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12-04-2013, 04:45 AM   #1
Zootini
 
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Humira??? Help!

I went to my dr yesterday after a MRI scan which showed that I still have inflammation in my bowel even after being on steroids for so long (about 3 yrs) my options now are either surgery or Humira. I don't really want surgery yet as I am only 20 and feel that I have years to fall back on surgery and my dr also felt the same. The only thing with the Humira is the side effects which kinda scare me. The cancer and the massive risk of infection. Also the fact that there has been no long term studies to show long term risks of the drug.
Does anyone have any advise? Does anyone know what the risk is for cancer with the drug or is it very rare? And if anyone is on Humira how are you feeling with it and what are the benefits for you? I really don't know what to do!! If it didn't have such serious possible side effects then I would be happy to take it straight away. Neither of the options are what I want but I suppose something has to be done.

Please help!
Any advise or information is appreciated.
Thank you in advance!
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12-04-2013, 06:03 AM   #2
Scaryman
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I went to my dr yesterday after a MRI scan which showed that I still have inflammation in my bowel even after being on steroids for so long (about 3 yrs) my options now are either surgery or Humira. I don't really want surgery yet as I am only 20 and feel that I have years to fall back on surgery and my dr also felt the same. The only thing with the Humira is the side effects which kinda scare me. The cancer and the massive risk of infection. Also the fact that there has been no long term studies to show long term risks of the drug.
Does anyone have any advise? Does anyone know what the risk is for cancer with the drug or is it very rare? And if anyone is on Humira how are you feeling with it and what are the benefits for you? I really don't know what to do!! If it didn't have such serious possible side effects then I would be happy to take it straight away. Neither of the options are what I want but I suppose something has to be done.

Please help!
Any advise or information is appreciated.
Thank you in advance!
I had the same concerns a little over 1 year ago when I started Humira and Methotrexate combo. MTX is a cancer chemo drug that helps with human bodies natural anti-bodies. So to weaken the anti bodies it makes Humira around %30 more effective because there is nothing making it weak. Aside from that yes the FDA had put black Labels on Humira. Yes, there are possibilities of side effects some serious some not so serious.
I had to deal with Chronic fatigue - this is normal, but you will get u sed to it over time.
I had to deal with skin breaking out - Used a surgical prep soap called "Hibiclens" to clear that up in 2 weeks time.
Joint pain - this goes away with time.
Understand that Humira is a immune suppressant TNF blocker. Its a monoclonal fully humanized protein. As I stated earlier there are risks with Humira, but understand its a "clean" drug. What you have to ask yourself, and only YOU can answer. Are you willing to give the drug the 6 months it takes to properly gauge the effectiveness of the drug and deal with the side effects ( Unless they are serious)? Or would you rather deal with chronic inflammation thus leaving you with scared intestines (strictures) thus having no choice but for surgical intervention.

Please understand I'm just giving you hard facts, But I am hyper sensitive to drugs, I had a miserable time with the loading doses but everyone reacts different. Such as life with Crohns being the most Non linear disease that it is. So can you give the drug a chance? Or would you rather deal with the crohns flares. Because the way I see it that is your choice. Its got a really good handle on my flares.

Just make sure you know the possible side effects if you decide to give Humira a chance. So you know what to look out for, another thing is this scenario. since this drug suppresses the immune system lets say your going to fly some where. A passenger next to you in sneezing and coughing. Ask a flight attendant to move to another seat. Plus chronic washing of hands in public areas is another thing. Just telling you if someone around you is sick - get away from them!!!
__________________
Diagnosed 2003
5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
12-04-2013, 06:27 AM   #3
bobisacrohny
 
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Surgery isn't reversible but it focuses in on the problem area. A biologic sadly focuses on inflammation in general and can cause serious new problems, which can be life threatening, can alter other parts of the body's defense, and is only a maintenance sustaining drug if it does help. Surgery has it's risks too and can cause problems with other parts of the body as well. The biologic would seem logical if it just targeted the problem area, but they are not there yet. Both treatments are very expensive which has implications directly or indirectly. Do nothing and it gets worse. Trying to climb a slippery slope is not easy. A cure of the cause is greatly needed. You would think with all of the smart people in the medical field with the increasing technology and knowledge something would break. Let's pray for new safer treatments in this horrible disease! Medical superhero(s) or divine intervention(s) were are you!!!
12-09-2013, 02:46 AM   #4
Zootini
 
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Thank you both so much for your reply's! Two different views but both informative.

Scaryman - I defiantly agree with having to stay away from sick people! But that is one of my worries, do you work at all? And if so how do you find working? And do you tend to pick up sicknesses very easily? Where I used to work people would come in with sickness bugs because they didn't want time off of work, but that for me is terrible as I always pick up bugs and get them 10 times worse than the 'normal' person!!


bobisacrohny - Very true too about the drug going throughout the whole body, will have to think about that one. I would go for the surgery but scared lol and I know that more times than not the inflammation will move to another area of the bowel and then I am back to square one with a little less bowel than before!! & yes a cure would be fantastic!!! Or even a great med without all the nasty side effects....maybe one day!

Thank you both xx
12-09-2013, 06:34 AM   #5
Scaryman
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zootini-

I do work, I have no choice. If people come in sick I let them know to stay away. i tell my supervisor of the situation and that I do not want to get sick that they should go home as I work in a call center. Not good.
12-12-2013, 01:09 PM   #6
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Hey Zootini. Both of these guys have very good points. If you don't mind, I'd like to give you my 2 cents. I have had serguries and been on humira. I was diagnosed with UC origianlly. I tried almost all the meds they make for it, even injeactions like remicade. My doctor finally said that surgery was a must. So, I had my entire colon taken out. I saw an immediate change for the better. About two years later I started having my old symptoms again, and found out that UC can sometimes end up turning to Crohn's. So, I was put on humira. I have only been on it for about six months but I'm doing better. I guess my point is that surgery does focus on the main problem, but even if you to have surgery, something could happen to make you have another one down the road. My brother in law has Crohn's and had a part of his small intestine taken out, just to have more taken out later.

To me (just my opion, it's ultimately your choice) I would think try humira first. If you don't see an improvement or don't take to it and the side effects are too much, then you can always fall back to a surgery. I do have some of the smaller side effect from humira. I have the fatigue but take a multi vitamin designed for people with IBS, and my skin breaks out a little bit where I get the injection. But, I would rather deal with that than get cut on again. Once again, all of this is my opnion. From everything I've read, the harsher side effects of humira are rare. Good luck with which ever way you go!
12-12-2013, 03:07 PM   #7
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I am new to Humira. I started it in May, with plenty reservation. I was scared to death of it. I was diagnosed with sever Crohn's and colitis (sp?), I could not walk or use my hands, I had lost 30 lbs and my doctor left me no choice.

I do suffer fatigue, I also break out really bad on my chest, back and arms. Like itchy red bumps more than it is acne. I also get a big red sore spot at the sight of the injection for about 48 hours. I experienced headaches at first, but that has gone away.

While I hope there comes a time to no longer have to take it, I have to say it has been a saving grace. I can eat, I have gained my weight back, my hands and feet are back to normal. I am living a normal life outside of flu shots, Hep vaccinations and regular GI doctor appointments. While there are risks, for me it has been worth it.

I have been very worried about getting sick, but I drink OJ on a regular basis and wash my hands full time all the time. I keep sanitizer in my purse and use it frequently. You do not have to seperate yourself from the world, I promise.
01-09-2014, 08:15 AM   #8
Zootini
 
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Thank you for your replies. I think I might go with the Humira to start with and as milner06 and my doc said I can always fall back on the surgery if the drug doesn't work..I dont want to end up with no bowel lol! I can deal with side effects I guess my biggest concerns were the more serious ones like the cancer! But I think I will ask my doc what the stats are.

Thank you all again! xxx
01-17-2014, 03:23 PM   #9
MissBG
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Thank you for your replies. I think I might go with the Humira to start with and as milner06 and my doc said I can always fall back on the surgery if the drug doesn't work..I dont want to end up with no bowel lol! I can deal with side effects I guess my biggest concerns were the more serious ones like the cancer! But I think I will ask my doc what the stats are.

Thank you all again! xxx
To address your concern about the cancer the increased risk is very small but its there so they have to list it as a possible side effect. But there is also an increased risk of colon cancer in untreated crohn's patients to begin with.

As everyone else has said its a decision that only you can make for yourself and its all about what your comfortable with. Personally for me it was weighing the increased risk of 1 type of cancer plus a better quality of life against the increase risk of colon cancer and being miserable all the time. To me the quality of life I have is worth the risk.
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Singulair 10mg
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