Side Effects/Cancer with Humira?

[KaylaRose]

Hi everyone,

My mom called me today freaking out because a customer of hers (she owns a wig shop/hair salon) came in who was just diagnosed with cancer that she believes is due to the Humira she's been taking...

Now, I've been on Humira for about 3 years, and haven't really had any side effects besides a little joint pain, and to be honest I didn't really pay attention to the side effects until she called me. I did a little research and I don't know if maybe I had forgotten or maybe my doctor didn't tell me but I definitely did not realize that there was an increased risk of cancer while on Humira.

I guess what I'm curious about is if anyone has had any adverse side effects, or heard anything about the risk of cancer while on Humira, because I'm not going to lie I am freaking out a little.

Do I stay on Humira, or do I go off of it and try to find another route? Humira was a last resort for me after trying various combinations of other pills, and surgery being out of the question due to the severity of my inflammation and the fact that I don't want to be stuck with a colostomy bag for the rest of my life considering I'm only 24 years old.

HELP!

 

[AuntieEm]

All the biologics show an increased risk in cancer. I believe some of the other drugs did too, though I would have to go back and check. The small increase in risk factors vs possible quality of life did not deter my choice in trying the drugs I have.

Are you having proper monitoring done?

 

[kiny]

It's a decision you will need to make for yourself.

The biggest issue with humira is that in some people it causes expansion of malignant lymphocytes, as long as lymphocytes are not malignant it's not an issue, but if they are and those people are on humira then people get lymphoma cancer, and that cancer is fatal.

Why is the risk so much higher with humira? Because humira modulates which lymphocytes survive and which don't, if there's malignant lymphocytes and humira causes expansion of those specific lymphocytes then in some people it results in cancer.

They're serious risks but they happen in very few people, you should discuss those risks with your doctor.

 

[ron50]

The other ca issue with humira is skincancers. Most people really don't think about the sun and the damage done to their skins over the years. The trouble is that even tiny little basal cell carcinomas are malignant. Not aggressively so but malignant none the less. I was on methotrexate twice in the past five years. It was not for Crohn's but for severe psoriatic arthritis and an unknown auto-immune disease effecting my kidneys. I am fortunate that my rheumatologist is an ex oncologist. I developed a small spot on my face . I asked him about it and he said to have it removed asap. I did so the skin specialist thought it was asimple bcc . It wasn't ,it was micro-nodular basal cell carcinoma. they go deep and invade the nerves. The cancers spawned by immuno-suppressants tend to not be common and are quite nasty. The solution is to be aware ,if you find anything unusual be it skin lesions ,lumps ,sore areas that never get better ,see a doctor .
I saw my nephrologist today. I had an echo cardiograph a couple of weeks back. It showed a few problems. I have to get a stress test. We agreed that when I see my rheumatologist next week I will probably start humira. My kidneys are leaking like a sieve,you can lose .015 grams a day of protein thru your urine I am losing 4 grams. My kidney specialist said we would try the humira for arthritis//auto immune but if it does not show signs of working i am going straight on cyclosporine. I don't want any of it as a colon ca survivor I am at extra risk. Unfortunately my heart is struggling against the fluid build up in my lungs and stomach.Protein loss causes oedeema.
In summary Kayla You need the humira. There are things that you can do to help. Avoid lots of sun. Be aware of your body. Be vigilant,not paranoid just vigilant. Cancers are not that common at the levels of immuno-suppression you are on. People who have transplants and are on massive immuno-suppression make up most of the statistics for ca and immuno -suppressants,,,Hugs Ron.

 

[KaylaRose]

Thanks for your input everyone.. AuntieEm, I am being monitored very closely so I guess that's a good thing, I do trust my doctor and have worked very closely with him for the past 6 years that I've had CD.

I am a little more at ease now, I do plan to speak with my doctor again after my MRI in march to see if there is any scaring.

 

[Johnnysmom]

Our Dr said that the risk of Cancer is 2 out of 10,000 and biologics and immune modulators double that risk to 4 out of 10,000. 1 out of 100 is 1% so you have a very small risk, even though it is double.

Your chances of dying in a car accident are 1 in 260 in the United States.

This is an excellent article that explains all of the risks very well.

www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Send it to your mom, I know as a mom I felt much better once I read this.

 

[IAmTheWalrus]

That's the article I keep in my signature. Just for perspective. I see moderator status has changed Kiny's posting. No more scaring people half to death.

 

[BayAreaChronie]

I did read that so far no cancer was noted from a patient who was taking Humira without previously taking remicade/imuran. This is probably because humira is newer than Imuran but hopefully Humira has a better record than Imuran on cancer.

 

[KaylaRose]

I am also currently taking imuran.. I guess I should look into that one too. My doc said that the imuran works with the Humira to help keep things balanced or something like that..

 

[Michelle89]

I am also currently taking imuran.. I guess I should look into that one too. My doc said that the imuran works with the Humira to help keep things balanced or something like that..

I have been on Imuran for a couple years but recently it hasn't been doing it's job. After a flare in December I've been put on humira. My doc has said the same thing and wants me to stay on the imuran along with the humira for at least 6 months. I admit it does make me a little nervous.:shifty: I do have regular blood work and just pray if there is something wrong that they find it as quick as possible. Good luck to you.

 

[HeliGuy]

My rheumatologist explained to me that recent studies have show people with Auto Imune diseases have a much higher risk level of getting cancer. She has been using these drugs with great success for 10yrs and has not had a problem with cancer in any of her patients, Although she only uses Humira and not remicade.

She said they dont know for sure if being on TNF blockers actually increases the risk, or because people with imune problems already have a greater risk.

Im not trying to downplay the seriousness of the issue. As she even said the jury is still out. Because of a few rare cases they are required by law to put these warnings on the box, brochures. It is a little scary sometimes as these medications come with the strongest warnings the FDA has.

I know this wont ease your mind, but its definitely a personal decision between you and your doctors to weigh the risks and benefits. It has been a miracle drug for me I am willing to take the risk to have my life back.