HealingWell
Search Close Search
☰

New member seeking advice on Crohn's treatments 6MP & Humira

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/29/2015 10:02 PM (GMT 0)
Hi all,
Not sure how to start this, but I was diagnosed with Crohn's in 1998 (AT 23 yrs old) during an emergency exploratory, after 2+ years of constant problems, vomiting, severe cramping and misdiagnosis. I had ileum resection immediately, 20cm (8 inches) removed. Doctors wanted me to take approx 28 pills per day after my surgery, I decided on zero pills at first to see what I could tolerate. Turns out, I tolerated a lot. Had persistent diarrhea, cramping, etc, fatigue for many years but "dealt with it" as an inconvenience. Now, recently in Nov 2014, my condition got worse with 6 hospital admissions in 3 months due to severe abdominal pains. Had ileocecal resection with 40cm removed (16 inch). Now, doctors want me to take Humira and 6MP immediately now that my surgery has healed, because of recurring abdominal cramping and another recent hospital admission last month, with joint pains, lower back pain, headaches, etc all being common symptoms now.

I am nervous about taking either of these meds (Humira and 6MP) but I am being strongly urged to begin both of these treatments as soon as possible to get my Crohn's under control.

So, my questions are:
--Is anyone out there on Humira and 6MP?
--Has it helped you? (a little or a lot)
--Have you had side effects? (and what were they?)
--Has anyone tried the Humira & 6MP combo and been taken off of them for any reasons? (complications?)

ANY personal stories you could share would be greatly appreciated so I can make a decision if I want to begin these treatments or not... The news and what I read about the drugs has me less than comfortable when I read about being susceptible to TB, Hep-B, and cancer. What kind of cancer? One doctor told me skin cancer, as my concern was liver cancer (which my dad had) cry

Post Edited (paradox96) : 9/29/2015 5:48:35 PM (GMT-6)

Posted 9/29/2015 10:35 PM (GMT 0)
Hi and welcome paradox, sorry you have to join the club!

I am on Humira only (no 6mp or any other orals, either allergic or non-responsive to them) I flared with my CD for 23 yrs, half way through having CD I also developed lactose intolerance and IBS-C...Humira did put my CD in remission thankfully because I had also developed a recto-vaginal fistula which Humira also put into remission (fistula tract will remain forever but it's no longer inflamed so no more passing gas via the vagina thank goodness!) unfortunately it's my IBS that I'm still struggling with but also still working very hard on it.

No side effects from Humira other than horrible headaches that I started getting from it (I also take it weekly not biweekly) it was surprising to me that's the only side effect I've gotten from it considering my bad luck with oral meds in the past and thankfully I found out that taking an antihistamine before bed the days I take my shots has kept the horrid headaches at bay.

I chose Humira for convenience rather than going in for infusions, doing shots at home myself for 10 seconds compared to a much longer time getting infusions and having to drive to and from for infusions wasn't appealing to me so when my GI asked me to choose between the 2 (remicade or Humira) it was an obvious choice for me to make.

Lymphoma and melanoma are the main types of cancer risk with taking either Humira or Remicade and the risk is very very low...check out this link....

http://www.medpagetoday.com/Rheumatology/Arthritis/38106

You can also try to google if there are any higher risks for those that take 6mp along with Humira as I'm not aware since I don't take 6mp.

Good luck!
Posted 9/30/2015 12:08 AM (GMT 0)
Thank you :)

Maybe I have the wrong mindset about Humira and 6MP because people talk about bad things more than good. This is why I have not taken meds since my diagnosis in 1998. Fear of side effects. Unfortunately, I realize that my life cannot remain this way as my illness is getting worse and I'm not in the same health condition as I was 17 years ago. Age and Crohn's make all symptoms more challenging to recover from these days.

My doctors here in USA say that the benefits far outweigh the drawbacks. But they do not have Crohn's, so I take it with a grain of salt. I lived abroad for the past 19 years and was given poor medical treatment for so long that I lost faith in Gastroenterology doctors. I was asked to relocate permanently back to USA to be monitored and to receive better health care than I had in Dubai. I had so many bad doctors while I lived abroad, that it is difficult to trust the recommendation of specialists in USA, or anywhere anymore. But I don't want my fear to prevent me from getting healthy if effective treatments are working for others. I just had my 2nd surgery on my small intestine and I would like to delay my 3rd as long as possible.
Posted 9/30/2015 12:22 AM (GMT 0)
As you've learned it a lot more then just an "inconvenience." You might be able to try and tolerate the symptoms, but meanwhile the disease is destroying your insides. Which just leads you to more hospitalizations and surgeries. The longer we go in to denial about it the worse it gets. So yes, I'd absolutely recommend going on those medications. Yes, all meds can come with side effects. But the disease is something much worse to fear uncontrolled.
Posted 9/30/2015 2:50 AM (GMT 0)
Hi paradox,

I wasn't medicated for 23 yrs and flared the entire time (I tried diets and all kinds of supplements some of which did help symptoms slightly) but inflammation was still doing it's damage and likely that's a big reason why I ended up developing a recto-vaginal fistula. Being either allergic or non-responsive to oral meds didn't help and I know how you feel about the side effects (especially when you're figuring out that you're actually allergic to the meds) the choice is yours of course, but I never thought Humira would do what it has for my CD (and fistula) let alone only suffer with those horrid headaches (which I mentioned being able to alleviate those thankfully) and that's what makes me partial to encouraging people like you to give it a shot (ha, pun intended) my GI told my husband that if I was his wife he would definitely feel confident with me being on Humira, that it was my best bet with my negative history with traditional oral meds but most importantly, the serious side effects of Humira are very slim and that I would be monitored very closely while on it.
Posted 9/30/2015 12:25 PM (GMT 0)
Hi there

I'm on Humira and azathioprine (similar to 6MP). Yes I believe the Humira has helped a lot. It hasn't provided me with remission but I am back in a life where I can do stuff - and not end up in hospital. For me, that's good enough. Obvious side effects have been limited to noticeably lower immunity - harder to shake things off and have caught chicken pox 3 times (once normally as a child, once on azathioprine alone and again this summer when on both drugs).

No horror stories from me about the combination. I did try infliximab (remicade) prior to Humira but this did nothing. Don't be put off by the side effects listed ... They are rare and so many of us consider ourselves low risk and the drugs are therefore the better of two evils.

Good luck x
Posted 9/30/2015 7:51 PM (GMT 0)
A lot of people make the decision and follow a pattern.
Feel sick for awhile.
Get diagnosed, put on meds.
Feel better.
Go off meds.
Endure their symptoms for their years.
Until the disease launches a full on nuclear attack and you almost die/meds are barely strong enough to help at all.
I should know. I was one of them.
What I didn't know was that during those med free years where I thought I was fine, my disease was progressing internally until boom!
What was once mild is now quite severe.
I wish I could go back to that 17 year old kid and tell her to keep taking her meds even though she felt better and to not believe her family who told her she wasn't really sick and misdiagnosed.
I was so sick after this last attack that I didn't care about side effects. I just wanted to feel better in anyway that I could and to somehow fix what I had done to myself.
Do you know how many times I've written a post like this on healingwell? 100s of times.
I do it because I'm hoping that at least one person out there considering going off their meds will read my post and reconsider their decision.
Posted 10/2/2015 3:54 AM (GMT 0)
Hi :)
I was diagnosed in 2012 when I was hospitalized and in such a dire state, that when the Dr's said I should start remicade treatments immediately I didn't have the strength to say no or do any research about the drug. Unfortunately I was one of the few that was hit with side effects. I now have peripheral neuropathy in my arms and legs after two treatments. The additional pain was exactly what I didn't need! Now I am on 3 tabs (150 mg) of azathoraphine daily along with gabapentin (300 mg) nortriptyline (75 mg) and 6-8 percocet a day for the pain. Only good thing is the Percocet helps me with the number of bms per day, but the very downside is the brain fog. I have been hesitant to try humira since it is so similar to the remicade, but have been unable to get this darn crohns under control. I am having a hard time walking and it's really hard as a mom to keep this family going. I do hear many great stories about the successes of humira and it is really tempting. If I had not had the negative reaction to the remicade I think I would definitely give it a go! Good luck to you and let us all know what you decide:)
✚ New Topic ✚ Reply