Blood and Fatigue Question

[DJW]

I've been on Remicade for a year and this is new for me.

The last couple of days the fatigue has been worse than usual.

I had a bit of blood in the toilet this afternoon (red, not the dark foul smelling coffee grounds) and appears to be from lower down in the GI tract.

I've got a bit of abdominal pain.

Question:

Is it common to have occasional minor flares while on Remicade?
My thought is yes, but I'd like to hear the experience of others.

Thanks.

 

[Tuff]

After a year and a half on Remi, I just got a perianal fistula. I'm in denial. I have a scope scheduled in two weeks, so I'm going to wait and see. Maybe it will magically go away.
My fatigue always gets worse when I have a fistula. Do you think you could have one?
:ghug:

 

[DJW]

Thanks for the reply.

The blood was one time and I think it was probably from the stoma (in retrospect).
No fistula, no pain, nothing.

So problems can happen even on Remicade I guess.

Thanks again.

 

[Robrich]

Hey Djw you Better check your ESR, CRP levels for inflammation. The fatigue is worrisome.
Remicade doesn't work forever.
May need to increase dose or add combo therapy like AZA
Good luck

 

[DJW]

My blood was checked last week. I'll call tomorrow for the results.
I'm on Remicade and azathioprine.
Hadn't really thought that Remicade wouldn't work forever; makes sense. It's worked so well for me.

Fatigue is a constant but the last couple weeks have been terrible. Today's has been pretty good.

Thanks for replying.

 

[Robrich]

DJW I started Remicade in 1999. It worked like magic fistula and inflammation cleared right up.
I was so excited and relieved that finally after 35 years a colon resection and years of suffering they had finally figured out the disease and that monster was off my back.
Worked great for 10+ yrs. full remission no other drugs.
Then it stopped working. Very very heartbreaking. And the monster comes back tougher!
A good diet and stress free lifestyle and regular daily routine with sleep and exercise along with keeping your infusions regular to the day every 8 weeks will help it keep working.
Good luck

 

[Robrich]

DJW also take note of hemoglobin.
The fatigue is likely due to either anemia or inflammation.
Quite possible you lost significant blood and don't know it.

 

[DJW]

So true.

I've only been on it a year. The first drug that has ever worked this well, this long.

A small side note, I'm just finishing a 12 week CBT program to help get control of my anxietyand stress .
I'm so pleased with the results.

 

[DJW]

DJW also take note of hemoglobin.
The fatigue is likely due to either anemia or inflammation.
Quite possible you lost significant blood and don't know it.

Almost forgot:

The hemoglobin is good.
B12 is good
All based on most recent blood work.
The hematologist (had an appointment last week) suspects my iron is low. I'll get that result ttomorrow also.

I'll let you know.

 

[Robrich]

Good for you for doing that.
This disease impels us take good total care of ourselves and be in tune with our bodies
I am 66 and in many ways I am healthier than many of my contemporaries. quite a few didn't make it this far.
I am thankful for every day I wake up and feel good and make it through the day like a "normal" person.

 

[ronroush7]

I don't know it it is true but I thought I hsf read if it I'd foul smelling thrtr I'd the possibility of c diff. Have you ever been tested? I have been tested more than once and it has been negative so fsr.☺

 

[DJW]

I've even had a full workup with the hematologist (full bloods, bone marrow biopsy, scans, and yearly follow-ups) to rule out any blood/bone marrow cancers that may be causing fatigue.

I'm sure I'll be going through that again sometime down the road.

 

[DJW]

I don't know it it is true but I thought I hsf read if it I'd foul smelling thrtr I'd the possibility of c diff. Have you ever been tested? I have been tested more than once and it has been negative so fsr.☺

I'm clean thankfully.

 

[ronroush7]

Great.

 

[my little penguin]

Ds experience with remicade and humira
Mini flares and fatigue can happen
Sometimes just increasing the dose and or the frequency of infusions helps
Fwiw most kids never make it out 8 weeks they burn through the meds
My kiddo needed remi every 6 weeks at 7.5 mg

Same with humira
Increased frequency and added meds
Did they test trough levels and antibodies?
That way you know if your burning through the med or not


Good luck

 

[Tuff]

Stress always makes me feel worse. I try to maintain a regular routine with meals and sleeping. I'm still sleeping 9-10 hours a night. Long walks and some weight lifting to keep me in shape. Strangely, my fistula has already disappeared. I hope this is not a precursor for more to come. I'm already on a six week cycle for Remicade. Just the thought of another major flare is making me depressed.

 

[DJW]

So I am anemic. I start iron supplements today.
We shall see.