New doctor said something interesting yesterday

[muppet]

Yesterday in Boston Sarah's new doc said something interesting (I'm still deciding whether I like him.) We were discussing increased 6mp and whether it would be effective and what the next option would be with surgery and Humira on the table. But then the doc said that Humira doesn't work well for UC patients (Sarah's diagnosis is still *technically* UC, though I haven't bought that for years). He says that with UC patients only about 20-25% of them get a sustained remission from Humira (I wonder if those 20-25% are Crohn's patients in disguise?)

Anyway, I don't have any concrete evidence that what Sarah has is Crohn's. Only strong suspicions. There was an antibody marker in a Prometheus test that indicated possible Crohn's according to her previous GI, but apparently it's not a strong correlation (yet). I'm not even sure of which test date and which marker it was. I should be keeping notes at this point but I still don't (except for the blog, now). BUT, isn't Humira a more or less identical mechanism to Remicade? Doesn't it block the same TNF that Remicade does? Sarah had a MIRACULOUS result from Remicade at first. She went from bleeding to death in the hospital and on the verge of emergency surgery to being discharged home with a little prednisone the next morning. Shouldn't that be an indicator that Humira is a good bet, and possibly, if the current GI is right about efficacy for UC, that she probably actually has Crohn's like I've suspected for years?

 

[muppet]

He also made an offhand remark about combining 6mp with allopurinol being equivalent to "doing somersaults to get things to work" and while he otherwise tried to be very diplomatic about everything, he pretty clearly is pro-surgery for Sarah (but I remain convinced that her UC diagnosis will quickly become a Crohn's diagnosis and then she'll have the disease AND no large bowel.)

We'll cross our fingers that the increased 6MP will work and if that doesn't, I guess I'll push the Humira option. If she gets the surgery and her diagnosis converts as I suspect it will, we'll be on Humira anyway.

 

[muppet]

After some reading, apparently Remicade is approved by the FDA for UC but Humira is not. That seems strange to me. I was under the impression that they had the same therapeutic mechanism. I need to do some more reading.

 

[sunflower]

Drugs have to go through a process to be "approved" for diseases that weren't originally "approved" during the trials. And that is the limit to what I know about the process. Just like Pentasa and Asacol have the same "medicine" some people do well on one, some another. Remicaid and Humiera are both the same class of drugs, but as you know, each drug is differnet for different people - and even for different diseases.

 

[Ian]

I've heard of a number of people in the US on Humira for UC. I wonder how if it's not approved for that? I assumed it was.

My dx is still unclear too - UC or Crohns Colitis (no small bowel involvement) and I'm on Humira (had a Crohns colitis dx at the time but it appears to be indeterminate again after a recent scope). It's definitely not approved for UC here in the UK, so I'm wondering what would happen if they ever managed to get a firm dx and it comes out as UC. Will they just cut me off and leave me to get sick? I want to ask but I also don't want to put ideas in my doctor's head lol.

 

[butterfly35]

You do not want to mix ANY TNF-blocker with 6MP. The blockers are miracle meds but dangerous. Adding to 6mp has ended in fatal results. Please see my earlier posting. There are many, many fatalities not reported. Unless the treating physician can directly link the cancer to the tnf-blocker, it frequently goes unreported. My only child is one Humira right now (after a year on Enbrel, methotrexate, prednisone) and I am taking him off it. It's just too much of a risk. I don't know what to do anymore. He rapidly declines off the tnf-blockers. I just don't know what to do. Something in my stomach tells me not to keep giving it to him.

 

[ThanksP]

You do not want to mix ANY TNF-blocker with 6MP. The blockers are miracle meds but dangerous. Adding to 6mp has ended in fatal results. Please see my earlier posting. There are many, many fatalities not reported. Unless the treating physician can directly link the cancer to the tnf-blocker, it frequently goes unreported. My only child is one Humira right now (after a year on Enbrel, methotrexate, prednisone) and I am taking him off it. It's just too much of a risk. I don't know what to do anymore. He rapidly declines off the tnf-blockers. I just don't know what to do. Something in my stomach tells me not to keep giving it to him.

I can understand that some of the warnings that come with these drugs are scary. I also understand that there have been some reports of lymphomas that are assocaited with any immune suppressing drug. But your statement is rather alarming, and I'm wondering how you could possibly substantiate your claims. If these fatalities are unreported, than how would anyone know about them? Please, I'd be interested in hearing more concrete information on this...if it's out there.

 

[sunflower]

Wow, butterfly. How will you control the disease without the meds? I think it would be scarier to let CD or UC run its course and wreak havoc. There were a lot of deaths when the biologics were first being introduced, but it happened when people were using other immune suppressing drugs - not so much when they were alone. Don't let the drug warnings scare you unnecessarily. Almost every drug on the market will have some people develop cancer while they are taking it.

 

[beth]

butter35: I can understand you have concerns with the drugs your child is on, however telling people they can't mix anti-tnf drugs with other immunosuppressors is not exactly helpful unless you are their doctor or physician is it? I'm sure they have enough things to worry about than emotionally charged posts from yourself. By all means put what you have say in a seperate thread of your own, as you have done.

 

[muppet]

You do not want to mix ANY TNF-blocker with 6MP. The blockers are miracle meds but dangerous. Adding to 6mp has ended in fatal results. Please see my earlier posting. There are many, many fatalities not reported. Unless the treating physician can directly link the cancer to the tnf-blocker, it frequently goes unreported. My only child is one Humira right now (after a year on Enbrel, methotrexate, prednisone) and I am taking him off it. It's just too much of a risk. I don't know what to do anymore. He rapidly declines off the tnf-blockers. I just don't know what to do. Something in my stomach tells me not to keep giving it to him.

TNF blockers are certainly scary drugs but you're being a little vague and alarmist here. "Unreported" is a very nebulous claim as well. Not every patient has their data reported back to a pharma company or the FDA anyway outside of a study.

If the TNF blockers are all that's working for your son and you know he will get sick without them, then I think it would be irresponsible of you to discontinue based on fear. The *primary* effects of allowing his disease to go untreated are far more dangerous than the potential side effects of a TNF blocker, including a much increased risk of cancer.