I have a friend who has had her j-pouch for 25 yrs and she is on humira. I can get you in touch with her if you like.

Thanks Holly! I would like that!

Pam

Me, since 2004 and before that, Enbrel and Remicade, for Ankylosing Spondylitis. If you have any questions, feel free to post here or PM me.

Thanks Breezie, I appreciate it and will surely take you up on the offer. You hear so many scary side effects from taking these class of drugs, it's good to hear how others are doing on them. Also interesting that you have AS, I don't have that myself, but have other autoimmune diseases. Thanks again!

I was on Humira for 5 years for arthritis (10 years after j-pouch, 30+ years after UC diagnosis). I was doing OK, but needed to take it weekly. I've been on Simponi for nearly 3 years now, mostly to have monthly injections instead of weekly. Plus, it doesn't sting!

Other than the injection stinging, I had no issues with it. My labs actually improved while on it. No anemia or liver problems.

Jan

Thanks for the information Jan. I've been very upset about the dx of Crohn's just 1yr after takedown surgery (especially being dx with UC for 19yrs), but feel much better about taking Humira after reading posts from you and others. I've never even heard of Simponi, but the idea of monthly injections as opposed to weekly ones would be very appealing.

I'll be starting with the standard 4 injections one week, wait two, then 2 injections, wait two weeks, then will do 1 injection every two weeks. Hopefully it will work well for me.

Btw, it was a bit reassuring to read your post about the Lymphoma risks likely being more inflated than originally reported.

Thanks for your input!

Thanks! When I considered possible side effects, I tried to think of them in the context of what the risks were of NOT using this treatment. For me, the potential benefit far outweighed the risk, so I went forward, and was glad I did.

Simponi is not approved for Crohn's, but is close to approval for UC.

Jan

The only caution I would issue with Humira is to get your heart health checked prior to taking it. I tried Humira for my UC after failing on Remicade. I started out on the regular dosage of one injection every two weeks - but was increased to 2 injections every week. It was during this time that I suffered a heart attack. Luckily it was a minor one but I am pretty sure the Humira was a contributing factor. Heart failure is one of the side effects listed on their website, so I would recommend angiography or a stress test at the very least before starting Humira if you have any other risk factors. I didn't and I wish I had.

A side effect of "heart failure" would be extremely unlikely to manifest as a heart attack without significant other symptoms. It's a big, complicated world, and many things can be interconnected, but that entry on the list of side effect doesn't look to me like evidence of a plausible connection.

PamShea can I ask how they dx you with Crohn's. The reason is I am nearly one year out from takedown 4/30/2012 and have not been right. I was seeing my GI every 4 weeks and she believes I need surgery to remove the rectum that is still diseased. I see my surgeon on May 6th to see what my options are.
I had a prometheus test way back several months ago and the markers showed that I have Crohn's not UC. I know based on every one, GI and surgeon that it is not 100% but I am still questioning this dx. Do I go with this surgery or just opt for ileostomy and call it a day so that I can get on with my life?!
Now, reading this post I have often thought that I could try humira to see if that would control me. I wasn't eligible for it because at the time of UC failure it was not covered through insurance for that dx and I had already failed all the other meds. that were for UC. Now, it is covered for UC or do I have Crohn's? As you can see not sure what to do!???????????????

Roberta

Worsening or new onset congestive heart failure (CHF) is a possible side effect, but it is different than a heart attack, which generally is caused by CAD (coronary artery disease). All TNF blockers have this as a possible adverse effect, so something to be aware of, for sure.

Having a diagnosis of Crohn's can open doors to more treatment options, so in that sense, it is a good thing. Try not to get too bummed about the name of your diagnosis.

Jan

RLC, I had a pouchoscopy with biopsies as well as a MRI/MRE. But the diagnosis is a little more complicated than just those tests alone. I don't know the exact terminology my doctor used to describe the type of inflammation I have, but it's a type more associated with Crohn's than UC. The way I understand it, this is something that could be ascertained visually and pathologically. It has to do with the severity of the inflammation, where it's located, and so on. My doctor has quite a few JPouch patients and is actively involved with IBD clinical trials at Shands hospital at UF. She's highly recommended, so I feel comfortable with her opinion...even if I don't like it! :-(
I wish I had a better explanation for you than that, but I don't! My doctor gave me a very thorough explanation, I just can explain as well as she did!

Bogey, I am so very sorry about your heart attack, and glad you are ok! I was very worried about Humira ( and still hate the idea ), but I discussed my concerns with my GI who assures me the possible side-effects and potential complications of the Crohn's disease far out weigh those associated with Humira. There are very real possible negative side-effects with this drug, but I don't want to risk losing my JPouch or having fistula's, etc. I suppose I'm taking an "informed" risk, but one I feel is necessary.

And btw RLC, Humira has been approved for UC so with or without a Crohn's dx, your insurance should cover it. The drug company also offers financial assistance, even for folks whose insurance does cover it. I'm able to get it for $5.00 a month! For me, it would be worth trying it before going to an end ileo. Just my opinion though!

PamShea -
Thank you so very much in explaining everything! It does make sense to me. I am going on May 6th with all my questions to the surgeon to see what my options will be.
I know about the Humira being approved for UC it became effective after I had my first surgery 2/29/2012 (leap year). Figures!

Roberta

Best of luck to you Roberta! I hope you will get some good information at your doctor appointment so that you can make the best decision possible for your health.

Take care!

Hi my name is Lucy, I've been listed as indetermend colitis, at first it was uc for the longest time now because of many complications they've labelled me differently.I also suffer from spondilitis athritiis. I had an anaphaltic shock to remicaide and was on methotrexate for years doing fairly well. Due to a bad case of pouchitiis and my arthritis was acting up they tried to put me on humira.I started with 4 injections then 2 then 1 unfortunately right after my first I started having side affect the nausea, loss of appetite sever head aches and weight loss lets say by the end of those 4 weeks I lost 22 pounds and ended up in hospital with silent phemonia....I had no clue about the phemonia no symptoms the only reason I ended up at hospital was because I was vomiting constantly and spiked a high fever.when I called the nurse to explain that I washing doing well, she brushed my off. Thank God I had an appointment with rhumatologist that same day and when he saw me freaked out how frail I looked and hospitalized me. They cut it off cold turkey. Now because of that I'm not on any meds for my RA and need to be on fanthnaly pat hes for pain. The company from humira used to check up on me in the begining which I found it was nice but when they found out that I was hospitalized for silent phemonia they never called me back. I don't want to scare you but I want to share my experience because I find they always let us talk to patients with good out comes but never talk to us about patients that have bad reactions. My suggestion to you is ask to meet people on it and then everyone reacts differently . The best of luck to you I hope and wish you positive out come!

Thank you PamShea and Lucy...! All the information that I receive is better than none at all. I am not sure of what my future is but it certainly has got to get better!

Roberta

My point in posting my previous comment was to caution others based on my experience. My use of the term "Heart Failure" over "Heart Attack" in my original post was incorrect, however heart attack is listed as an "Infrequent side effect" of Humira SubQ.
As I said if you have risk factors such as high cholesterol or a family history of heart attacks etc. it is certainly worth bringing up with your doctor before starting Humira.

Quite true! All the more reason the prescribing doctor needs a thorough history, to be sure there is proper monitoring.

Jan