Arthritis Insight-Member Stories-Irene's Enbrel Journal

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Irene's Enbrel Journal

July 15, 2001

I have now completed over 3 months of Enbrel. Unfortunately, this drug has not been successful in helping my RA.

A few weeks ago, after 10 weeks of Enbrel, I started to have a flare in my symptoms, starting the day after each injection. I would wake up with strong pain in my shoulder and hip. My RD suggested that I withhold the Enbrel for a week. I did this and I started to feel a bit better. When I restarted the Enbrel, I again started to have the flaring. I saw the RD 2 days ago, and we decided to stop the Enbrel. I have looked at the information sheet supplied with the Enbrel. Apparently, developing additional symptoms while receiving Enbrel is rare ( defined as less than 1 case out of 100 patients treated).

I had been waiting to try Enbrel for over a year, so it is disappointing that this drug did not help. After some discussion with the RD, I will next be trying Arava. The RD is away next month, so he wants me to wait until Fall before I add Arava to MTX, Plaquinal.

I guess I won't be making it as a poster girl for Enbrel !!!

May 28, 2001

I have now completed six weeks of Enbrel therapy. Some of the injections cause pain at the injection site for a few hours, then at other times there is minimal reaction. So far, I am not having any improvement with the RA. There is no change with the amount of inflammation, stiffness and pain. I am disappointed about this as I was really expecting some good improvement. Has anyone had experience with Enbrel giving improvement after a long period of time? The few people I have talked to about this all seem to have noticed improvement within 2 to 6 wks after starting Enbrel. I would appreciate any feedback from members as to when ( what time frame) the Enbrel started to be effective.

May 5, 2001

I have now had 5 Enbrel injections ( 2 injections per week). While the first injection had caused throbbing pain at the injection site for 24+ hours, the subsequent injections have only had about a 2 hr reaction at the injection site.

So far, there is no change or inprovement with the RA. My hands, feet and knees are still swollen and all the other usual joints are still sore. I haven't noticed any difference in my level of stiffness yet.

I am patiently waiting for the Enbrel to start working. I know it is still early yet. So I am watching and waiting....

April 19, 2001

I received the Enbrel prescription last week and submitted it to my pharmacist. There was very prompt shipping and I received the Enbrel in less than two days. It is sold in a box, with four injections trays. Each tray contains everything you need for the injection, including the alcohol swabs. At two injections per week, the box contains a two week supply. The cost is very high. Each box ( a two week supply) cost $ 762Cdn. This is almost $20000 Cdn per year !!! I am very appreciative of the insurance coverage.

I had my first injection on April 17, 2001. The information I had previously received from Immunex also included a video and a stand up book with detailed photos on how to prepare and administer the injection. The directions and the photos are very clear. The injection went well, once I got up my nerve to actually inject myself. A few minutes after the injection, I started getting a throbbing sensation at the injection site in my thigh. I had the throbbing pain throughout the next day. Today, there is no pain or swelling at the injection site. Apparently, about 37% of people taking Enbrel have an injection site reaction.

Immunex requested that patients call in to inform them of the start date. They will do periodic follow up calls ( if you consent) to see how the treatment is working. There is also a 24 hour information line staffed by registered nurses to answer questions.

I am looking forward to the next few weeks to see what will happen with the Enbrel treatment.I have received some encouraging emails from Arthritis Insight members. It is great to have this support.

April 5, 2001

I was diagnosed with RA 2 years ago. I have many joints affected, especially my hands, feet and knees.Plus, I am so fatigued. I have been treated with a variety of DMARDS and nothing has helped to reduce the inflammation, pain etc. I have tried Doxycyline; MTX, Sulfasalazine, and Plaquenil; then MTX, Plaquenil and gold injections. After three months, the gold injections made me sick and I developed gastritis and infections. Early in January 2001, my rheumatologist referred me for Enbrel.I am currently on MTX, Plaquenil, and Celebrex for RA.

I live in Winnipeg, Manitoba, Canada. Enbrel was just recently approved in
Canada, late in 2000. I have been waiting to hear about my approval for Enbrel. I called the Canadian information line several times and was told that Enbrel is approved based on date of application. I was also told that the staff manning the information line did not know in what order the Enbrel applications were received. I was also told that my insurance company was waiting for additional information from my rheumatologist. Last week, I received a phone call from the Enbrel information line, informing me that the insurance company did not require additional medical information after all and that I was now being assigned a DCN number. This number must be written on the prescription in order to have the prescription filled. The DCN number also ensures that you are guaranteed an ongoing supply of Enbrel.

This week, I received a Patient Resource Kit from Enbrel. The kit contains a standup book, showing detailed photos on how to prepare the Enbrel and how to inject it. There is also a small mixing station which is like a stand to hold the syringe to assist in preparing the medication. There is also a placemat to help organize the supplies for injection preparation. The next step is to see my rheumatologist this month to obtain the actual prescription.

I have read many positive things about Enbrel. I am really hoping that this drug will be the one that will help to control my RA.