Advice from Anyone who deals with Humira...

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LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 9/8/2008 2:57 PM (GMT -7)   
I currently take Humira.  I was getting one shot every 2 weeks but about a month and a half ago we began 2 shots every 2 weeks.
 
I am at that point with my Crohns that I cannot even get out of bed some days.  I have been lucky enough to have the summer off from work with the help from my parents, but I go back in a week. They are great about the bathroom breaks and very understanding, but Im worried I wont be able to stay awake fora 40 hour week.  
 
A few days after I get my shot, I feel better for about 4-5 days at Most.  The remainder of the 2 weeks, I am MISERABLE.  I sleep almost all day and All night (with the exception of the pain that wakes me up to go to the bathroom).  My Crohns has always been in different areas of my Intestines.  This time, however, it is at the very top of my colon.  This means as soon as any waste passes through, I have to use the bathroom immediately or I sit in intense Pain.
 
I have Extreme body teperature issues.  I dont actually have a temperature though.  I go from being extremely Hot to so Cold that my whole body tenses up, so bad that I was laying in 100 degree weather with a blanket around me and was still cold.  Have any of you that take Humira had this Hot/Cold Issue??  I know my headaches are caused from the Humira, but the exhaustion and temps are not anything I have dealt with Before?? 
 
I am basically just wanting to know if this has to do with the Humira or if I need to worry that it may be something else.  The blood work says I am Not anemic, which was my first thought to being so tired.
 
Any Suggestion or anything else will Help Me.
 
Im just Tired of being so darn Tired!
 
Thanks!
 
Tracy

Loves & Always Smiles,
 
T. B.
 
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
23 year old Female
Crohn's diagnosed since age of 10
 
*Humira Shot bi-weekly since 11.07
 
*When Flared: 6mp and Prednisone... and 3 months on TPN/Picc Line
 
*Previous: Remicade (became allergic after 6 months, went into anaphylactic shock), Pentasa (also allergic to after months of taking), Flagyl, Asacol, Entocort, Hydrocortisone...
 
Tough Times dont Last...Tough People Do!!


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/8/2008 4:00 PM (GMT -7)   
Tracy, because of your diarrhea, you might want to get your doctor to check your vitamin B12 levels....
This alone can make you very tired. I'm assuming that you're off of TPN.. The hot/cold issues could been down to dehydration.
Just a thought honey!!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/8/2008 5:42 PM (GMT -7)   
Oh, Tracy. I'm sorry you're so unwell.

Is there a reason why you can't have your Humira shots weekly? That might help you achieve some more stability in your symptoms.

I know exactly what you mean about the intense pain if you can't access a toilet immediately, and I know, too, what you mean about not being able to get out of bed. I've no advice to offer you, hon, just lots of sympathy.

Ivy.
Co-Moderator Crohn's Forum.


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 9/8/2008 6:03 PM (GMT -7)   
I was going to ask about weekly shots, too, esp since it seems that might help offset that bad feeling around day 5.

I'm on weekly Humira right now and it's working very well for me.

mimik81
Regular Member


Date Joined Jan 2008
Total Posts : 88
   Posted 9/8/2008 7:06 PM (GMT -7)   
Just watch your side effects and please let you GI know. I ended up with drug induced lupus.... which started with pleurisy and the worst headache ever. My joints ache horribly, and my throat hurts. Just be aware of what's going on with your body. I knew something was wrong, but it took almost 2 months of going around and around with my GP, GI, and now rheumatologist.
Diagnosed with Crohn's for 13 Years
Currently on 75 mg Imuran

Tried prednisone, flagyl, pentasa, and Humira (developed drug-induced lupus and had to stop).


LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 9/8/2008 9:00 PM (GMT -7)   
Thank you to everyone. Because I am on a double dose, I cannot do it weekely. Unfortunately, one shot doesnt do enough for me, even if it is Every week.

I have another appt with my GI to go over the side effects to find out what else is going on.

Dehydration is a major problem we are working on.

Thank You
Loves & Always Smiles,
 
Tracy B.
 
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
23 year old Female
Crohn's diagnosed since age of 10 (1995)
 
*2 Humira Shots bi-weekly since 11.07
 
*When Flared: Humira or 6mp and Prednisone... and 3 months on TPN/Picc Line
 
*Previous: Remicade (became allergic after 6 months, went into anaphylactic shock), Pentasa (also allergic to after months of taking), Flagyl, Asacol, Entocort, Hydrocortisone...
 
**Tough Times dont Last...Tough People Do!!**


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 9/9/2008 6:09 AM (GMT -7)   
I believe that the hot/cold issues is pretty common for crohnnies taking any form of 6mp, imuran, entocort, etc. The fatigue is something else that comes with this disease. It's the most frustrating for me when my mind is able but the body screams NO. I am on weekly humira and I have experienced the symptoms you describe throughout remicade treatments (which I built antibodies to). For me, the Imuran is also a immune system suppressant, it lowers my normal body temperature so when I run a low grade fever it's hard to get an accurate reading. Plug the thermometer on a periodic basis throughout the day and I'd bet the time(s) that the fatigue really is getting to you is when your fever is on the rise. My two cents...hope it helps.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/9/2008 9:30 AM (GMT -7)   
How are you all getting Humira approved once weekly or 2 shots biweekly?  My doctors say they can't get it approved for more than one shot biweekly...neither my GI or rheumy can.  I also have about a week of feeling good after the injection and then a really bad week (other times, I have two full bad weeks, as if the shot didn't do anything).  I have also had the hot/cold issue lately, but just tapered off of the 6mp, so I don't know what's doing it.

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 9/9/2008 11:17 AM (GMT -7)   
Thanks Zenawp. I wish neither of us had to deal with this, but its good to hear from someone going through the same side effects. I have never had hot/cold issues with the 6mp, it only started with the Humira, however everyone is different. I was on a once - biWeekly shot, but it was doing nothing so my GI was the one who told me to go to 2 bi-weekly. Since one shot was doing nothing, he doubled it rather than give me one every week. If yours does help a little after the shot, I would push to get it once a week. If it doesnt do anything for you then 2 should definately. but like I posted before, my 2 shots at once only last the first week and by the 2nd Im back to feeling bad and waiting for the week to end to get another set of shots.
Loves & Always Smiles,
 
Tracy B.
 
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
23 year old Female
Crohn's diagnosed since age of 10 (1995)
 
*2 Humira Shots bi-weekly since 11.07
 
*When Flared: Humira or 6mp and Prednisone... and 3 months on TPN/Picc Line
 
*Previous: Remicade (became allergic after 6 months, went into anaphylactic shock), Pentasa (also allergic to after months of taking), Flagyl, Asacol, Entocort, Hydrocortisone...
 
**Tough Times dont Last...Tough People Do!!**


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/10/2008 10:56 AM (GMT -7)   
BuzyBum, look back at the threads on here about Cimzia...it may work for you if Humira didn't.  I was on a clinical trial for it, then switched to Humira and am now considering going back to Cimzia. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/10/2008 3:54 PM (GMT -7)   
BuzyBum, if you click on the "Resources" thread at the top of this forum, you'll find a "new meds" thread with information on Cimzia. I hope you'll find some good information there.

I suggest you start a new thread (click on "new topic") if you would like to discuss your concerns further. Remember, Tracy started this thread because she had concerns of her own, and it can be upsetting to find that one's thread has been "hijacked" by another member. I'm sure you didn't do this intentionally - I can see that you're new - but we do try to keep discussions on topic here.

Best wishes,

Ivy.
Co-Moderator Crohn's Forum.


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 9/10/2008 4:21 PM (GMT -7)   
I thought I was keeping it on topic. Sorry for asking!


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 9/10/2008 4:37 PM (GMT -7)   
I've deleted my posts, hope this fits in with your 'rules'

I wont be posting again, I found your post quite offensive.

Thanks!

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