Are Clinical Trials Necessary? *Updated Repost*

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patient's life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

‘any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without clinical trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself. Imagine diseases or conditions like, heart disease, cancer, Alzheimer's, Parkinson's, Crohn's/colitis and now Covid-19 WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.

Let's take me for example. I was on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patient's weight. So I was at about 10 mg/kg because I had an ongoing problem with fistulating perianal disease. My body eventually developed antibodies to the medication and was taken off it after 8 years.  I was put on Humira for two years until a forced Government non-medical switch to the Humira biosimilar.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing it in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, even though my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was more than 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I was on Remicade for 8 years and it was a "godsend", for me. I regret my decision so many years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be by improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's Crohn's and colitis foundations. Many will have links on their websites to pre-screening. You might get declined, but it just means you don't meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research

COVID 19 3rd Dose Booster

Crohn's and Colitis Canada has recommended that people who have IBD on medications that suppress the immune system be included with other immunocompromised people getting the 3rd booster shot in the fight against COVID 19.  See here:

COVID 19 BOOSTER

As does the Crohns Colitis Foundation:

COVID 19 BOOSTER

And Crohns and Colitis UK:

COVID 19 BOOSTER

Please contact your local governments to push adding immunosuppressed IBD patients to their 3rd dose lists.  With the Delta variant becoming more and more prevalent, and with the millions of people NOT vaccinated (for whatever reason) the risk of catching COVID is still there.

Gutsy Walk 2020

 There is one more week before the Gutsy Walk  on August 23

I'm ready to go, walking around my neighborhood this year with my FitBit to track my steps. There's still time to support my walk to help with the fight against Crohn's and colitis.

You can support me here:

GutsyWalk2020/vernonlaine

Let's help make IBD (Inflammatory Bowel Disease) a thing of the past !!

Crohnie Quote of the Day

"You don't need to be perfect, just be better than you were yesterday"

.

Crohn's and Colitis Virtual Walk 2020

The Crohn's and Colitis Canada Gutsy Walk was suppose to be today, but COVID19 has changed when and where we will be.

It will now be virtually on August 23, 2020. I'm going to be walking around my neighborhood with my Fitbit.

I have my shirt ready...

I have my mask ready...

I hope everyone will help me raise money for more research and programs for Crohn's and Colitis Canada.

You can donate here...

https://crohnsandcolitiscanada.akaraisin.com/GutsyWalk2020/vernonlaine

I thank everyone in advance!!

Let's find that cure shall we!!

Humira: Day 136

Humira has been an interesting adventure to say the least.
Oh, don't get me wrong, it's still doing the job, but I've had some weird "reactions" these past few injections and other IBD'ers I've talked with say it's strange as well.
So, let's back up...

I started Humira January 2 of this year without any fan fare, all good, pretty boring. Everything was pretty easy and no problems. Since then, I've had what I would call "reactions" after injecting.
Now, I don't know IF it's related to the Humira, but it's too much of a coincidence.
I do my injections every two weeks and I alternate between my left and right side of my abdomen.
Back in April, on back to back injections, I had Rigor attacks. A sudden, and I mean sudden, feeling of cold and chills, uncontrollable shaking and fever. The difference for me though, is I'll keep up with the shaking until I throw up and it slowly eases. It takes several throwing up episodes and hours later, it's gone.
What I'm left with though, is massive joint pain in my knees, hips, neck and jaw from the shaking.
It takes several days to fully recover.
My last two injections I have put in my thigh and no reaction, so I'm wondering if injecting into my abdomen is causing a reaction with my Crohn's. The throwing up makes me believe its causing a "blockage" type scenario.
I usually get Rigor attacks one a year or more before these last episodes. Now I've had two in as many months...weird to say the least. The only common factor is the Humira.
I have an appointment with my gastro soon, I'll talk with her more about it and hopefully I'm not the only one. Wouldn't be the first time.

But hey... it's always nice to be first at something....right?!

Quarantine Part Two

You'd think with all this time at home, there would be lots of time to make blog posts, but we've been spending time with each other.
Our 2 week quarantine was up last week, but we're still staying home, mostly, so no one risks bringing it home. We only go out for groceries, or deliver groceries, and that's it. My wife has been doing all the grocery shopping so not to put myself at risk. We are very careful still, even to the point of wiping down groceries before bringing them into the house.
It's amazing what you can get done around the house inside and out, when you dont need to go out.
It's still a little cold out, but I started prepping our veggie garden the other day and planted seeds in my little mini greenhouses. Luckily, my health hasnt turned for the worse, other than the pesky peri anal abscess that doesnt seem to want to go away. But, I know how to deal with it, as I have been since 1990 when my first peri anal abscess appeared.
It's interesting how quarantine in 2020 is looking more and more what life was like back in the 1970's. Take away all the devices and internet and you have the 1970's. We've reverted back to a time when you ate at home, around the dinner table... together. The board games and puzzles are coming out of the closets, basements or attics to play together... as a family. More importantly, we're talking more. Using the telephone to talk to people, no texting.
People are re connecting with family and friends.  People arent worrying about "me" as much and focusing on others.
The question now is, will people remain focusing on others, or will they revert back to "me" attitude? I guess we'll find out when all this is over.

In the meantime, cough or sneeze into your arm, keep social distancing and for God's sake
WASH YOUR HANDS!!

Quarantine

We are in Day 9 of a 14 day self isolation quarantine because we were in Orlando, Florida visiting DisneyWorld.
I'd like to point out that quarantine is not that hard, for all of those people whining they cant go out.
Think of the consequences. This virus will never go away if people go out and socialize and not keep distance from others.  I akin it to the old 1980's Faberge shampoo commercial, IF YOU DON'T quarantine...

You infect two friends (2) and they infect two friends (4) and they infect two friends (8), and so on (16), and so on (32), and so on (64)... well, you get the picture. You can see just how fast this virus can spread.

In the 9 days so far, we have done alot of things around the house. We've cleaned out the garage, cleaned gutters, power washed all the cement outside, washed the cars, thoroughly cleaned out and disinfected the inside of the cars, played games, puzzles, watched movies, caught up on tv shows, etc.
I still have to clean one more room, but I have alot of time still.  The point is, don't complain, get things done. Read a book... WRITE a book, whatever it takes.

I'd like to take this time to thank the doctors, nurses and all essential service workers out there on the front line.
I'd also like to thank all those friends and family that have come to our need with groceries, etc. When all this is over, I have alot of lunches, dinners or coffee "dates" to plan.
Everyone needs to do their part at this time. Cover your mouth and nose, keep social distance, self quarantine if needed (or even not), but most importantly, WASH YOUR HANDS !!!

And finally, to all those out there NOT heeding warnings, you don't think you're going to get it... you don't know that. Everyone is susceptible. You could still carry it and pass it without having symptoms. Listen to your Health Officers or Surgeon Generals, and not those who have no idea or any knowledge of viruses or pandemics. Serious times require serious measures.

I am immune compromised and even though I have no symptoms, I am in quarantine with my family.  To be honest, I will still probably stay at home because it's safer. I don't trust others out there in the world. I don't trust they will follow the rules. I am very anxious about my life right now and that of my family.  PLEASE, follow what the professionals are telling you. Certain leaders... well just one actually, *cough* Trump, is making everything worse and I feel for my US family and friends.

Please take a look at links below for COVID 19:

Canada - Health Canada
USA - CDC
UK - NHS

Also, for us IBD'ers, go to your country's Crohn's and Colitis sites.

Canada - Crohns and Colitis Canada
USA - Crohns Colitis Foundation
UK - Crohns and Colitis UK

My final thought on this matter.
To all those out there around the world who think COVID 19 is a hoax?   

Go "F" yourself !!