TNF Blockers

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Not cool to start scaring people I think, because the risks are relatively low. But you are right that we need other drugs, these drugs are not the answer, we need to determine what anti-biotics work, we need to determine how many have MAP and how many have E coli infections, so they can all get off TNF blockers and onto something better.
 
I agree, these drugs carry significant risks.
I am sharing the concerns of the FDA, and wish to cascade this to the forum members.

I was offered Humira.
In my opinion, they can keep it. i will live with the Crohn's
 
That link just states that the FDA is asking the manufacturers for enhanced reporting. That's not "SCARY!!!" that's due diligence.
 
Say what you want about TNF blockers, they can work magic in some people. Remicade saved me from losing my colon. My fistulas closed in 4 days, and I was in remission almos the entire time I was on it. Every drug has a risk vs benefit analysis that you should do. Even though I ended up reacting to it, I dont regret taking it.
 
Thank you for posting toneloc, it is always beneficial to be well informed.

I think what we need to mindful of though is that some people don't have a lot of choice in treatments for their Crohn's. Some people have time on their side to make less risky choices, some people will never experience severe Crohn's, some people will never have life threatening side effects from their Crohn's, and on it goes.

I don't think anyone makes the decision lightly to go on these type of drugs and given a real choice of not needing to go on them they wouldn't. Someone once asked if Crohn's can kill you and the answer is yes, whether one wishes to call it Crohn's or the complications of Crohn's matters little because you are dead either way.
My daughter was undiagnosed when she came within a whiskers breadth of dying from this disease. My son was diagnosed with mild to very mild crohn's last December and yet we found ourselves in a situation similar to my daughter's except that we caught it early and were aware of it. If my children didn't have treatment and surgery they would both be dead. I am well aware that born in an earlier time this would have been their fate.

I love that both of my kids are in remission but I loathe like you wouldn't believe that they swallow Imuran every...single...day...but what choice do they have? Life or death.

Dusty. xxx
 
Crohns almost killed me when my bowel abscessed, perforated, and I went septic. They told my parents I had a 50/50 chance of making it. Crohns can be near fatal for some.
 
I turned down humira against doctors wishes since the 6mp put me in remission. I told him I would take it if I was facing that or surgury. I'm still on 6mp but. Im not stoked about it and get lots of infections. May come off really soon.
 
Lydia said:
Crohns almost killed me when my bowel abscessed, perforated, and I went septic. They told my parents I had a 50/50 chance of making it. Crohns can be near fatal for some.
Click to expand...

Same here Lydia

When i underwent hemi colectomy my bowel was perforated in many sections,had 3 fistulas not found before the op,abscessed & my gut was a horrific mess(my Dr's words).

My parents were told i'd had 'a very rough time' in theatre.If i hadn't had that op i would not be here to post on this thread.

No one listened to me for a long time - which in the end nearly put my life at risk.

If the crohn's had of been treated earlier........!
 
Hi
Thanks for your well balanced responses, they are appreciated.
I saw my consultant who advised me to go on it as I am not responding to 6-MP, Pentasa & the host of other drugs I have to take to counter the side effects.
The Doctor said that there was very little risk in taking the Humira & that there were 100's of people in the UK taking it without probles/side effects, so I guess when I found that article & subsequent articles on the FDA site I flipped :ybatty:

It concerns me that if the medical profession do not always highlight the risks associated with these drugs, then people are not able to make an informed choice and balance risk:benefits of taking them. I am sure it has helped many people, and by reading the feedback from some of you this appears to be the case.
I am bleeding very heavily & the diahorrea is flowing like water, the pain is indescribable & I feel totally washed out.
Not sure what to do.
I am so confused-any advice as to my next step?
 
What the doctor says is right BUT you are right also, although the serious side effects are uncommon they are a risk nonetheless and scare the bejesus out of us, so you are not alone there.

The decision you are facing is awful but I guess the only thing I can say is, by the symptoms you are describing you can't continue to go on this way. The next logical step is to move to the biologics but whatever you decide you need to bring things under control soon. My fear in leaving things effectively untreated, due to failed meds, is that you may reach a point where you really don't have a choice...it is far better to have control in your hands rather than being backed into a corner.

Perhaps you could speak to your doc and ask about the risks you are facing if you stay in your current condition. It may help put some perspective to things.

Dusty. xxx
 
Cheers Dusty
I have emailed my Dr for a review appointment ASAP to discuss/agree my next steps and for him to explain ALL of the risks & benefits of any suggestions he may make.

Hopefully I will be sorted soon

Love to all
xxxx
 
Good luck mate and let us know how you get on...:goodluck:

All the best, :)
Dusty. xxx
 
Something to keep in mind too with the listing of these side effects:
1.The fact that the sample sizes are so small means that it doesn't take much for an increase to be considered "statistically relevant". In other words if out of 1000 people, 5 on TNF blocker get cancer compared to 3 in the normal population, this is a huge increase percentage-wise but not number-wise (if that makes any sense..)
2. People taking these drugs are compared to otherwise healthy individuals, i.e: people who don't have Crohn's! This fails to take into account the cancer-causing effects of an untreated Flare.

Part of my justification to myself for taking these meds..
Michael
 
stratford said:
Same here Lydia

When i underwent hemi colectomy my bowel was perforated in many sections,had 3 fistulas not found before the op,abscessed & my gut was a horrific mess(my Dr's words).

My parents were told i'd had 'a very rough time' in theatre.If i hadn't had that op i would not be here to post on this thread.

No one listened to me for a long time - which in the end nearly put my life at risk.

If the crohn's had of been treated earlier........!
Click to expand...

Yeah I had the hemicolectomy too, and a colostomy bag for 6 months. I was only on pentasa at the time and not really complying with taking it the 4 times a day, and not really taking good care of myself either, or communicating with my GI that my symptoms were getting worse. I thought I was just destined to have crohns and feel pain all the time. I do know now that feeling pain all the time, and being in a flare is not necessary, and that remission is possible.
 
Just done my Humira & Methetrexate jabs today. I know the risks but I'm desperate to avoid further surgery. They are monitoring my blood & I've been told anything untoward they will tell me straightaway.
I'm under no illusions, this medication together is a bit dicey but what choice do some of us have?
I'm pleased we live in a more informed world these days mainly due to the internet, but I just have to put this info to the back of my mind really & get on with it, I see it as the lesser of two evils.
Keep Well/Get Well everyone
Grant
 

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