Today I had training on how to self inject Rebif, in the hope of delaying a further MS relapse. My daughter came with me to hold my hand and support me by taking in all this new information too, however, I needn’t have worried. I have been given a magic gadget that does most of the work and as the needle is very fine, I barely felt a thing!
Rebif is also known as Interferon beta 1a and is a real money spinner for its manufacturer, Merck. I have been told that this drug costs the NHS £11,000 per year for each patient – I can’t find any confirmation of this online but have found mention of 5,000 USD per month. I imagine the NHS must have some sort of supply deal with Merck.
It’s all a bit mind boggling! This drug is not going to make me feel better, it won’t cure my MS or stop it progressing but it might reduce relapse rate by up to 30% …or it might not. Even when/if I have another relapse, it will be impossible to know the impact Rebif has had on this.
The potential side effects are also mind blowing! Injection site reactions, flu-like symptoms and depression are common and there are other less common ones too. I will need blood tests every 3 months to check my liver and kidneys aren’t being damaged by the drug. Writing this, I am wondering why I am even taking it!
Rebif is one of the kindest MS drugs – there are others that are more effective but the side effects are scary – permanent damage to the immune system, increased cancer risk, severe depression and suicidal thoughts – I don’t ever want to try these ones!
I have my fingers crossed that we can raise the money needed for HSCT so that I don’t have to think about these drug options again and my body has a proper chance to recover from the MS monster.