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Why fear the Biologics?

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Posted 4/29/2011 12:05 AM (GMT 0)
It seems obvious, yes? But after doing some research I came across a great video on YT, well two actually. It seems eventually, depending on pricing I guess, that they will be the drugs of choice for many patients with autoimmune diseases, instead of doing the ladder of drugs i.e 5-ASA, Imuran/6-MP then Bio's. (Not saying the former drugs don't work, because they do)

This one :

http://www.youtube.com/watch?v=pi1L3x6Z4rc

Talks about certain cancers and association with Infliximab/Azathioprine and there has been only 16 reported cases, as of when the video was released, 15 of those cases where young males. Good video I suggest you watch it.

Also, this one: http://www.youtube.com/watch?v=tDZq_lRjA3I

It's about Infliximab and RA, but in this video the Dr. say's it could PROTECT against some cancers, maybe it's just the combo of both drugs that increases, albeit it's a rarity.

Just thought it would be interesting. :-)

Post Edited By Moderator (Nanners) : 4/30/2011 10:00:07 AM (GMT-6)

Posted 4/29/2011 3:26 PM (GMT 0)
Hm, that makes me feel better, even though I am a young male. My doctor wants me to start 6MP again, this def eased my thoughts.
Posted 4/29/2011 3:36 PM (GMT 0)
I fear them because if they fail, you better be ready for surgery. With UC at least.. They seem like the final step and many people only improve for a few months and then fail and then goodbye colon!! I am not ready for that. It just doesn't seem like a longterm solution. I've seen a few people who have taken Remicade for 5 years but that's about the longest I've seen. It also hasn't been around that long so I don't think the longterm effects are known 100%. Not to be negative but I don't like taking any medication so I will always have my worries.

http://csn.cancer.org/node/136135 - quite a few mentions of ibd and immunosupressents there. A lot of the posts are old but have to take into consideration that probably only a small % of the cases are on there. I am sure there are other communities out there with others. Seems like more than 16 probably exist.

Those are my fears. If you could help ease them, I would be thankful smilewinkgrin

Posted 4/29/2011 8:48 PM (GMT 0)

notsosicklygirl said...
I fear them because if they fail, you better be ready for surgery. With UC at least.. They seem like the final step and many people only improve for a few months and then fail and then goodbye colon!! I am not ready for that. It just doesn't seem like a longterm solution. I've seen a few people who have taken Remicade for 5 years but that's about the longest I've seen. It also hasn't been around that long so I don't think the longterm effects are known 100%. Not to be negative but I don't like taking any medication so I will always have my worries.

http://csn.cancer.org/node/136135 - quite a few mentions of ibd and immunosupressents there. A lot of the posts are old but have to take into consideration that probably only a small % of the cases are on there. I am sure there are other communities out there with others. Seems like more than 16 probably exist.

Those are my fears. If you could help ease them, I would be thankful [img]/community/emoticons/smilewinkgrin.gif[/img]

It is so refreshing to hear from a veteran of this disease who is not just a shill for the medical establishment and big pharma. Browsing thru these forums there is post after post from those who have been misdiagnosed or otherwise misled. Doctors are not gods. For example NJMOM was led down the primrose path by one of the best pediatric GIs in the country.

This forum can be a valuable resource to hear from others about their good and bad experiences with meds; and learn about the possibility of other less known therapies such as Rifaximin and LDN. We could at least become aware enough to ask our doctors.
Posted 4/29/2011 10:13 PM (GMT 0)
All I would say is don't fear surgery so much, it isn't the end of the world. Have a look at the ostomy forum and you'll find plenty of us who have had to have ileostomies and other such surgeries and find that rather than restricting our lives it has actually made it much better.

After years of suffering my ileostomy gave me my life back and more often than not is it the mental picture that you have to get over rather than the physical, it is a scary thought having an ostomy but it can open up a whole new world of opportunities and especially for those with UC can bring complete end of symptoms and the need to take drugs.
Posted 4/29/2011 11:11 PM (GMT 0)
This is great info. I've been on biologics for 10 years. I get the fear of "what if" they fail because they all eventually will, but there's always diet - which I would try any day as a last resort before surgery. Specific Carbohydrate Diet saved me from surgery.
Posted 4/30/2011 4:05 PM (GMT 0)
I agree with stripey, surgery while not optimal isn't all that bad. So many spend years trying to avoid it, only to finally have surgery and wonder why they waited so long. Surgery gave me my life back, and I know many others on this very forum that have had the same results.

And notsosicklygirl, you have UC and at least for you surgery cures you! There is NO cure for Crohns even if you have surgery. jmho
Posted 4/30/2011 4:19 PM (GMT 0)
I understand that surgery isn't so bad but I also worry, what if I am misdiagnosed and I do have Chron's? My doctor always says I am "more consistent" with UC but I never feel like the diagnosis is 100% accurate.

The only problem with surgery is the long recovery. I worry I wouldn't be able to get any work done and I will get behind on my fianances.. It's hard to pull off when you are self employed and have a lot of bills.
Posted 4/30/2011 9:37 PM (GMT 0)
Its not the surgery or the medications that scare me.

Its the fear of not knowing what the future holds, and when I may feel better. Not having answers is what scares me. But I am learning to let go and live one day at a time.
I truly believe everything happens for a reason though.
Posted 4/30/2011 10:28 PM (GMT 0)
notsosicklygirl, the recovery isn't that long. After my first surgery to perform a loop ileostomy I was back at work 3 weeks later and that was only cause I had been so ill before hand. The second op to change it from a loop to an end ileostomy (couldn't have it reversed as colon completely knackered and I wouldn't have had it reversed anyway) I was back at work after 10 days. So it isn't always a long period of recovery, it depends on what you do for a living. I am an office worker so is easier, if you do a physical job then it will take longer.
Posted 4/30/2011 10:36 PM (GMT 0)
I feared the biologics because the track record of long-term side effects is not known. I knew I'd have to go on them at some point in time. But I didn't want to use them before I had children due to the fact that I'm afraid of passing it on to unborn children. I know there's tons of studies that says it doesn't, but I didn't want the risk.

Though when I developed my fistulae and lost my quality of life for several weeks. The future for me looked pretty grim, so I made my peace and started the medication. I'm still worried about long term effects, children, etc. But I'd rather live a shorter time here and have a good life then live for 100 years, but not be able to enjoy them...
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