Let me introduce you to the world of medication faff (UK slang for hassle) in England. 

Recently, following a visit to my new MDS—a geriatrician by trade who sees some with Young Onset dudes (not many, as there are only around 15k of us here)—he decided to move me from Sinemet to Stalevo to try and reduce my off time. For those not in the know, Stalevo contains entacapone, a COMT inhibitor that is intended to stretch the effectiveness of the L-dopa out.

So far, so good. I was excited to try it. 

The first glimpse of trouble was the lack of availability. 

I'm on a relatively high dose med of 200/50/200. I was previously on 200/50mg Sinemet, but it was felt that with the addition of entacapone, we could reduce the Sinemet slightly.

The hospital pharmacist did a great deal of head-scratching and then sent me away, muttering that he could "rustle something up in a few days." Sure enough, the call came, and I trundled off to the hospital to get my meds. It wasn't Stalevo but Stanek, which is a generic brand. Okay, that's okay as long as we stick to that. However, when it came to putting my next order in (we get 28 days at a time), I was given something called Sastravi.  Yet another generic brand. Not only that, it took over ten days to get the meds due to the shortage of medication in the UK. Then I went back to Stanek, and now it looks like I may be bounced over to the preferred brand of Stalevo.

Therein lies the problem. Whilst it's said that the meds are all the same, those of us with YOPD know that the brands are blended differently and can cause trouble with absorption or efficacy.   Every brand change has brought with it less on time (which defeats the aim of the change) or has slightly different rates of impact and even side effects. 

Some of this is undoubtedly due to the UK's exit from the EU, and I'm sure this will smooth out in time. Some of this, however, is simply the profit margin made by the pharmacy on different brands. Stalevo is too pricey, so they go for the meds that make the most cash, not the ones that will help us the most.

Interestingly, when I read my notes from the consultation, my MDS noted that any generic brand of Stalevo would do. It won't. This highlighted to me the lack of awareness around these details, even amongst the trained and seasoned professionals out there. 

In summary, this is an issue that we need to raise awareness of amongst the YOPD community (especially the newly dx) and clinicians. 

As for the impact of the COMT inhibitor, I have to say that overall, so far, it's been a good move. However, I've learned once again that in the wild ride of YOPD, you need to be your biggest advocate. 

We know our bodies better than anyone - so let's keep beating the drum for what we need, using the knowledge we gain, and raise awareness wherever we can. 

Onwards!

Carl Beech (Beechy to his friends but not his Mum). Is married with two adult daughters, a dog, a cat, and a tortoise. He is a volunteer CEO  of Spotlight YOPD, a UK nonprofit. Additionally he is CEO of a Community Transformation Charity Center for his day job.