Why do I read crap on the internet?

[mom5272]

So, I went to the Dr today due to my major skin issues on 6mp and they are recommending me to go on Humira. I felt positive and left there..came home and opened my Facebook and CCFA had posted an article about fungus and CD. So, I read it and see 3 people write that they got cancer while on Humira and now i'm scared to death to switch.

I hate this disease and these medicines! Why do I read this stuff of the internet!
UGH!

 

[wild_one353]

There is probably more people that didn't get cancer on humira that aren't saying anything. not saying there wont be side effects but just saying lots of people taking this stuff I'm sure hundred of thousands of people. Why should only 3 people be the basis of your opinion? Read some scientific studies if anything. You are more likely to get cancer if you don't treat your IBD.

 

[my little penguin]

Facts
I have a kid so bear with me
Risk of death for kids in US under 14
By car 1 in 250
By drowning 1 in 1000
Average person on the street getting T cell lymphoma without ibd 2 in 10000


Now the risk of T cell lymphoma with biolgics combined with immunosuppressants
Is 6 in 10000

6-mp which you were on for years has a high risk when taken all by itself of lymphoma

Tylenol amoxicillin etc...given to infants yep
Steven Johnson syndrome which can be fatal and causes liver disease

It's all about risk vs benefit
Your doc has determine that your benefit of taking the drug greatly outweighs the risk from taking it

My kid rides in a car every day and swims competitively so
Much higher risk there than humira
Which he has been on with mtx for almost 5 years and remicade prior to that

 

[my little penguin]

RESULTS: Eighteen studies (among 4383 citations) met our inclusion criteria. Overall, the SIR for lymphoma was 4.92 (95% CI, 3.10-7.78), ranging from 2.80 (95% CI, 1.82-4.32) in 8 population studies to 9.24 (95% CI, 4.69-18.2) in 10 referral studies. Population studies demonstrated an increased risk among current users (SIR = 5.71; 95% CI, 3.72-10.1) but not former users (SIR = 1.42; 95% CI, 0.86-2.34). Level of risk became significant after 1 year of exposure. Men have a greater risk than women (relative risk = 1.98; P < .05); both sexes were at increased risk for lymphoma (SIR for men = 4.50; 95% CI = 3.71-5.40 and SIR for women = 2.29; 95% CI = 1.69-3.05). Patients younger than 30 years had the highest relative risk (SIR = 6.99; 95% CI, 2.99-16.4); younger men had the highest risk. The absolute risk was highest in patients older than 50 years (1:354 cases per patient-year, with a relative risk of 4.78).

CONCLUSIONS: Compared with studies from referral centers, population-based studies of IBD patients show a lower but significantly increased risk of lymphoma among patients taking thiopurines. The increased risk does not appear to persist after discontinuation of therapy. Patients over 50 have the highest absolute risk of lymphoma per year on thiopurines, while men under 35 may also be a high risk group. More study is needed to precisely understand groups highest at risk. The risks of lymphoma and potential benefits of therapy should be considered for all patients with IBD.

From
https://www.ncbi.nlm.nih.gov/m/pubmed/24879926/


This is the med your currently on correct ??

 

[mom5272]

Thanks for keeping me sane. I'm going to go with the Humira after my colonoscopy next month and pray for the best. You all rock!

 

[ronroush7]

Sending you support and prayers.

 

[If*]

Hi, likely because you are trying to make an educated decision. It can be difficult when you are the one who resides in your body and gets to be responsible for the outcome.

I get frustrated, to put it nicely. Especially when continuously reading from a poster on here who almost feels to be pushing meds, with if u don't your more likely to get cancer. Statistics are numbers that can be applied in a vast amount of error to accuracy. Some of us are out of or are limited to options med wise, or have already had one form of cancer or more, have situations that could be made worse as the warnings are written out, and a slew of after effects from possible meds already taken. I believe we are just trying to survive, and no one should be trying to scare anyone into doing or not doing. The 'you might get cancer' if you do or don't is a rotten 50/50 choice for those of us who actually have a form of ibd. Have you ever heard the 'you read the warnings, you knew the risk, and you wanted to take it'? Medication is a very big decision and should be taken seriously. So, that's why you probably read things... It's your body and you are responsible for what you put in it. Not the ones who are not in your body saying do it, don't do it, if you do, if you don't. I am sorry but it is difficult being the one who is actually faced with the choice and lives with the outcome. You are educating yourself, trying to make the best decision for you.

be well

 

[Cat-a-Tonic]

As Wildbill alluded to, people don't tend to flock to the internet to talk about it when their medication is going well and everything's fine and they don't get any side effects or cancer from it. So there tends to be an inordinate amount of horror stories out there just because of that. For every horror story you read online, just remember to take it with a huge grain of salt. For every horror story, I always presume that there are thousands more people out there who aren't saying anything because everything's going great and there's nothing to really say.

The forum is like that as well - a lot of times, people come here when they need help, advice, support. Then they tend to drop off the forum or at least are less active on here when everything's going great, because they no longer are in dire need of help and support. It's just natural. But it can lead to a somewhat skewed view of things when you feel like all you're hearing is horror stories and nothing good.

 

[If*]

Catatonic, your right. On some forums we do hear the horror stories, but there are also success stories. No 2 people are exact, seriously when it comes to ibd, meds etc.

3 people with cancer is a big deal to me, they are lives, people who are suffering further, touched by an outcome and the shoulder shrug is insensitive, but we seem to be living in insensitive times, it's all about me ego driven. Number 4 will get to feel the same oh well, just a number which is total bs.

be well.

 

[Sophabulous]

I agree with Cat-A-Tonic. I work in customer service and some days it's all moan moan moan. My old boss had a good phrase, nobody ever calls their network provider to tell them what a good phone call they just had.

I have just started azathioprine and the nurse went into great detail about the statistics of lymphoma etc. To be honest for me personally anything is better than how I've been the last 12 months. It's all about how you feel and if you can put it to the back of your mind and enjoy life now.

Sending good thoughts, i know it's easier said than done but try not to dwell on it x

 

[Julia S]

Mom5272, another reason for you to be less worried would be that the risk of cancer on these medications is really tiny and increases with the number of years of use (its still very small even after years of use, though) and seems to lessen again after you stop a medication. The next two years are bound to bring about more drug options for CD patients, however, so you might only be on Humira for a short time! I've been trying to read up on the drugs that are closest to market and Mongersen, for instance, seems to be doing really well on trials and, according to the agency Credit Suisse, is likely to hit market in 2018. There is also the RHB-104 trial results coming in at the end of this year or beginning of next year which, if promising, might mean AMAT will be another treatment option as of 2017-18 as well. And then there are the vaccines! I'm rambling. I guess I just wanted to say that I agree with everything Cat-a-tonic and MLP said and to add that soon we'll have more options so the risk you take, which is tiny, might not be for too long anyway. All the best!

 

[mom5272]

Thank you so much everyone! You all brighten my day! I've been on 6mp for 18 years with no side effects (except skin) so far so I feel I really am blessed.