Despite taking the strictest measures—gloves, alcohol wipes, etc.—I have experienced skin infections twice now, and it hurts. I am starting a course of antibiotics and hope it will clear up like the first one, although a lump of hard material remains beneath the skin from weeks ago.
A couple of days ago, I had another incident on the east side of my stomach (the infection is in the southwest). As I removed the cannula, I had obviously inserted it into a blood vessel because blood started gushing out faster than I could stop it with an alcohol wipe. It was over in minutes and dried up well, but I had to wake my wife for emergency help. This extreme measure came in very handy, and we quickly recovered.
Many Vyalev and Produadopa users are concerned about the skin impacts of the pump, and it is totally understandable. The concerns of the group include pain, skin redness, infection, and swelling. Interestingly, the stated literature on Drugs.com points to the following statistics: infusion site reactions such as pain (26%), skin redness (27%), infection (19%), and swelling (12%). I can attest to all these right here/right now. It doesn’t come free of charge. For me, the benefits still massively outweigh the costs, but I am asking medical teams for more guidance on dermatological methods to care for the area and information on other potential cannula sites. Others have switched to hips, arms, and other places.
This drug is incredible, but living with two infections in three months and unusable spots on the stomach does not bode well for the future. I hope that science and technology can address these challenges, as they have with many others.
It is early days with these Produadopa/Vyalev issues. I hope and believe they will be sorted out, and the game changer will continue. I will keep pushing for support and answers and hope for positive outcomes.
5 Responses
Hey Ben. I “liked” this blog but I don’t really like it at all!! Keep battling away with the pump – you are a trail blazer for the rest of us. Let’s hope the clever medical people can solve the cannula/infection issues.
I really appreciate your taking time and effort to report all your experience Ben. I hope things can be resolved for you regarding the infections
Thank you
Thank you for sharing your story. I had grand ideas of doing the same but am tremor dominant and find writing/speaking tools difficult and more so time consuming just editing!
About your infection. Isn’t it possible to have an “indwelling” catheter that remains in place? Like pre-operative surgery. They place one in your hand for use during surgery.
I am trying to catch up with reading your blogs and wondering what symptoms you are experiencing that require the pump? And are you classified as being disabled?
It needs to be replaced every two days because of the risk of infection. That is the protocol.
I was freezing, shuffling had balance issues and was falling fairly regularly