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Remicade and Fatigue

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Crohn's Disease
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Posted 7/6/2013 8:19 AM (GMT 0)
Hello fellow Crohn-ies (ah, 3AM attempt at being clever & cute)

This is my first time posting here or on any forum for support regarding Crohn's or any illness, as such I was about to include my whole getting diagnosed story. I just ended up feeling long winded & whiney, maybe at some future date (once I feel more comfortable) I'll decide to post about all or some of it. Sufficite to say, it took a long time & was quite difficult, I know that's not abnormal.

So, they diagnosed Crohn's & Crohn's related arthritis (which is very much like Ruematoid Arthritis, just in conjunction with Crohn's). Remicade was recommended for both conditions, in an effort to get them under control as quickly as possible, and to enable the eventual weening of 10mg daily of Prednisone (sometimes more as symptoms dictated) & 1000mg 4x daily of Pentasa.

Started at 10mg/5lbs of Remicade with infusions every 8 weeks (done in the same building as my GI & Ruemotologist, very convienent), moved to every 6 weeks after about 6 months, it's been another year since then. I'm off Pentasa & steadly reducing Prednisone, now at 3mg daily. By all accounts (bloodwork, follow up MRI, and exams) it's all good. My specific immflamatory symptoms have improved & I'm thrilled about that, however...

I am absolutely exhausted after the infusions, that day & for the next week (maybe even a little longer). Has anyone else had a similar experience? Any advise or suggestions?

Does anyone else have tests & specific symptoms improved, but still feels generally unwell, having trouble doing stuff, etc?

Thanks so much for your precious usable time!
Wishing you good health or atleast plenty of good days, as well as Drs, friends & family, that believe you, and are understanding & supportive.

-32, Female, Crohn's & Crohn's related arthritis (amongst other things) & grateful for people who know what its like, to talk to, and to listen to.
Posted 7/6/2013 11:27 AM (GMT 0)
If I've got the chronology right, you were on Pred for a year and a half at various dosages? Okay, I was Pred for a similar length of time, not quite continuously (I managed to get off it a few times, but never for very long - the longest I managed was two months, I think). But if you have been on Pred for a long time, you will feel like a wreck upon coming off it. There will be intense fatigue. Your adrenal glands, which produce cortisol, will have been suppressed for a very long time, and it can take up to a year for them to waken up fully after being on steroids.

The Remicade could be playing a part as well; many people are tired for a day or two after the infusion. But in general I suspect you are suffering from heavy immunesuppression, creating the immense fatigue. Get off the Pred entirely. Hopefully, after a few months of being off Pred, the tiredness will begin to improve. I'm presuming your iron and B12 levels were checked during the bloodwork? If not get a blood test done for those.

My situation is rather different to yours, but I can relate to the tiredness and not feeling great. I had major surgery earlier on this year, which was meant to fix me up. And in a way it did. But I've been knackered nearly all the time and developed a weird, sensitive skin issue. I really think it was down to all the meds I was on, in particular Pred. I do feel a bit less tired than I did a month ago, but it's a long and slow process... :-/
Posted 7/6/2013 11:48 AM (GMT 0)
Thanks so much for the answer & support.
Just to clarify...
I've been on various doses of Prednisone for years before the Crohn's Diagnosis (for asthma, the joints, and a non GI's hunch that it might be Crohn's --especially knowing my father also has Crohn's)
It's the Remicade that I've been on for a year & a half, less than two months after the official diagnosis.

My iron, B12, & VitD are chronically low, but I take the supplements as advised. I also always seem to have atleast mild anemia ( but it seems that I've had that ever since I was young & started feeling sick, which was actually year before my symptoms looked specifically audoimmune & Crohn's-y (which is one of my words used to describe these things, especially when no other words will do).

I hope everyone here can get used to my long posts & my random asides (usually in parentacies or double dashes).

Thanks again. Wishing everyone a low Crohn's-y day.
-Nicole
Posted 7/6/2013 1:39 PM (GMT 0)
Hi Nicole,

Welcome to Healingwell! I don't have quite the debilitating fatigue you do after Remicade, but I can certainly empathize with the general sense of malaise, even with bloodwork coming back normal. It's quite frustrating. Your comments in your second post give some hints into the fatigue though, as you note you have chronically low iron, B12, and VitD. Being a Crohnie, your body may be having a hard time absorbing some of the supplements (assuming you're taking pills). Do you take your iron pill with Vitamin C (e.g., orange juice)? This really helps with absorption. You may also want to ask your doc (GI, PCP) about getting B12 shots instead of taking pills if you're not already doing that as that is a much better way to get B12 into your system. Also, how much VitD are you taking a day?

Finally, diet and exercise can help with fatigue, if you are able to make changes. I'm not sure if you are on a restricted diet or are able to exercise, but the exercise is especially helpful, even if it's just going for a walk around the neighborhood. Somedays I really hard for me to get off the couch but if I can just get myself to the pool, I feel much better later for being able to swim.
Posted 7/6/2013 9:18 PM (GMT 0)
Too tired to post much, but...

Iron transfusions will sort your anaemia. You might struggle getting a doctor to agree to do it if your anaemia is not severe, but it's worth a try, given that supplements don't appear to have resolved it. Similarly, B12 injections are far more effective than oral supplements.

But I still suspect it's a combination of illness and medications causing most of the fatigue. Still, it doesn't hurt to pay attention to diet and exercise and trying to bring your iron, B12 and Vit D levels up to normal. But Pred is a horrendous drug. It's not at all psychologically addictive, but your body becomes tolerant to it and that's when Pred-dependency sets in: you can't get off it without withdrawal symptoms kicking in, such as severe fatigue, weakness, depression, etc.

I found out the above the hard way and as much as I would like to blame my doctors for keeping me on steroids for too long, I can't really. I got them from different places and different doctors, so no one doctor prescribed me more than a single course of Pred. I did know what I was doing, but I also knew I didn't want a bag! But I didn't delay that eventual fate anyway.

The moral of the story... just, I dunno, get off Pred if it's the last thing you do.
Posted 7/10/2013 6:08 PM (GMT 0)
An update...

Saw my Ruemotologist Monday, she is the one responsible for the Prednisone. While she is all about my getting off of it, she just wants me to wean very slowly. I'm down to 3mg for a month already, another month or two & down to 2mg, so assuming everything works perfectly I'll be done with them for good in about 8 months... Sounds crazy, but I get her reasoning...
Years ago I was on a high dose while in the hospital for pneumonia (sounds counter intuative, but the immflamation had been as much a problem as the fluid) & reducing it too fast resulted in my having to be stuck in the hospital for an extra week. (3 weeks in that one hospital room made me nuts.)

I tend to be very skeptical with Drs --as in I usually listen to everything they say, then decide what I think I should do given the advise & info they've given-- but I do trust her & don't really see anyway around going so slow.

I do take the high dose Vit D gelcap once a week which does help & do have the B12 injections, but I'll look into the other supliments & suggestions you made.

I appreciate all the time & thought you put in, so I wanted to answer & update you.

Additional note: Yesterday I was put on antibiotic for a sinus infection (I didn't even realize I'd been running a fever & was obviously fighting off something additional for a almost a week). It doesn't change how beat I am after a treatment, or anything else I asked about. It does mean that this particular time, that I was feeling extra beat for that second week after is now accounted for & is actually something that was decisive & should be easily resolved! (How often can most of us say that? :-)
-Nicole
Posted 7/11/2013 6:53 PM (GMT 0)
I sympathize with you. I look so forward to getting the Remicade because the week before it's due, I am on the go. But once I get it, I could sleep for at least 2 days straight! They give me benadryl and prednisone before the infusion so I don't have a reaction, and the benadryl knocks me out for the day, and the prednisone makes me so hungry I could eat a side of beef! Luckily I've been able to get Saturday appointments so I can sleep for the weekend before returning to work. My iron is also low, and I go for the B12 injections, and take the 'Proferrin' iron supplements which don't bother my stomach as much as the other iron. Apparently it is Heme iron, which is absorbed better by the body. I also take vitamin D drops. I have also found that sitting in the sun for 1/2 hour or so at the end  of the day when the sun is not so hot (5-6 pm) makes me feel better. That way I get the vitamin D the natural way. I also found going to the tanning salon for 5 minutes every so often when I can't get the sun gives me such a boost of energy the next day. Obviously not for everyone, but it works for me.

You have to be postive, because positivity helps. I always tell myself 'tomorrow will be a better day'. I hope you have an understanding husband and or family to back you up. That makes all the difference. God bless my husband! He is so patient, he never complains when I need a nap before making dinner because my work day has just wiped me out. I hope you have a good support system as well.

Good luck

Diagnosed 19 years ago, the same year my Dad passed away.

5 surgeries, too many past drugs to list, presently just on Remicade and Imuran.

I won't let Crohn's win!

I have Crohn's, it doesn't have me!

 

Posted 7/13/2013 4:05 AM (GMT 0)
Hello... so i just wanted to wrte in because i have been on remicade for almost two years... i recieved my treatment today and i dont want to get off the couch... ths will last for the weekend and by mondya i am better... i hope it gets better for you
Posted 7/13/2013 7:04 AM (GMT 0)
Percy36 & CheerPinky,
Thanks for your replies. It does make me feel better to know that it's not unusual to feel zonked after a treatment. Just so you don't feel alone I also feel like I could inhale an entire buffet immediately after a treatment! (Which feels crazy, because I have narrowing in my small intestine not very far from my stomach, so when I eat I get full very fast. I end up eating small amounts more often --which is my normal solution-- so I'd call it VERY often after a treatment.) It's pretty much ALL sleeping & eating (for me it's about a week after).

It's cute my husband (who had generally been the picture of patience with this whole, pre diagnosis when Drs thought I was a head case, through all the testing a bunch of times, & years of Prednisone which totally made me act like a crazy person, & all the other stuff, Crohn's, Crohn's arthritis, etc. thing) comes home from work on the day of a treatment, having gone to the supermarket to grab me all of my faves (which is often things that just aren't irritating my tummy), puts everything away, makes dinner, then wakes me so gently to ask if I want to wake up & eat. I feel very lucky cause it'd be just as easy for him to get frustrated by what I can't do & by how all of it makes a 'normal' life very complicated and somewhat unlikely. It seems like even if he gets frustrated, he thinks if it is tough on him it must be worse for me, & takes the energy many significant others might use complaining & puts it toward trying to help me feel better & when that's not possible he tries to cheer me up or makes sure that I can have enough fun or something to laugh about enough to forget about symptoms, meds, etc., even if its just for a moment!

I wish for you, people who support you as well as I feel I am supported & many of those moments I mentioned (when you can forget about all the tough stuff because there is some good stuff going on).

I also wish you a big yummy dinner (that you didn't have to cook) on the evening after your next treatment.

-You don't LOOK sick! (Nicole)
Posted 7/14/2013 6:16 PM (GMT 0)
You don't LOOK sick!,
Communicate the fatigue to your GI they can prescribe B-12 shots. I myself slept after the infusions, I also worked night shift. I purchased B 12 vitamins and they helped. Cheap and easy. I also got liquid B 12 that was stronger, it works better. but shots are the best answer.

I had side effects from Remicade and stopped using it a year ago. 40 cm later I still have issues.

T
Posted 7/14/2013 6:49 PM (GMT 0)
QuestionEverything,
Love your name by the way. Thanks for the input, I used to get B12 when I was a teen (long before they were even close to diagnosing me). I can easily see using them again, I'll mention it to my Dr.

I'm sorry to hear you haven't been doing very well & wish for you some positive resolution and at the very least, as many low symptom days as possible.

Thanks for replying,
You don't LOOK sick! (Nicole)
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