Started Humira

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Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/28/2009 4:02 PM (GMT -7)   
Hi everyone. Just thought I'd let you know that I did the 4 shots of Humira yesterday afternoon. It wasn't too bad really, just some stinging for a few seconds and that's it. No injection site reaction.

Unfortunately I had black stools on Thursday and yesterday. Back to brown stools today after bumping my pred to 25mg. This is really upsetting as I just had a transfusion less than two weeks ago. Today I'm really tired again, pale and weak. I really do not want to have to go for another blood transfusion. I was actually feeling some energy on Wednesday too....

That's about it for now. Thanks for your support everyone.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/28/2009 4:14 PM (GMT -7)   
Does anyone know at what point someone should go to the ER with bleeding? I don't feel like I'm unstable and I don't think I'm bleeding anymore but I was just wondering.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 25mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/28/2009 6:43 PM (GMT -7)   
Basically what Kasper said. I'm sorry you're still bleeding. It's so frustrating...mine didn't stop for a couple of months after starting higher doses of prednisone and the humira shots. Good luck with all of it. I hope the humira works for you.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/28/2009 8:58 PM (GMT -7)   
Thanks for the good thoughts Kasper and LMills. Sure hope it's going to work.

Kasper, I can't take iron in any form it kills my gut. Gives me cramps and D rather than C......
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 25mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/28/2009 10:11 PM (GMT -7)   
It took at least a month for my Humira to kick in. I also had very dark stools (lots of inflamation in small intestine) and abdominal pain, but once the Humira did it's thing, it went away.

Have you tried chelated iron pills? They're supposed to be really easy on the intestines.

Good luck!

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/1/2009 10:18 AM (GMT -7)   
Thanks spooky! You know I've tried so many different types of iron preparations that have set my gut back that I've decided to just forego them and concentrate on getting the inflammation under control and let the hemoglobin regulate itself after that.

Thanks for the suggestion though.

Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 25mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 3/1/2009 11:02 AM (GMT -7)   

Hi Rider,

I'm sorry to hear that you are still having issues with bleeding.  When do you have a cbc done again?  Lets hope that if you require another blood transfusion it will be the last for a very long time.  Are you taking liquid folic acid while on MTX?  This helps to form red blood cells, works great along with an iron infusion, but I know you already told me once that that didn't agree with you.  I was on Humira for a couple of months before I noticed any changes, but maybe it will work faster for you, lets hope!

Keep smiling,

Julia

 


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/1/2009 12:01 PM (GMT -7)   
Hi Julia! Actually I just updated my signature. My GI felt that the MTX was doing nothing for me after 16 weeks so he told me to just stop it. If anything, I will start 6MP again since that did something for me at least, but right now I'm just on the Humira and prednisone. Yes, I was taking 1mg of folic acid with the MTX...

My next CBC is a week tomorrow. Today seems to be better than yesterday....Thanks for checking in on me. Hope you're having a good Sunday.

Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 25mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


AmyG
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/2/2009 9:46 AM (GMT -7)   
Hey Humira users, are any of you experiencing intense hot flashes with the Humira? I am a 48 year old woman, diagnosed with UC 21 years ago (March 1988). I have had hot flashes off and on for several years, but nothing compared to the flashes I have been experiencing for the past two months. A "flash" occurs many times throughout the day and the skin on my back literally feels as though it is burning, like with a sun burn. Over the years I have gone through just about every medicinal treatment available for UC. I began Humira in Oct of 2008. At my age it is hard to tell if these intense burns are from the Humira or menopausal.

AmyG
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/2/2009 9:48 AM (GMT -7)   
I didn't mean to post a red frowny face. I'm just learning this program and am not quite sure how I did that!

hsmom
Regular Member


Date Joined Oct 2004
Total Posts : 35
   Posted 3/2/2009 10:28 AM (GMT -7)   
I'm glad I am not the only one. I am 53 so have had hot flashes in the past but ususally just at night. But since starting on the Humira I had them all throughout the day. They seem to be getting less frequent now. I have only done the 4 shots and the follow up 2 shots so maybe I will get them less as it goes along.
AmyG how long have you been on Humira?

AmyG
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/2/2009 11:15 AM (GMT -7)   
I have been on the Humira since October. I didn't really notice any hot flashes until right around Christmas, but had a tremendous amount of muscle and joint pain. The pain is getting better, but now I have the hot flashes. I find one of the frustrating issues with UC is trying to determine what is a result of the condition itself and what is the result of medication! Plus the fact that I am heading near 50, could some symptoms just simply be menopausal.
Diagnosed with UC in March of 1988, I have been on just about every medicinal treatment available through the years. Everything from Azulphidine, Cyclosporine, Asacal, Colazol, Immuran, Methotrexate, and everybody's favorite, Prednizone (yuck!).

I am currently on Humira and am in remission, although experiencing some muscle and joint pain.

I am very thankful for the advances in medication and better understanding of how the immune system effects this condition. There were not too many answers or treatment options available in 1988. We've come a long way!


colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/2/2009 11:17 AM (GMT -7)   
Hi everyone

I am new to all this and live in London. I was on Humira for about 6 months last year and had mixed success. Have now had it stopped and am on Modulen to see if it will sort me out

Humira seems to be very successfull for some people so I would urge you to keep going but take note of any sudden

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/8/2009 6:52 PM (GMT -7)   
Week 1 on Humira. No bad reactions or side effects. Maybe a bit more tired but my hemoglobin is 10 with non existent ferritin so that could be why. Been pretty weak, I'm sure it's from the low iron/hemoglobin plus lost a couple pounds two weeks ago when I bled.

Cut my pred by 2.5 mg this week. My only abdominal symptom (as usual) is some gas and bloating, although I think it's gotten better as the week has gone on. Weight stable at about 130, no noticeable bleeding.

So SEEM to be holding my own, although the last few months my gut has felt ok yet I've been bleeding slowly. Looking forward to my next injection on Friday, really!
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 22.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 3/8/2009 8:03 PM (GMT -7)   
I get so nervous with every injection (had one yesterday), even though I've been getting them since July. I had a couple bad allergic reactions on Remicade, which I'm sure is the reason it scares me. But, I know that Humira helps me. My crohn's is much better than a year ago, with the exception of fatigue. I just haven't been able to shake that.

Rider Fan, can you tolerate iron infusions? I got one (actually a series of four) a month or two after starting Humira, and my ferritin shot up to 300. First time an iron infusion ever did that (usually is just normalized my hemoglobin), so the Humira was definitely the reason it took so well.

AmyG
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/9/2009 6:55 AM (GMT -7)   
RiderFan, just wanted to say hang in there. I can assure you there is life after anemia! Hope your humira works well for you and puts you in remission. Get strong.
Diagnosed with UC in March of 1988, I have been on just about every medicinal treatment available through the years. Everything from Azulphidine, Cyclosporine, Asacal, Colazol, Immuran, Methotrexate, to everybody's favorite, Prednizone (yuck!).

I am currently on Humira and am in remission, although experiencing some muscle and joint pain.

I am very thankful for the advances in medication and better understanding of how the immune system effects this condition. There were not too many answers or treatment options available in 1988. We've come a long way!


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/9/2009 8:24 AM (GMT -7)   
Thanks Spooky and Amy! Yes, I will hang in there, doing my best....

I have had a couple iron infusions, called Venofer, but i don't think they agree with me. They make my blood pressure drop (its about 100/60 to begin with) and wipe me out for a day or two. I passed out after my first one, when they gave me 300ml, really freaked out the nurses. The second time I took 150ml and didn't pass out but felt pretty bad after. It's really unfortunate.....but bottom line I think is if I stop the blood loss it should come back, just maybe a bit slower without the iron.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 22.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 3/10/2009 6:51 AM (GMT -7)   
Hi Rider,

I'm so glad to hear the humira is agreeing with you. It can take a couple of months to start seeing changes in your symptoms, but it sounds like you are on the road to recovery. Good for you! Cross our fingers that it heals your GI bleed.

All the best,
Julia
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