Humira Crohn's Disease

Elmer Said:

Crohn's disease??? questions about humira???

We Answered:

hi hanna, I am a female crohn's pt. for 28 yrs. dxed at age 12.(am 40 yrs. old now) I can totally relate to your concerns and questions.

Are you a candidate for Entocort by chance? It's a steroid but not as potent as prednisone PLUS there are no side effects at all--no moon face, no mood swings, it doesn't get into the blood stream at all, it goes right to the inflammation and wears off after many hrs., there are no eye problems, etc.

I was on Humira for 9 months. The side effects I had were:

Bruising at the injection site on my thigh so I take a bag of ice cubes (not the small thing they give you to numb the area) and numb the area in and around where I am going to shoot myself. Then I wipe w/an alcohol wipe and wait for a few minutes b/c that can cause burning in itself.

It takes several months before you will notice a difference in your symptoms. Be sure to tell the drug company's RN when they call to follow up with you. They did with me. I was given a hotline number to call w/any problems or questions...even if it was a side effect I called.

As w/any biological treatments there is always a risk. That is why you have to follow up w/your GI, get the necessary blood work done, call the drug company if you have questions (I did alot b/c I was nervous at first) You should've been trained by an RN the drug company sent to your home on how to give yourself the shot along with an information packet.

Anyway, after the shot, put the ice pack on the area again to numb it.

As for the joint pain, see if you can go in for physical therapy or take a muscle relaxer when it gets really bad. I have back pain, arthritis in my hands, knees, legs, arms. I took PT for all of these areas over a period of time to help myself if no meds were available.

If you go to the Crohn's & Colitis Foundation's website, they have information ranging from the newer meds, diet, surgery, support groups for teens, as well as a hotline and live chat run by healthcare experts you can call during the week. There is also an open forum where you can post questions to others like yourself.

Hanna, I know what it's like to be young, dxed w/a serious illness and then having to deal with all of the meds, tests, surgeries, etc. Definitely check out the ccfa site and locate a local ccfa chapter near you to meet other kids your own age. Also, educate yourself and your teachers so they don't give you a hard time when you have to leave class to use the bathroom. CCFA has brochures you can give to them so they know how serious CD is.

feel free to email me if you have questions. I wish you all the best.

Don Said:

Do most of you Crohn's patients on Humira do self-injections or have them done in a doctor's office ?

We Answered:

hi elisabeth, I am a female crohn's pt. for 28 yrs. I had Humira myself for 9 months.

The drug company will send an RN to your home to teach you and your daughter on how to administer the shot. Some GIs prefer the loading dose be taken at the same time (4 shots 1 after the other instead of an hr. apart). Yes, it is painful BUT I have found that if you numb the area w/an ice pack for a few minutes and then inject it, the sting won't last long.

The company's RN does call to do follow ups for a few months plus they have a hotline you can call in case of questions or problems.

My heart goes out to your daughter. Crohn's stinks. But after the loading dose, she will only get it twice a month (every other Monday).

feel free ask questions. best of luck.

Minnie Said:

Has anyone had success treating Crohn's homeopathically (For over 1 year)?

We Answered:

Hi,
I work for a top research center in Crohn's in Ulcerative colitis.
You will find a few patients who troll Crohn's forums touting homeopathic, naturopathic, holistic cures that worked for *their* Chron's (or ulcerative colitis), however there are a few important things to keep in mind.

-->While crohn's is a disease that currently has one name, it is multifactorial and has an entire family of genes that control it, and then even if you've got the "bad" genes, it appears that you need to have certain external triggers to "activate" the crohn's--and those external factors aren't the same for everybody. Certain common triggers include stressors like pregnancy and intestinal infections from travel abroad. But it is realistic to assume that for some patients, the stressors might be pesticides and similar chemicals. My guess is that these are the patients who are successfully finding remission in the diet you tried, and that is why it doesn't work for everybody--they have a genetically different type of disease than you had. I have *NEVER* seen a patient with *severe* disease find success managing Crohn's or Ulcerative colitis by any of these methods...if this is a genetic sub-set of disease, it tends to show up in mild-to-moderate patients. Of course, increased consciousness of your diet can improve your symptoms if you perhaps un-intentionally go low-residue.

-->There is one study that I know of with a "natural" herbal remedy run by "Hutchison" medi-pharma. They are trying a drug called HMPL--0004 which supposedly has cytokine and tumor necrosis factor suppressing properties even though it is actually just an herb that has been used in asia for many years. This herb is generally referred to as Andrographis Paniculata (or a few other names) and is available over the counter at health food stores (I'm not sure what they say it's good for), but according to Hutchison, it shows promise with inflammatory diseases, including Crohn's and they hope one day it will compete with mesalamine. A lot of experts are skeptical b/c the company is from China (not a hotbed of research honesty), but aspirin and other meds once were derived from plants, so, it's quite possible it will work.

-->There are no studies showing pro-biotics to be useful in the treatment of Crohn's. If you are going to spend money on pro-biotics, just buy yoghurt. The only time this isn't true is if you have been on high-dose antibiotics, of course, like for surgery and killed off all of your gut flora...then you should take a prescription from your GI, however, to properly restore them, not a "health store" supplement.

-->If you ever find yourself losing your insurance again, almost all drug providers have something called a "patient assistance program," Abbott's Humira, included. If you have exceeded your use of the program or do not qualify, you should look into enrolling in a phase III clinical trial rather than jeopardizing your health. You can find these trials at www.clinicaltrials.gov searching with your disease and location. You should look for the trial about 3 months in advance of knowing you will need to enroll to minimize your lapse in treatments. You may even find a trial that will give you Humira for long-term safety data.

Sue Said:

Is humira covered as a treatment for Crohn's in England?

We Answered:

I'm not sure about your ailment but Humira is available for the treatment of arthritis. I have been taking the injections for about 4 months.

Bernard Said:

Crohn's Disease Abscesses?

We Answered:

hi manifest, i am a female crohn's pt. for 28 yrs. like yourself.

My heart goes out to you. Abscesses can be a pain big time.

Check out the crohn's and colitis foundation's site. They have tons of updated topics such as women's issues, diet, surgery, side effects like absceses/fistulas, as well as a live chat and hotline run by healthcare experts. There is also an open forum where you can post questions to others like yourself.

Be sure to ask your GI for something for pain management. As a crohnie, you are entitled to be made comfortable. Also, ask for something for stomach spasms as well if yours is bothering you.

I was on Humira myself and they have a great support team that keeps tabs on you while you are taking it. I hope it helps you and gets you better fast.

feel free to email me if you have questions. I truly feel your pain and frustration. good luck.

Greg Said:

please help me im so scared?

We Answered:

that sounds like an alergic reaction but it also sounds like it could be lymes disease! The lump on your neck could be your lymph nodes. Is it on the back of your neck? Check out lymes disease symptoms. If that is what you have, dont worry, you can get antibiotics for that. I was diagnosed with Cancer last week actually. Im not like most people, I am 100% prepared for whatever comes my way. Dont be afraid whatever it is, but if you just noticed this 3 weeks ago, you will be alrite regardless im sure. Here, i found a link for you

http://arthritis.webmd.com/tc/lyme-disea…

Kay Said:

help i think i have cancer!!!?

We Answered:

I dont want to worry you but I also have Crohns disease, i take drugs called pentasa and 6-mp. I was just diagnosed with Hodkin's lymphoma last week because of a lymph node on my neck which was also not hard. One symptom of lymphoma is being itchy all over, im sorry to say that but its true. Asked to get the lymph node biopsy'd to tell you if you have lymphoma or not. your lucky because its only 3 weeks in, i've had mine for 2 months. best of luck.

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