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Worried about humira - thoughts please

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Posted 10/23/2016 7:32 AM (GMT 0)
My son is 24 - has ankylosing spondylitis and UC. Have kept the UC under control for over a year now through Chinese herbs but they don't work on his back. Also now got over confident and hasn't reallly been taking the herbs properly and now has diaorreah so worried it's all kicking off again.
He's been approved for humira - it really worries me though - thoughts and advice please?
Posted 10/23/2016 11:35 AM (GMT 0)
What worries you about humira? It's safety profile is pretty much equivalent to the remicade and azathioprine he's previously been on.
Posted 10/23/2016 11:39 AM (GMT 0)

franny19 said...
My son is 24 - has ankylosing spondylitis and UC. Have kept the UC under control for over a year now through Chinese herbs but they don't work on his back. Also now got over confident and hasn't reallly been taking the herbs properly and now has diaorreah so worried it's all kicking off again.
He's been approved for humira - it really worries me though - thoughts and advice please?

I've been on Humira for almost 2 months and it's put me in full remission, or very close to that. I think the fact that it's so narrowly tailored to TNF blocking makes it safer than a lot of drugs that have broader, more systemic effects. I'm also much more worried about the risk of my uncontrolled UC related inflammation leading to colorectal cancer than I am about the tiny risk of cancer from Humira.

If you search through the existing threads about Humira you'll find lots of discussions of the pros and cons. What specifically has you worried?
Posted 10/23/2016 2:11 PM (GMT 0)
Thanks for your reply. Am worried 1)Risk of lymphoma and t-cell cancer 2) how long will it work for? He's young and don't want to use up all drug possibilities though know there are others. 3) long term side effects.
Posted 10/23/2016 3:02 PM (GMT 0)

franny19 said...
Thanks for your reply. Am worried 1)Risk of lymphoma and t-cell cancer 2) how long will it work for? He's young and don't want to use up all drug possibilities though know there are others. 3) long term side effects.

The risk of adverse events is quite low:

www.medpagetoday.com/rheumatology/arthritis/38106#

This study found the cancer risk no greater than the general population:

www.medscape.com/viewarticle/823003

As you mentioned, there are other biologics on the market for UC and a biosimilar for Humira has been approved but is tied up in litigation.

Humira has been around since 2008 and the record so far looks very good. 30 years from now, who knows?

All medical interventions have risks. My feeling about Humira is that I'm mad as hell that my GI didn't put me on it three years ago when it was approved for UC. I think it would be pointless and cruel to withhold it from your son.
Posted 10/23/2016 3:18 PM (GMT 0)
Ok I appreciate your straightforward reply! It's his decision - he's 24 - we are just trying to gather opinions. Thanks so much.
Posted 10/23/2016 3:31 PM (GMT 0)
What about, though, the people you read about who say they felt so ill on it, made their lives worse etc - you can't help listening to them?
Posted 10/23/2016 3:59 PM (GMT 0)

franny19 said...
What about, though, the people you read about who say they felt so ill on it, made their lives worse etc - you can't help listening to them?

I think you should listen to them, in the frame of reference that the reports are purely anecdotal and coming from people who are very ill and often being treated for multiple diseases. They really have no idea if it was actually the Humira that caused their complaint. That's why we do controlled studies that isolate the effect of one variable (treatment with the drug in question) over a large number of study subjects. That's why we make the pharma's do studies like this one:

/www.ncbi.nlm.nih.gov/pubmed/25155227

"CONCLUSIONS:
Remission, mucosal healing, and improved quality of life were maintained in patients with moderately to severely active UC with long-term adalimumab therapy, for up to 4 years. No new safety signals were reported."

And as with any drug, if he doesn't react well to it you talk to the consultant and discontinue it if it seems sensible.

The only side effect I've had was a mild headache after the first two injections. I've read that taking a benadryl before the shot will help with that. After my last injections, which was a single dose I took an antihistamine and had no reaction at all. Except my toilet radar keeps shutting down and I'm not afraid to get in the car anymore.

I hope things are well in Old Blighty. I'm a yank who used to live in the UK. :-)
Posted 10/23/2016 5:20 PM (GMT 0)
There's always horror stories on the internet. I'm sure some have some truth in them, some are based on misinformation, and the rest who knows. Risk versus benefits are the best way to look at it. Do adverse reactions happen, yes but the odds are extremely rare. It tends to be human nature to assume the worst will happen to me, but the odds are that they won't.

Humira's been around since 2008 and not a whole lot new has been associated with it, which is reassuring.

The most concerning side effect of these medications is lymphoma which has odds of 6 in 10,000 (or 0.06 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

There's news about new medications in development all of the time. New stuff is in the pipeline, I wouldn't worry about running out of them.
Posted 10/23/2016 6:11 PM (GMT 0)
Yes some regular posters here have had bad experiences with Humira after first trying Remicade. Perhaps Bacon Girl can chime in here and discuss other options that have worked with her.

BTW if Chinese herbs have been effective for so long for your son then maybe diet modification might help. A food diary might isolate any triggering foods that are causing inflammation.

www.healingwell.com/community/default.aspx?f=17&m=2970342
i had the exact same side effects from remi but WAY WORSE on humira. humira has been the hardest drug by far for me (i have UC but figured i'd comment anyway). the joint pains and swelling were terrible. mine went away about a month or two after i stopped it.
Posted 10/23/2016 6:46 PM (GMT 0)

IamCurious said...
Yes some regular posters here have had bad experiences with Humira after first trying Remicade. Perhaps Bacon Girl can chime in here and discuss other options that have worked with her.

BTW if Chinese herbs have been effective for so long for your son then maybe diet modification might help. A food diary might isolate any triggering foods that are causing inflammation.

www.healingwell.com/community/default.aspx?f=17&m=2970342
i had the exact same side effects from remi but WAY WORSE on humira. humira has been the hardest drug by far for me (i have UC but figured i'd comment anyway). the joint pains and swelling were terrible. mine went away about a month or two after i stopped it.

Correlation is not causation. Joint pain is a very common external manifestation of UC. I have it myself. I developed bursitis in my right hip shortly after I was diagnosed with UC. It gets worse when I flare. See:

/www.ncbi.nlm.nih.gov/pubmed/21122514

It's much better since I started Humira. I don't know if that's a direct or secondary effect of Humira or just dumb luck.

So maybe it was a Humira side effect in her case and maybe it was normal UC related joint inflammation. That's why we do studies. It's not listed as a side effect that's been observed in any statistically significant way:

www.webmd.com/drugs/2/drug-64713/humira-subcutaneous/details/list-sideeffects
Posted 10/23/2016 6:55 PM (GMT 0)
Thankyou all - keep posting - really appreciate the comments and the links and your understanding...
Things are good in Blighty thanks Richard...
Posted 10/23/2016 7:22 PM (GMT 0)

Richard in NY said...
I've been on Humira for almost 2 months and it's put me in full remission, or very close to that.


My meds seemed to be gradually losing their effectiveness so I started smoking cigarettes again. Put me back into full remission.
Posted 10/23/2016 7:41 PM (GMT 0)
Sorry I poop I didn't answer you - he took the removable at a time when he nearly lost his bowel so we would have tried anything rather than that and it did work while he was on azathiaprin and remicade. After about two months they took him offf the azathiaprin after reports that being on both drugs raised the chances of lymphoma in young men. about 3 months later the remicade stopped working so that was that but it did save his bowel. That's when we started looking for alternatives without side effects and we found the herbs but they don't work on his back which is a pain.....
Posted 10/24/2016 9:58 PM (GMT 0)
I've been on humira for almost a year now and I love it! It is a painful shot but I take a half of a percocet about 45 minutes before I give the shot to myself and I don't feel it!
It's been a life saver for me and the risk of cancer is very very small. I used to worry about that as well because I'm a hypochondriac but my 3 month blood work helps put my mind at ease every time.
I was thinking about surgery because my uc was so bad and I was steroid dependant and even the steroids stopped working,
I took my first humira shot (well the loading dose of 4 shots) and within a week I was feeling almost fully better and now I'm almost positive I'm in remission!
I'll find out for sure in a couple of months when I do my next colonoscopy

Good luck to him!
Posted 10/25/2016 6:33 AM (GMT 0)
Thankyou ontheflipside - so pleased to hear you are doing so well. And you are young like him. He has been cleared for humira and will start in about two weeks. Like you, steroids don't work now - just blow his face up! I wish he could just stay on the herbs as hopefully they will bring him out of this flare but he is so sick of the bad back which is preventing him from playing sport which he loves that he wants to try humira as it could totally change things for him. This forum is brilliant - I've had great advice from Richard - so kind - I needed some positivity about humira as was only reading horror stories!!
Posted 10/25/2016 8:23 AM (GMT 0)

ontheflipside said...
I've been on humira for almost a year now and I love it! It is a painful shot but I take a half of a percocet about 45 minutes before I give the shot to myself and I don't feel it!

I assume you're letting the auto injector come to room temperature by leaving it out of the fridge for 30 minutes or so before using it.

The pain is most likely because you aren't waiting for the alcohol to evaporate fully before doing the shot, so the needle carries some of the alcohol with it. You should wash your hands, use the alcohol wipe to sterilize about a 4 inch circle on your thigh and then prepare the auto-injector. If you blow on the skin and it feels cool or cold, there's still alcohol there and you should give it another minute to dry. Done properly it hurts no more than the flu shot.

I'm glad it's worked so well for you. I've been disappointed by so many treatments over the years, it's wonderful to finally have hope for a stable remission.
Posted 10/25/2016 2:41 PM (GMT 0)
Franny- yes I've learned to not read the horror stories online because they make my anxiety worse! Before my first colonoscopy I read horror stories, bad idea. I was so nervous I was shaking so hard they kept putting blankets on me because they thought I was cold and shivering lol. And steriods worked at first for me but eventually wasn't controlling my flare, I also gained 40 pounds and became unrecognizable! I hope humira is the drug for him and he can live a normal life and play sports again!


Richard- yes I always leave the pen out at least an hour before I inject. And I always wave my hand across the part I just used the alcohol pad on until I feel no more coolness. It may also be because I am riddled with stretch marks on my legs from rapid weight gain from steriods and it's hard not to inject into the scar tissue, probably causing more pain.

I once made the mistake of injecting the pen too soon after taking it out the fridge because I lost track of time and thought I had taken it out sooner than I actually had. Worst pain ever! Now I put an alarm on my phone lol
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