Bringing Out the Big Guns (or Shots Anyways)



As I mentioned in a previous update, a couple month ago my joints started flaring badly. This is definitively on of the worse flares I have ever been in if not the worst. After a burst of prednisone did not stop it (well it helped till I weaned off of it) I went to see my rheumatologist.

At the appointment after describing my symptoms she mention Enbrel but wanted to do a physical exam first. If there was obvious signs of inflammation on the exam she would prescribe the medication but if not she was going to send me for an MRI to look for inflammation first. Well by the end of the exam there was no question my joints were not in good shape, Enbrel was prescribed.

We wrapped up the appointment by adding back in some lower dose Prednisone as well. Then the nurse came in to teach me how to do the Enbrel injections, super fun. Overall doing the injections is actually relatively simple.
Compared to an Infusion the Enbrel Supplies are Pretty Simple 

Now to get down to the nitty gritty of what exactly Enbrel is. The drug is part of a relatively new class of medications call Biologics. Enbrel was actually the first FDA approved Biologic. Biologics are used in the treatment of quite a few autoimmune disease and there are a few types. Enbrel in an TNF inhibitor. That means it suppresses TNF proteins, which are part of the immune system. In someone with autoimmune arthritis there is too much TNF from their over active immune system. Taking some of it away help bring down inflammation. However that also means Enbrel suppresses the immune system making it harder to fight off infections.
Enbrel and TNF in knee joint
Taken from the Enbrel Website
As far as side effects the most concerning is the suppressed immune system. I spend a lot of time with kids both in schools and as a nanny so I always have to be super careful and I go through lots of hand sanitizer. I also got headaches after my first couple injections but they seem be be getting better the longer I am on Enbrel. This week I had a site reaction for the first time but it did not show up till two days latter. This week I am going to try taking Benadryl prior to the injection to hopefully prevent any reactions.

The Freedom of my Port

At the end of August I had a Bard Power Port implanted in my chest. After 8 months of weekly schedule infusions and about a year of have almost weekly IVs scheduled or not my veins were becoming less and less usable. I was exhausted too. I was exhausted from my weekly trips to the infusion center, in addition to my normal medical appointments. I was exhausted from still crashing only a few days later from POTS. And I was exhausted from the ER trips that happened when I crashed particularly hard. My cardio did not want me to have a central line but when I came to my appointment mid-August the PA saw my arms that were so beaten up from the failed IV attempts and blown veins coupled with exhaustion from my most recent ER trip and a port was ordered.

The port surgery was at the Hospital of the University of Pennsylvania (HUP), since that is where my cardio is. Unlike CHOP they were not as familiar with POTS patients (ironic since that is where I am treated for POTS), so they did not give me nearly enough fluids but besides for that it wasn't a hard surgery. Someone had told me it took them 3 weeks to get back to normal activities which freaked me our since I had plan to go to classes 3 days later since I was having surgery the first Friday of the semester. I knew that I would probably be fine and the doctor placing the port said to me after reading through me medical record this was no big deal compared to a lot of things I had been through. And he was right, not only was I fine to go to classes but I even went to a staff event for my job a couple days later.
When your surgical glue matches your shirt you know your outfit is on fleek

The port has been amazing. I am now getting fluids 3x a week. Every Monday a nurse comes and access the port, then I run the fluids myself and on Fridays I take the needle out. I can also do extra infusions as needed, which has saved me quite a few ER trips. I even can do them on the go. I have done infusions while in class and took all my supplied on trips with me. I really feel like I have gained a lot of freedom and control of my life with my port.