When my son was diagnosed with Crohn's disease three years ago, I was so grateful to have discovered this Forum. I knew nothing about the disease and I found here supportive, kind members who patiently helped me understand. So, I am saddened Guerrero, by your dismissive answer to Nicola’s blog. I personally found it to be powerful and compelling.
The blog was written in response to terribly tragic news, by someone who has clearly experienced the ravages of this disease first hand, and who has seen the ultimate consequences, and certainly not out of “convenience”. It conveys frustration and anger that all of us should be feeling. It also communicates profound sadness as someone very dear to her, a parent of a Crohn's child, is experiencing a horrific nightmare.
I don't believe it helps anyone to hide the truth. Biologics like Humira can be a godsend, but the reality is, they are also dangerous. We can disregard the potential side effects, after all what is one or two percent? Until of course, it is YOUR child, or your spouse, or sibling, etc.
Before I am torn apart here as well, I want to give a little bit of background. My son is on Humira, and he is in remission. I am grateful that it is working, but also very well aware of the potential side effects and they terrify me.
When he was diagnosed, they threw every drug at him. He had been a healthy child, taking only Tylenol every once in a while, then suddenly his bedroom shelf resembled a drug store, covered with bottles, prescriptions with long, weird names. None worked. My once funny, healthy boy was quickly turning into a skeleton.
I have had an aversion to taking meds ever since I witnessed first hand the ravages that they can do to a body, having a very close family member suffer from an incurable condition. People take them to help them get better, but often the meds add other woes to an already sick body. So, I was frightened to see suddenly my boy having to down those pills, but we had no choice.
One of the meds was Cipro. I had no idea of the risks associated with it. Within 12 hours of taking it, my son suffered excruciating pain, paralyzingly him. I started to read the inserts and discovered this specific side effect. I ordered him not to take anymore. I was angry. It turns out Cipro has a black box warning, but we didn't know….
As my son’s condition continued to deteriorate, we finally but reluctantly settled on Humira and his pain subsided, sending him into remission. He nevertheless remained on all of the other drugs as well. Then his liver started showing signs of stress. So, one by one, except for Humira, every drug was stopped, a process of elimination until the very last one, which was Pentasa was found to be the culprit. During this time, his doctor kept insisting it was NOT Pentasa, but in fact it was!
Despite his reaction to Cipro I would have welcomed the opportunity to try AMAT, because although they are powerful drugs and not without their own nasty side effects, I don't believe rare forms of incurable cancer is one of them. I know this treatment doesn't work for everyone, but I have read enough personal accounts to know they work for many. Biologics only work for 1/3 and among those, they continue to work for only 1/3. I know that for AMAT, the response rate is much higher. So, it seems the blog raises a very good question, why don't doctors already offer this treatment? Why do people have to hunt down those who will prescribe it? Contrary to the claim that there is no proof, there have been numerous peer reviewed studies confirming the efficacy.
I am a firm believer that nothing should be hidden, knowing the truth is essential, and legitimate questions do not confuse me, they instruct me. My son’s doctor refused to consider that it was Pentasa causing liver stress. Thanks to this Forum, I learned that it could and I questioned her decision. She was also surprised about Cipro… Questions keep the medical and scientific community on their toes, and it is how we move forward. People have the right to know about ALL possible treatments and to make their decision with the help of a well informed doctor. Because ultimately we all want the same thing…..a CURE. Nobody should be satisfied with anything else.
