Managing MS - Part 2
In early 2017, the nurse at the hospital advised me that Teva the company that manufactures Copaxone had released a 40mg, 3 days a week injection which was approved and now available on the Pharmaceutical Benefits Scheme (PBS). Results from clinical trials had shown that the 40mg injections were just as effective as the daily Copaxone 20mg injections. As you can imagine, I was so happy about this news as it meant less site reactions and less injections however I was hesitant about changing my medication as my condition was stable.
After much consideration, I decided to change to the Copaxone 40mg, 3 times a week injections. This medication came with a different injecting device called the C-Sync. I found the C-Sync device difficult to use on my own in certain areas as I couldn’t hold the device in one hand. I found myself constantly asking my husband for assistance which was so frustrating, my husband was happy to assist however once again I felt like I had lost my independence. I had to make a choice, it was to either accept that I required assistance or try to manually inject myself which I just didn’t feel comfortable doing. At the time, I provided feedback to the nurse at the hospital who advised me that they would pass on my feedback to the Teva representative. I did consider changing back to the Copaxone 20mg daily injections however this was no longer an option as the daily injections were being removed from the PBS.
Over time I experienced issues with the C-Sync device, on many occasions the injections did not release which was very stressful. I contacted the Copaxone support team and they suggested ordering a new device every 6 to 12 months. On one occasion, I experienced so much pain after injecting that I couldn’t move, I recall crying and not knowing what to do. This was not only stressful for me but also for my husband, he actually considered taking me to the emergency department. Luckily the pain resolved after about half an hour. Now I was dealing with feeling anxious every time I had to inject in that area. I had to mentally prepare myself and on some days this meant it took an extra half an hour to an hour to inject. I then realised what had caused so much pain on that occasion! I had received my new C-Sync device however I did not change the depth of the device which meant I was injecting too deep! This was definitely a learning experience. As time progressed, I noticed that I also had to change the depth of the device depending on my body weight to ensure I was injecting at the correct depth.
It was now late 2017 and it was time for my next MRI scan, another anxious wait! My results came back and the news was unexpected. I didn’t have any symptoms and I had not had a relapse however my results showed 3 new lesions in my brain which meant my disease was active, I was devastated.
The Neurologist suggested I speak to the nurse about changing to another medication and scheduling a review MRI scan in 6 months. I recall thinking ‘this is not good’. The nurse once again provided me with all the medication options and advised me that as my MS was mild, I had time to make a choice.
It was back to the drawing board, I felt like I was starting all over again. I now understood what ‘managing my MS’ meant. It once again took me a while to research the medications and their side effects. I found each medication’s side effects to be worse than the other. There was one medication named Tecfidera which was a twice a day tablet. I was leaning towards this medication however one of the side effects was PML (brain disease). There was a small risk that I could develop brain disease if I tested positive to JC Virus and of course, I tested positive to this virus. The nurse at the hospital assured me that the risk was a small percentage and generally a risk in older people. I recall crying and feeling like I didn’t have any options. I thought ‘a small percentage is a small percentage!’. It got to the point that I just didn’t want to think about it anymore so I chose to continue taking Copaxone and kept myself occupied by throwing myself into my work, I had just been promoted which I was excited about!
As time went on, I started noticing pain in my back so I started seeing an Osteopath. Even though I was keeping myself occupied, I was feeling anxious and the stress was getting to me. It was at this point that I decided to take control of my health.
I'm participating in The May 50K with my amazing team the ‘Wellness Warriors'! Yes, we've decided to take on the challenge to walk 50km’s throughout May to raise vital funds for MS Research.
Research is the KEY to changing the future of MS.
You can show your support by sponsoring me and/or my amazing team at the following link:
https://www.themay50k.org/fundraisers/mirellapetrucci
Thank you, your support truly means so much xx