My Experience with Cyclosporin

My name is Leanne and I have had RA for 20 years. In early April 2002, I went into a major flare. After 12 months of trying various medication changes without success, I started on Cyclosporin.

Cyclosporin is one of the medications in the group of drugs known as DMARDs. It was originally developed as an anti-rejection medication for use in kidney transplants and is often only used in the treatment of Arthritis if a patient has failed all other available DMARDs. The reason for this is that Cyclosporin can cause major kidney and liver problems as well as high blood pressure. Cyclosporin is only available through Hospital Pharmacies and you need to provide an authority document signed by your rheumatologist when you submit your first script. The starting dose is 3mg per kg of normal body weight (ie: what you would normally weigh without the excess weight due to medications such as prednisone). This can be be increased up to 5mg per kg.

I started on Cyclosporin on the 31st March 2003 at a dosage of 200mg per day. This means I will be taking a 100mg tablet both morning and night (with 12 hours between the doses). The tablets are very large (the 100mg tablets are about 2cm long) and have a rather unpleasant smell. They have to be swallowed whole but go down fairly easily most of the time due to the almost capsule like outer coating.

Due to an unrelated incident, I was actually off work for the first week I was on the Cyclosporin. In hindsight, this was a good thing as the biggest single impact I had from the Cyclosporin during that week was that it made me extreamly tired. There were many instances where I was laying on the lounge watching TV or reading a book and suddenly it was 3 or 4 hours later.

I was already on medication for high blood pressure prior to starting on Cyclosporin so the possible BP side effect was a major concern. There was no major change during the first 2 weeks but I did notice a slight increase after that. I went back onto the maximum dose of the BP medication. This was enough to stabilise my BP around 130/90.

I began to notice real improvements after about 4 weeks. The fatigue and morning stiffness improved as did the pain and stiffness in the joints only slightly affected. I still have pain and swelling in the joints that have been most affected through this flare but my mobility and range of motion is better and the amount of swelling has reduced. The improvements have been enough that I have reduced my prednisone from 30mg to 20mg per day.

I wish I could say that Cyclosporin was my miracle drug and that I continued to improve on it. However, this was not the case. The improvements lasted about 4 weeks. I was able to reduce the prednisone down to 17.5mg but I also had to increase the amount of pain medication I was taking.

Over the next 3 - 4 weeks, I noticed that the morning stiffness had increased to around an hour and the pain and swelling had increased (especially in my ankles, knees, hips and shoulders). I saw my rheumatologist at the 12 week mark and he confirmed the increase in my symptoms. Due to the amount of pain and inflammation in my left ankle and right knee, he injected these joints with cortisone. He also advised me to increase the Cyclosporin to 225mg per day (125mg in the morning and 100mg at night). I was to give this dosage 3 months to kick in.

I went back to my rheumatologist in September. This marked 3 months since the dosage increase. Unfortunately, I have had no improvement. In fact, I have continued to get worse. I was expecting that Cyclosporin would now be stopped, especially as the Enbrel criteria for patients like myself who were diagnosed as children has now been changed and the major factor preventing me gaining access previously has been removed. However, my rheumatologist still has some concerns about getting me approved for Enbrel. New literature has also advised that the dosage of Cyclosporin should continue to be increased when an inadequate response is seen up to the point where the patient is on the maximum tollerable dose. If there is still an inadequate response at this dosage, then Cyclosporin should be stopped. This means that I again need to increase the dosage. My maximum possible dose is 350mg per day but this would be a rather large increase so my rheumatologist has prescribed a dose of 300mg per day. I am to take this for approximately 8 weeks.

My next rheumatologist visit was on the 14th November. I have continued to get worse over the last 8 weeks and am again struggling to cope with the normal day to day activities. I have significant pain and limited movement in both shoulders and the left hip. I also have significant pain and swelling in both knees and the left ankle and pain in the joints of my right hand and wrist. My ESR has also gone up to 31 (which is a big thing for me as it usually doesn't go above the upper limit of normal). All these things mean that I should now have no problems getting approved for Enbrel. As such, I am stopping the Cyclosporin as of today and the completed application for Enbrel will be sent to the assessment committee in Hobart next Tuesday. If everything goes smoothly, I should be able to start on Enbrel the end of this month or the beginning of December.

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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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