When you read the following article your view might depend on your knowledge of statistical methods, false positives, false negatives, and the fact that there are too many mediators and moderators (variables) that could also explain why certain people do not respond or “get better” with certain Crohn’s Disease Medications such as Humira or Remicade.
Getting better is not all or none. This news article that summarizes the journal results fails to mention that any symptom improvement at all in a patient with Crohn’s Disease most likely will IMPROVE Quality of Life.
“Remission” clinically is not the patient telling the doctor that they feel better. Instead remission involves colonoscopy, CT or MRI, blood tests etc. However, it is common and very possible that a person can feel “better or worse” than the test results indicate.
Due to all the potential variables we do not know about I find it a potential dangerous slippery slope for Doctors or Drug companies to deny trying a treatment like Remicade or Humira based on a genetic study. We do not know all the genes involved and even if we do – Genetics always explain about only 50%, the rest is environment, and other social and demographic factors that are UNIQUE to each person.
Crohn’s Disease affects all three layers of the intestine and current tests only look at the outer (on an x-ray, CT, or MRI), or inner (colonoscopy). The middle layer – which could be causing disease symptoms and disability is not being looked at.
Also, the small intestines often cannot be directly looked at on the inside layer even due to narrowing the colonoscopy must stop.
Trust yourself and find a good doctor you trust and work together as a team to find an individualized plan that will work.
Research looks at how events can be predicted in groups – it is unable to predict how an individual will react. Take a look at all the possible side effects or helpful effects of any medication and each individual person will have variability in what happens to them to one degree or another. For example, some people might feel nausea, others might feel fatigue, and another person might feel great!
This is my personal opinion and general scientific information. It is not intended to and cannot replace any advice or recommendations by your healthcare providers. You as a patient should follow medical advice and work with your doctor to make sure your healthcare needs are being met.
Many chronic health conditions require expensive medication for treatment just to allow for survival. Many would not have been able to access infusion treatments / other medications were it not for the financial assistance that has been provided by the drug companies themselves and other charitable organizations. Even with great health insurance including Medicare the patient is often responsible for 20% of the cost of a treatment or a copay for a medication. With medications such as Remicade, Humira, Insulin, and the like, that could mean hundreds to thousands of dollars each treatment. There is help! Read below.
Now many pharmaceutical companies have their own copay support programs.
I find the following website to be a great tool to find financial / copay help for almost any prescribed medication: Visit the link below:
If you are not able to afford your prescription medication for your health condition then please consult with your doctor’s office and they will be able to help you as well. It is a great idea to stay in contact with your prescribing doctor about anything regarding the medication or treatment.
Also, with open season coming up for the Healthcare Marketplace, you can always try to pick a healthcare plan that will cover more of your medication / treatment. Discuss with your healthcare provider and/or insurance broker.
Best of luck out there and I hope you can afford your medication!
I have heard it, you have heard, “oh no, it is raining outside, that ruins my plans… or why does it have to rain…” I have noticed a trend that many people make assumptions about the ability of the weather to “ruin” a day. This is not helpful thinking or entirely logical. Whether it rains or shines I can still enjoy my day and so can you. Reading and watching movies are enhanced by rainy days. Rainy day naps are wonderful. In fact, I particularly enjoy the rain, and that is because I decided I like the rain.
Wait… you can decide to change your thinking?
Yes, you can!
There are many years of research that supports the use of changing out thoughts to help influence our behaviors and emotions and in a positive manner. This school of thought did not begin with psychologists. However, currently if you want to do some reading look into Cognitive Behavioral Therapy (CBT), try to learn your new ABC’s from Rational Emotive CBT, or one of my favorites read about ACT (spoken like the word to “act” in a play), standing for Acceptance and Commitment Therapy.
I will skip over a lecture and simply state that it is possible to change one’s actions or behaviors, or thoughts and it can be good for you and modify or alter beliefs that work better for you or fit with your values.
So, I value being outside in nature. Rain is part of the natural cycle of weather and is important for LIFE, so therefore I like rain as well.
When I walk in the rain I think about those great times playing sports in the rain with friends or swimming in the ocean during a small rain storm as it made the waves bigger. Perhaps next time it is raining, instead of thinking the rain is a nuisance you will think – the rain is an opportunity to experience life, and by the way – if you get wet you will dry, and if you do not want to get wet you can use an umbrella – just beware of thunder and lighting and be safe!
I hope your day today is serene and peaceful as the scene below! Read on to learn more about your fellow humans! Below the surface many are suffering right now!
Today is a day celebrated by many unsung heroes around the world. People like me are in pain due to their chronic illness. They are your weekend warriors and you did not know it. In life we can not really see what is really going on with someone by looking at them. Have you ever seen a duck swim in a pond? They are graceful on the surface just gliding along! But below the surface they are paddling and moving around so fast – it is organized chaos.
So today when you walk around and see your fellow human being try to imagine that the person across from you might be going through something and you probably would not know. I think an important question to ask is: How is your health? How are you feeling? It does give the person the opportunity to return the social grace or really share. Also, people who do not feel good, are in pain or suffering often do not ask for help. When you say, call me if you need anything – most do not call
Offer specific help or ask, what is difficult for you to do? – Then help! If we all pay it forward it will make a difference!
Write your doctor’s appointment down in your calendar so you know ahead of time when you will be seeing your specialist or primary care doctor.
Keep a list of any medical appointments, hospital visits, or changes in medication and bring this to your appointment.
Bring in a list of your medications to your doctor’s appointments. Some physician offices will ask you to bring in a bag of all your prescribed and over the counter medicines. Be sure to ask your doctor’s office!
*****Write down a short list of a few concerns you want to discuss during your visit! For example if you have Crohn’s Disease:
Pain in abdomen (keep a daily log regarding your pain and what you ate, this can help your doctor)