Advice from Anyone who deals with Humira...

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

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.

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.

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.

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.

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.

I've deleted my posts, hope this fits in with your 'rules'

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

Thanks!