My experience with Enbrel....

It is that time again, another installment. If you have missed my previous posts, I have gone into detail about my experience with topical ointments, tonsilectomy, methotrexate and phototheraphy. Today I talk about my most negative experience to date, which happened at the start of 2015...

In my other post regarding Methotrexate, I ended up feeling very ill while taking a higher dosage in December 2014, while also developing psoriatic arthritis in my elbow earlier that year also. At this time, I also found my skin to be bumpy around the back of my thighs leading me to think maybe my Psoriasis was becoming active again but it wasn't happening at a rapid rate, thankfully. I was always given the options of changing to biologics, but was put off at the thought of having to inject myself. To reference Psoriasis.org, Biologics :- "target specific parts of the immune system. The biologics used to treat psoriatic disease block the action of a specific type of immune cell called a T cell, or block proteins in the immune system, such as tumor necrosis factor-alpha (TNF-alpha), interleukin 17-A, or interleukins 12 and 23. These cells and proteins all play a major role in developing psoriasis and psoriatic arthritis."

Enbrel (etanercept) was prescribed to me in January 2015. With Enbrel, you have a nurse assigned to you who comes to your house and helps to teach you how to inject it yourself. Thursday January 8th was going to be the start date and I was to try 50mg, which comes in pen form (myclic pen pictured above). The injection areas to choose from are either the thighs or stomach, I found the thighs to be the area of choice, alternating between left and right each week. To use the pen, the cap is taken off, and the pen is place on the top of the thigh, pushing down so the guard is pushed back and once you're ready the button is pushed releasing the needle. The first time I did it, I did it wrong as the nurse had confused me saying to count to 10, but I was supposed to wait for the second click (which they say is 10 seconds, sounding that it is been dispensed). Due to my mistake, I didn't get a full dose, but I'd know better for next time, being a weeks time. 

Thursday January 15th, My nurse was unable to attend my home. I remember it the weather had been quite bad around that time, including snowfall in higher areas. I managed to inject myself, after about a half hour of building myself up, it was a case of "F**k it! *click*". I did find the pen to be painful. The nurse had asked if I would prefer to use a syringe which I felt sick at the thought of, but she made a good point that with the syringe you have more control. Once you click the button on the pen, its a case of grin and bare it. That same evening I found the back of my thighs and my scalp to be very itchy. As I've said above, it did have a few bumps on the back of my thighs, which felt more like pimples than anything else and didn't really bother me until then. 

Monday Jan. 19th, and I woke up feeling horrible, I had symptoms of a sore throat, runny nose, feeling cold and headaches at night. These symptoms persisted as the week went on and due to my next injection due on Thursday it was decided I would give it a miss. It should be noted that if you do feel sick while on a biologic and are due to take it around that time, it is best to not take it, as you could become more ill. My throat had worsened by Thursday and I felt congested in my nose.

I was sure to keep track of my symptoms and injections in my Enbrel diary. I also kept track of my psoriasis, which by Saturday 24th had worsened. It was now showing on my scalp, legs, back, stomach and my face. I was also still very congested at this stage. The following week I had noticed red patches on my thighs where I had injected. I contacted my nurse who had said to keep an eye on them. They were slightly red and a small bit raised but I was told nothing to worry about. It was now Thursday the 29th and as I was still sick, I was missing another injection, making it two weeks in a row without Enbrel. 

Monday Feb. 2nd which was a visit to my Rheumatologist who had prescribed Enbrel, for a month review. While in the last month, my joints had felt great, my skin was going the opposite way. He thought maybe the dosage was too much to start on so halved my dose to 25mg every week and to take a low dose of Methotrexate to help make it more effective.

I started my new routine of 25mg of Enbrel the following Monday, the 9th. The nurse had made the visit to help show me how to inject with a pre-filled syringe which is how 25mg comes. She got to see how back my skin had become and had supported my decision to go back to my dermatologist about my worsening skin and the possibility of starting phototherapy again. I took 10mg of MTX the same day, which was followed by 10mg of folic acid two days later.

I did find it strange injected with a syringe, but I managed to do so the second week with no supervision. I managed to get an appointment with my Dermatologist Feb. 17th and he looked over my skin and agreed with my thoughts on light treatment and I signed the appropriate forms and was book in for Feb. 23rd. I had 3 doses of 25mg of Enbrel in total before I was back to my rheumatologist for another review, and it was decided Enbrel was not beneficial to me and so it was stopped.

I was very unfortunate that Enbrel did more harm than good for me as I have heard and seen stories of how it has helped others with psoriasis and/or psoriatic arthritis. My Psoriasis had gotten so bad over my entire body, especially on my face which at times I felt I had to cover with makeup to avoid stares which were quite hurtful. I went on to continue phototherapy until May 8th 2015. I found it to be an expensive year as phototherapy 3 times a week at €30 a time which may not have been necessary had I not been prescribed Enbrel. Add in he cost of doctors visits on top of that and the fact I wasn't working. It probably seems like i'm cursing Enbrel and in a way, it was a negative experience but it did prepare me in other ways, such as injecting as I believe the nurse service is not available with some biologics.

As I always say, what happens to one might not happen to another and I know people whose lives have been made better by Enbrel. Its just a case of finding what works individually.

Did you have a similar experience? or what do you find works for you? let me know below.

Until next time....

Sarah x