Need advice from Humira users ...and Pred users!(and updates!)

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SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/20/2010 6:17 AM (GMT -7)   
So as you may know, I was in the hospital for around 5 days a few weeks ago, and all upset about being on the prednisone.  I have to say, its been such a positive experience as opposed to last time when it left me all depressed.  I've been more productive these past 2 weeks than I have all year.  The only downside is that I'm averaging around 2-3 hours of sleep a night because once I wake up I can't go back to sleep because my mind is too hyper.  My face isn't too poofy yet but honestly, I've been more happy than I have in awhile so I don't even care if it happens because it's just temporary.  There are worse things than looking fat for a short period of time!  (Plus ive been really good and havent been using salt at all, which is hard for me because i used to be very heavy handed with it!)
 
Does anyone have suggestions as to the weak leg thing the prednisone can give you?  I haven't been able to work out since the hospital between the weak feeling legs and my woozy head from the lack of sleep.  Even though I've been feeling a lot better, it's frustrating that my mind is all alert and active and hyper but physically my body is exhausted!
 
And in other news, Humira.  It seems like it works for a lot of people.  My GI is thinking of having me switch to it.  I currently use 6-MP but I can never up my dosage because my liver functions always go all out of whack (I think my crohns would be more under control if I could go back to a pill and a half or 2 pills, but ya know, the liver is important too...)  I would love to go on Humira since I suck at swallowing pills and would much rather give myself injections.  (My doctor gave me a new pill to take in addition to the 6mp, Lialda, but I'm supposed to take it 4 times a day and theyre HUGE! So I haven't started yet...)
 
The problem?  All the side effects sound scary...cancer?!  The only reason why I'm hesitant and paranoid is because my grandma died a few years ago from cancer, and she was on Humira, or something like it.  (She doesn't have Crohns, but she does have some other auto immune disease).  Now obviously, there's no way of knowing if the cancer had anything to do with the Humira, but it still scares me a little bit because I mean I'm young, I'm 25.  So it's just scary to think about things like that!
 
Any advice on the humira would be greatly appreciated! :)  I need to research it more but I'd rather hear what you guys have to say on it!
-Sara
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  Just got out of a 5 day hospital stay.  Have to be put on 2 antibiotics and (cry) 40 35 mg of Prednisone.  And I really really don't want to.  So scared to get moonface again! 
 


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 4/20/2010 8:45 AM (GMT -7)   
I wouldn't get too caught up on the cancer side effects, those are supposed to be really rare. I don't know the requirements for the drug companies listing side effects, but I imagine there can be a pretty minimal risk and they would still have to list it.

Sorry to hear you're back on prednisone. I've been known to fight tooth and nail to keep that stuff out of my system. Hope your taper goes well.
23 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Remicade, 50 mg 6-MP.


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 4/20/2010 9:36 AM (GMT -7)   
Sara, I've been on prednisone since January 2009 without being able to get off of it and I really thought it was great, except that my eye sight has gotten a lot worse and the dr said that it is probably the prednisone.  I need to get off of the pred, but my other option is to try some DMARDs and one of them can cause retinal problems.  So, it's really hard to know what is going to cause worse damage.  All we can do is choose a path and try it and decide if it's helping enough to be worth the risk.  I've been on Remicade, Cimzia, Humira and now back to Cimzia and yes, there is a risk and I have cancer in my family as well, but to me, the risk is small enough that it's worth the benefit.  It all depends on how well it helps you as to whether or not it will be worth it, and you won't know that unless you try it, but that's only if you are comfortable trying it.  I also know of someone who has Crohn's and was recently diagnosed with cancer that they believe was caused by Remicade, so it does happen, but I don't think it happens very often.  Look up the statistics, if that would make you more comfortable, and compare them to how many people die of stuff like bee stings, lightning, etc.  More people probably die of bee stings and the flu than get cancer on the biologicals.  But, it's all about what you decide you are willling to deal with.  I'd rather have a better life and die earlier from cancer or another side effect than live a long time but be completely miserable from Crohn's and arthritis. 

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


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/20/2010 1:50 PM (GMT -7)   
That's interesting about the eye sight because I've noticed I've been squinting a lot whether I'm wearing my glasses or contacts...I REALLY hope that is just temperary and once I go off the Prednisone it will get better! I didn't even think about relating that to the Pred.

Yeah I guess you're right, and I've heard a lot of people on the Humira who don't have any issues. The first week or so after the hospital I felt great and it was so nice to be going to the bathroom normally, not be in pain, etc. but now ever since Thurs or Friday I'm back to the normal pain, bathroom situations, yadah yadah. Not as bad as pre hospital of course, but still annoying. I guess since I've been on Remicade I might as well go on Humira, because obviously the 6mp isn't doing its job! It's just the grandma situation, because her cancer came on so fast and she was the most amazing person ever and to see her be well one minute and then dead the next just hit me hard I guess. But again, it's like you said. You don't even know if it's from that, and people die from car crashes and the flu all of that.

I guess I'm just a worrier....:/
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  5 day hospital stay April '10.  Have to be put on 2 antibiotics and (cry) 40 35 30 mg of Prednisone.  Turning into a walking zombie with the lack of sleep (around 2 hours a night), but at least I've been super productive!
 
Debating going on Humira...need advice! :P


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/20/2010 5:38 PM (GMT -7)   
Sara:

Here's some information regarding the cancer risks with biologics:
www.ccfa.org/about/news/cancerrisksexplained

From what I understand, both from reading that url, and from my husband's doctor is that the risk of cancer with biologics is really pretty low. It can exacerbate cancer if you already have it. And the risk for cancer doesn't increase with long term use.

The risk for cancer is less when you are on monotherapy with a biologic than if you are on combination therapy (with a biologic and an immune suppressor like imuran) . . . this makes sense, because both the imuran and the biologic carry a slight risk of cancer, and that is additive. I hope this helps put your mind at ease about humira. My husband has been on remicade for 2 years now, and it has kept him in remission and out of the hospital. Prednisone use has thinned my husband's bones (he was recently diagnosed with osteopenia of the spine). So, I think it's a pretty good bet, that in the long run, Humira will be much better for you than repeated Prednisone usage.

Good luck, and I hope you can wean off the steroids soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


Sir WipesALot
Regular Member


Date Joined Nov 2009
Total Posts : 42
   Posted 4/20/2010 6:54 PM (GMT -7)   
Sara...

As the others said, don't worry too much about the cancer or other side effects. The truth is that Prednisone and 6MP probably have equal or worse detriments to the body, including a risk for cancer with the 6MP. In fact, my GI told me that the cancer risk was actually lower on Humira than 6MP and that's one of the reasons he wanted to switch me to it. Well, that and I ended up needing a bowel resection on the 6MP, so who knows what it was doing for me.

I'm paranoid about the side effects... they are real and they do happen... Lupus is one, too. But so are all the side effects for Tylenol, antibiotics, etc.

When I went on the 6MP and was complaining about the cancer risk someone at work reminded me of all the cancer risky stuff that's around us anyway. It's probably not a whole lot worse than all the chemicals and stuff that are in our foods! I eat bacon and don't worry about it.

I've done Prednisone and I've done 6MP. Together for five months. I also had the wonderful persistent insomnia and puffy face. This Humira is much better for me and hopefully will keep my Crohn's at bay for a long time, if not forever. Go for it!
Humira, Prilosec, probiotics......

DX May 2004
34 YO M


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/20/2010 8:13 PM (GMT -7)   
Yeah, I'm still going to research it more but the more and more I think about it the more I can't wait to go to my GI in 2 weeks and say Heck Yes!

It's true, there's side effects with everything. I mean geez, before the Crohns and I was misdiagnosed with fake lyme disease for a year, getting a spinal tap was so scary because you google it and all it says is possible paralysis and death...Spinal taps at 17...not so fun...Plus, I drink way too much diet soda so there's my cancer right there! (I'm trying to quit allright! It's my one vice!)

I remember when I switched from the asacol to 6mp it was the same thing, looking at all the scary side effects. Plus the fact that my liver keeps on messing up with the 6mp so obviously its time I make a change!

Thanks for the advice guys! :)
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  5 day hospital stay April '10.  Have to be put on 2 antibiotics and (cry) 40 35 30 mg of Prednisone.  Turning into a walking zombie with the lack of sleep (around 2 hours a night), but at least I've been super productive!
 
Debating going on Humira...need advice! :P


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/23/2010 12:21 AM (GMT -7)   
So, I thought perhaps that it was just paranoia sinking in with my face getting a little poofy but yesterday my best friend confirmed it that yeah, my face does look poofier. I'm trying to be okay with it. I mean, even though I still have crohns symtoms and pain, I'm a lot healthier and happier than I was pre-hospital. So a little bit of a rounder face isn't the worse thing in the world right? But it's still frustrating. I've been so good this time, no salt or anything! Yesterday I dropped down to 25 mg (started at 40 this time around).

I mean, it's definitely not as bad as it was last time. I show friends pictures of when I was on it 8 years ago and some don't even recognize me. I just don't want it to get any worse than it is! (Last time I had crazy poofy cheeks and the underneath the chin going on, as of right now it's just a little extra under the chin.)

Just another reason why it sucks more when you're a chick with Crohns than a guy...Guys can gain a little extra and it's no big deal, women gain a little extra in their face and it's much worse!

For the people who do get poofier when they're on the prednisone, how long until you notice it going away?
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  5 day hospital stay April '10.  Have to be put on 2 antibiotics and (cry) 40 35 30 mg of Prednisone.  Turning into a walking zombie with the lack of sleep (around 2 hours a night), but at least I've been super productive!
 
Debating going on Humira...need advice! :P

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