Crunch...I split my dose, and it has helped tremendously. I'm only 50% knackered now! 25mg morning, 25mg night.

Not to be nosy...but good grief your dosage sounds very, very high!
 
weight related, so 2mg per kilo, others could be on 1mg per kilo...

see how I go, very tempting to go back to 2 a day as didn't seem to cause a problem, but that could be just cos was first week and would have built up to second week. Very lucky that boss and colleagues are supportive and have a job where I plan my workload so not been too much of a problem when it takes me ages to get going in the morning...

might ask about splitting dose, though was told to take all in the morning, but hard to force something in sometimes so I can take pills after! no idea what I'm going to do about lunch!
 
Alot of folks take their AZA at night, so they sleep through the worst of the effects. Do you have an IBD nurse you could ring?

And as for your question about being put on Aza, it's to keep you in remission for as long as possible. Did you have your bloods checked before you started it? And are you scheduled for weekly or bi weekly blood tests while you are on it??
 
yup book for fortnightly tests, no idea if one was done beforehand but last blood test was 6 months ago, so unlikely!
 
Crunch, you need to be tested BEFORE starting Aza or 6mp! TPMT needs to be tested to make sure your liver can tolerate the drug!

Then you need to be tested weekly or bi weekly to make sure your WBC, etc doesnt get too low.

Please ring your IBD nurse or GI office to get tested ASAP.
 

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