Leanne's Enbrel Experience

Over the past year and a half to two years, I have been battling the flare from hell. Coincidently, this flare began around the time of Arthritis week in 2002. At that time, I was taking 25mg Methotrexate (mtx) weekly, Arava and Naprosyn (1000mg SR daily).

From mid April 2002 until November 2003 we endured a constant period of trial and error in an effort to find a medication regime that would give me back some level of control. Throughout it all, the basic structure of my treatment was to be a combination of Methotrexate plus one other DMARD and one NSAID. Prednisone was also to be used as the first method of attack and then to give me a buffer until the correct regime was found. Unfortunately, my normal prednisone pattern didn’t help and it soon became apparent that the level I needed just to barely function was between 20mg and 30mg a day.

Once the prednisone failed to arrest the flare, we tried switching from oral to injectable methotrexate. After 8 weeks of no change, we switched back (as my preference was for oral delivery methods wherever possible). We then stopped the Arava and introduced Remicade. After 5 infusions, Remicade was stoped and Cyclosporin started. Next was a change from Naprosyn to Vioxx. None of these combinations gave anything more than about 4 to 6 weeks improvement.

This trial and error period with my medications coincided with the push to have Enbrel added to the PBS. Enbrel is one of the newer DMARDs often referred to as a “Biologic”. Unlike the older DMARDs, Enbrel had been specifically developed as a treatment for Rheumatoid Arthritis. It is a type of drug known as a TNF-a Inhibitor and basically, its aim is to stop or significantly reduce the bodies’ natural inflammatory response.

Approval was eventually granted to have Enbrel added to the PBS from August 2003. However, strict criteria were applied to it and only patents that met all the criteria were able to access Enbrel through the PBS. In the lead up to August, it appeared that Enbrel would not be an option as even though I met all the physical and treatment history criteria, patients had to be RF positive and I had always been RF negative. However, just prior to it’s listing, the RF positive criterion was removed for adult patients diagnosed prior to the age of 18.

After 6 months treatment with Cyclosporin at increasing dosages, the decision was made in November 2003 to stop Cyclosporin and apply for Enbrel. The first step in this process was to have blood tests done to prove that my ESR and / or C-RP were above the required benchmark (the ESR was). I then had to sign a declaration form acknowledging that if I was granted access to Enbrel, it would only be for 16 weeks and a decision on continuing treatment would be based on HIC criteria and not on how well I or my rheumatologist thought I was doing. My rheumatologist also had to complete a joint assessment and document my current disease activity and treatment history. The completed forms then had to be sent to Hobart for assessment. A decision was expected in around 7 days. However, due to a clerical error on the forms, my application took a little over 2 weeks to be assessed. Thankfully though it was approved and I received my script (and repeats) for 16 weeks supply of Enbrel at the beginning of December. Allowing 2 days for the chemist to order in the Enbrel, I was finally able to start it on the 5th December 2003.

Enbrel can only be administered via a sub-cutaneous injection and as the injectable solution has a very short shelf life, it is supplied as a powder. As most patients using Enbrel will do the injections themselves (or have a carer do them), getting the Enbrel is only the first hurdle. You then have to learn how to prepare the Enbrel solution and do the actual injection. Everyone is different but in general, this means that your first two injections will be done with your doctor.

The Enbrel comes in a pack containing everything you need for each dose. This includes a vial of Enbrel powder, a syringe containing 1ml of sterile water, 2 alcohol swabs and two 27 gauge needles (one for mixing the solution and one for the actual injection). However, I am a big chicken when it comes to needles so I get a supply of 30 gauge needles from my GP. These are the smallest needle available and are what most insulin dependant diabetics’ use.

The process for preparing the Enbrel is as follows:
Take the top of the vial and clean the rubber stopper with an alcohol swab. Break the seal on the container for one of the needles and remove it. Remove the cap from the end of the syringe. Place the needle on the syringe and remove the cover. Insert the needle into the vial and slowly depress the plunger until all the water is injected into the vial. While the needle is still in the vial, slowly move the vial about to mix the Enbrel with the liquid. Do not shake, as this will cause bubbles. Once the solution is ready (this takes a few minutes), it will be clear and have no lumps. A few bubbles may appear but this is okay. Turn the vial upside down and move the needle so that the tip is above the liquid. Press in the plunger to ensure there is no air in the syringe and holding the plunger in, bring the needle down slowly so that just the tip of the needle remains in the vial but below the surface of the solution. Pull back on the plunger slowly until all the liquid is drawn from the vial into the syringe. Remove the needle from the vial. Place the needle cover back on the needle and remove it from the syringe. Discard both the vial and the needle in a sharps container. The next step is to insert the needle that will be used for the injection onto the syringe. This is done in the same manner as for the needle used to mix the solution but don’t remove the cover from the needle until you are ready to do the injection.

The next step is to select an injection site. Enbrel can be given in the thighs or tummy and I have been told by other Enbrel users that it is less painful in the tummy. You need to change the site each time so I will just work my way around my belly button. And lets face it, the prednisone induced weight gain means I have plenty of tummy to inject into so I am in no danger of running out of new injection sites. Once you have selected the site, clean the area with the second alcohol site. Remove the cover from the needle and hold the syringe so that it feels comfortable, you are able to easily depress the plunger and the longest side of the needle (the tip is bevelled) is pointing down. Using your other hand, either pinch the skin or stretch it out where you cleaned (my GP recommended the stretch method). Holding the needle at a 45° angle to the skin, insert it in a single smooth action. Because the needle is so short, you can safely insert its entire length. Depress the plunger slowly until all the solution is injected and then remove the needle, ensuring you keep it at the same angle. Use a cotton ball to apply pressure to the site if there is any bleeding. Place the cover back on the needle and dispose of it in your sharp’s container.

Enbrel is administered twice a week and needs to be given at least 72 hours apart so I have decided to do mine on Tuesday’s and Friday’s. I had my first injection on Friday, 5th December and I did my first self-administered injection on the following Tuesday. It wasn’t as bad as I expected but I was shaking a lot and did make a small scratch on my skin when I withdrew the needle. But you do improve with practice and while I will never enjoy doing it, it is no longer a major issue. Some do sting more than others. I asked my GP about it and he said it was due to you hitting or touching a nerve but there is now way to predict when this will happen or prevent it.

Some people get almost instant and dramatic improvements but it can take up to 3 months for the full benefit to kick in. For me, I didn't notice any dramatic improvements but after the first week, I found that the fatigue and morning stiffness had both decreased. Where I previously had to go to bed by 9 - 9:30pm, I could now last until 10:30 or 11pm. And if I did wake up during the night, I found it a lot easier to get back to sleep. Over a period of about a month, I continued to notice improvements. My energy levels increased, I had less pain, my joints had better range of movement and the swelling was going down.

One of the biggest goals we had when starting Enbrel was to reduce the amount of Prednisone and pain medication I was taking. I was able to make my first prednisone reduction on Christmas day and I further reduced it (to 10mg daily) on Australia Day. I also reduced my pain medication by a third in early March.

My first check-up with my rheumatologist occurred about 5 weeks after my first Enbrel injection. I was excited because I was sure I had improved but I was also nervous in case the physical assessment didn’t concur. I was pretty sure that the inflammation had reduced in the previous week and my response to the usual first question of "how are you doing?" was "I have knees!". This brought a smile to his face. We then discussed how I was coping with the injections and what changes I had noticed. He was certainly pleased that I had been able to reduce my prednisone. My blood tests had also improved with reductions in my ESR, CRP and White Cell Count. And the best news was that the physical assessment showed improved range of motion (especially in my hips and shoulders) and a significant reduction in the amount of inflammation. In fact, he could only detect a small amount in my right knee and left ankle.

I continued to improve over the next two months and easily passed the criteria to remain on Enbrel beyond the initial 16 week period. By that time, I was feeling more like my old self and I was beginning to do all those little things that most people take for granted or whinge about (like walking to the bus without assistance, doing housework, going shopping without constantly resting and doing basic gardening). However, after almost 2 years of very little activity, I had a lot of muscular pain and stiffness. And even now, this remains one of the biggest problems.

While Enbrel has certainly made improvements to my RA symptoms and quality of life, it has not been a miracle cure. And whether it is starting to lose effectiveness or it is due to the reduction in prednisone or an increase in physical activity or a combination of all three, I have noticed some deterioration in the past 2 – 3 months. This has mainly been in the areas of fatigue, morning stiffness and increased symptoms with any physical activity. I do notice that joints are starting to swell during the day again but this usually goes down over night.

I saw my rheumatologist again at the end of May. He said that there was some increased inflammation and some joints had gone backwards in terms of tenderness and range of motion but I was still doing better than before Enbrel so there is no reason to stop it. However, he is considering adding a third DMARD into the mix. He also said some people get periods of increased symptoms and then improve again so he hopes that is what will happen with me. As I am already on the maximum dosage of the Enbrel, Methotrexate and Vioxx and still on a fairly high dosage of Prednisone, he doesn’t want to make any changes for now. He will talk to colleagues and do research to try and find what would be the best DMARD to add to my regime if I continue to get worse but for now we will just wait and see.

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The information provided on this site should not replace the advice and guidance of your own health-care providers. All material is provided for educational and informational purposes only and is the opinion of the authors. Please check with your doctor before making any changes to your treatment.

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