Monday, September 30, 2019

Hemlibra Update & HIV Medication Changes

It's been a few months since my last update, but a lot has transpired since then, and I want to let my readers know my progress. Overall, I've been doing incredibly well in terms of health, labs and general well being. Living in Orlando, FL is a blessing in many ways, as my wife and I enjoy the many theme parks in the area. This means lots of walking, sightseeing, riding roller coasters and in many ways, living a normal and productive lifestyle.

On January 16th of this year, I embarked on a new journey on how I treat my hemophilia. It's cutting edge, and a latest therapy called "Hemlibra." Hemlibra isn't your typical intravenous infusion with factor VIII or factor IX synthetic replacement. It bypasses the factor VIII clotting cascade and binds together factor IX and factor X proteins to complete the synthesis of clotting. So in essence, binding two already existing proteins together, and allowing a patient with hemophilia type A with or without inhibitors to achieve almost normal clotting ratios. This does not mean that one is automatically achieving normal percentages of clotting factor as determined by a partial thromboplastin time (PTT) test. It simply means, your risk of bleeding is vastly reduced by 94-95% for further joint damage, physical injury, etc...

Since starting Hemlibra in January, I'm delighted to report some astounding news. Before I do so, let me just state on the record, I am neither endorsed nor affiliated with Genentech, and I am not a beneficiary of any of their programs. I am simply a patient on the product. Since my first infusion on Jauary 16th, I am delighted to report I have had absolutely zero bleeds;  neither joint, muscle or otherwise. It's very strange and very odd changing a habit and routine that's been ingrained into my very being the past 35+ years.

Old habits die hard. Not only do I have any bleeds, but I haven't had to puncture my veins since January (with exception of routine lab work) for hemophilia related therapy. Hemlibra is a subcutaneous injection. I also have not experienced site injection reactions either. What's even more strange, in all the right ways, is that I haven't a single bleed in 9 months. The longest I've ever gone without requiring factor VIII was maybe 2 weeks at most. It's truly a wonder drug.

Just to help paint the picture on my overall activity just for the month of September. I screen captured my walking totals for the entire month. As you can see, mid week's I'm less active with around 5-6,000 steps a day. On the weekends, things really kick up when I venture off to the theme parks where extensive walking totals are accumulated. Since being on Hemlibra, I can achieve upwards of 8 miles a day in walking at around 17K steps. It's unheard of! Of course, I'm sore the next day, but it's a good sore, one in which I know my body is getting exercise, my joints and muscles are working and I'm being extremely active. On previous therapies, I would be lucky to make it 4 miles without sparking a bleed in my right knee or ankles, which are my target joints. It's truly remarkable, and even though there are other organizations out there committed to spreading falsehood, and deceiving others from switching to Hemlibra, the premise of this post/update is to prove that whatever claims are being said, I'm living proof that the drug works exactly as it says it does. Move over "Big Pharma," there's a new player in town.

Lastly, this past week, my HIV doctor helped me make another big milestone transition in my life. I've been on Triumeq since December 2016, and now, just three years later, I'm switching to an all new standard. The pills shown in the picture show the size comparison to Triumeq (left) and Biktarvy (right). The reason for the switch was because of one component in Triumeq that has been linked to cardiovascular complications and even heart attacks in reported cases. That component is called Abacavir. Biktarvy is supporting a much safer tolerance and less toxicity that previous treatments for HIV can achieve. Biktarvy combines three drugs to create the cocktail barrier so the virus does not invade healthy immune cells. Those ingredients are bictegravir, emtricitabine, and tenofovir alafenamide. I am currently on day 4 of Biktarvy, and I'm happy to report no side effects at all. Previously on Triumeq, about an hour after dosing, I would feel drained, lethargic and zonked out. This happened every day for the past 3 years, and I directly associated that with taking Triumeq an hour prior. So far, Biktarvy is not doing of these mental lethargy issues, and I'm not noticing any other forms of reactions. In 3 weeks, I will go to routine lab work to monitor my HIV viral load and CD4 counts to see how the new drug is adapting to my system. Fingers crossed, and I will report back with any and all findings.

That's it for now gang. Thanks for hanging with me on this crazy and lengthy update. Please follow my social media channels on Facebook, Instagram and Twitter. I update my Instagram account constantly with more in the moment news and information. Follow me everywhere @istrive2thrive.


Friday, April 5, 2019

A Life With Chronic Pain (A Hemophilia Perspective)


The majority of my life, I've dealt with multiple aspects of chronic pain stemming from living with hemophilia. Until recently, therapies and research have shed new light on patients who live and cope daily with these ailments. Also, special guest and hemophiliac troubadour Ryan Seeley joins the panel to share from his own perspective. Join the discussion, and please share to those who could benefit.

Thursday, February 28, 2019

Advancements of Approved Therapies For Bleeding Disorders


With cutting edge research and technologies creating ripples through the bleeding disorder communities, gene therapy offers not just hope to patients, but possibly a cure within the next 4 years. We discuss the new drug "Hemlibra" and ground breaking new genetic clinical trials with astounding results. CLICK HERE to join the live stream on February 28th, 1PM Eastern.

Wednesday, November 14, 2018

Live Stream Discussion on Hemophilia

I took a huge step today and live streamed an open discussion and Q&A session on a new platform @getvokl. I opened up and shared my journey, and offered words of encouragement for those viewing. Check out the live stream in the link below.

Tuesday, November 28, 2017

How Medical Cannabis Helps Hemophilia Related Chronic Pain

I'm happy to report to all my faithful readers that I've currently been on medical cannabis to treat my chronic joint and muscle pain as a result of living with severe hemophilia. It's been a long process between going to the prescribing physician and going through the ordeal of establishing care via the new "Compassionate Use Registry" here in the state of Florida.

As a follow up from my post back in July, it took a little over two months for representatives up in Tallahassee, Florida to review and clear my application. But the first week of September, I got the final approval, and was able to finally order my treatment therapy.

I decided to go with "Trulieve" as my supplier, but there are many companies here in Florida offering medical grade cannabis products. Trulieve was recommended by my doctor as a reliable company, and I decided to take him up on that recommendation. On September 21st, my first order was delivered to my house. I was impressed by the employees, and discreetness on getting my medication to me. The vehicle was unmarked (non-branded), and the gentlemen were very prompt and on time. It's really worth the extra $20 for home delivery, knowing that it's coming straight from Trulieve, and my order is being personally overseen. That made me very confident in my decision making, and another gold star mark for Trulieve.

The order included a two month supply of CBD capsules and a vaporizer and 600mg of Indica blend. The capsules administer low levels of THC (the chemical that causes the euphoria feeling), but increased levels of CBD (the nerve ending block compound that treats chronic pain). The Indica 600mg cartridge costs around $74, but there are cheaper options in the 300mg or lower range as well. The capsules range from $37 of low level THC in 10mg form, but also range upwards of $116, depending on the potency of THC needed. I take capsules in the morning, and 2-3 inhales of the vape cartridge at night before bed.

The combination of the both of these daily has vastly improved my overall function and mobility. The effects I feel are minimal, but pain is reduced at least 80%. The only way I can describe the sensation is that still feel the weight of my body on my ankles and knees, but the pain is reduced to the point to where I can now easily get out of chairs, off the floor or out of vehicles. It's almost as if the legs are numb to a tolerable level, and when I walk, it feels like small weights are on my feet. Again, my walking isn't impaired, rather improved! I am sure each patient will have varying results, and some may need more, where others less.

I did notice after a month, I was needing 2 capsules a day of the 10mg dose, up to 20mg daily. Having consulted my doctor, he decided to increased my capsules to 50mg, as well as allowing more THC mixed with the CBD for a more potent treatment. Each person's body chemistry is different, and it's because of this, some will find they may require gradual increases until the ideal treatment plan is achieved.

So far, I've had great service using Trulieve, and their support team is very helpful. I will probably stay with Trulieve until otherwise noted. In the coming months, entering the New Year, I will monitor my progress as a long term medical cannabis user, and see if potency levels remain and be sure to keep those following my progress updated. I highly recommend those, like myself, who suffer from debilitating joint damage stemming from hemophilia related injuries, to pursue medical cannabis treatment ASAP. The benefits really are astonishing, and I'm a firm believer in natural treatments over pharmaceutical pain management.