Making the Decision to Start a DMD
In February 2015, out of nowhere, I began to fall. Not a delicate, Oscar-worthy crumpling to the floor, but an embarrassing, on-all-hands-and-knees, make-a-hole-in-your-trousers, kind of fall. By the third public fall, I had adapted so much that I laughed it off to the bewilderment of strangers around me, dusted myself off and carried on with my day.
I had my annual MRI scan in June and everyone around me told me the falls were just due to an infection. I knew, however, that my balance had been 'off' for some time so it was possibly related and, after further investigation, a tiny part of my MRI showed that my cerebellum was affected, disturbing my balance. It took a few weeks to get this confirmation, but the outcome was a recommendation to start on a Disease Modifying Drug, or DMD for short.
I was diagnosed in 2008, but had had my first relapse in 2005. However, I can track my MS back to my early twenties. If we go from 2005, say, this meant that by this period of falls I had not been on a DMD for ten years. These days, people freak out when you say that!
My MS care team have always been especially careful in their recommendations to me, mostly because I have had very few relapses and things hadn't really started to move until 2015. Until then, the advice was very much "Let's wait, you're doing really well." In fact, until 2014, I was under general neuropathy and not an MS Consultant so this all came into play.
I was always very reticent about DMDs. I have never been one for taking medication, even an ibuprofen for a headache, which irony is not lost on me with my currently careful med regimen. The thought of taking something I felt I didn't need and which caused side effects, meant that DMDs were not even on my radar for many years. Then, I then came across the 'Time Matters in Multiple Sclerosis' report , which recommends early detection and early intervention. Of course, with a nagging feeling that I might be somehow behind in my treatment, I started to think about DMDs in a new light. Yet I still had concerns - I was still going strong, wasn't I? what if something was happening and I couldn't see it? was I fighting to have a drug I didn't need?
I flagged the report to my neuro and with the MRI evidence, I took a step closer to taking a new medication. In August, I had a spectacular fall whilst out with my family, visiting a zoo (bloody meerkats!). The difference with this fall was that it was the first time my husband and child had seen it happen. My son was quite brave, as he usually is, but my husband was shocked. My knees and the palms of my hands were torn up and just like a slap in the face, I looked up to find a bathroom, and saw that I'd fallen under a sign for the zoo's restaurant - Café Graze (yes, feel free to laugh!).
For some, being offered a DMD is a no-brainer (no pun intended). For someone like me, it took time to sink in. The falls accelerated my decision to start.
The next decision was which DMD to go for. This is our choice, however it's usually under the guidance of either the neuro or the MS nurse. There is a brilliant website called MS Decisions. The decision aid goes into the pros and cons, where you can choose a DMD that suits your lifestyle.
I don't mind needles but I don't like fuss, so I decided to go for Tecfidera, a relatively new drug in the MS armoury, which is taken twice a day. I have to go for blood tests every three months so that I'm monitored for nasties like PML, and after the initial couple of months of making friends with my loo, Tec and I learned to live together, so I now have the odd cramp or flushing. Whether or not it's working will be determined by a future MRI.
I often see people confused about DMDs on online forums, so I suspect that not enough is done to inform people either on their choices, coach them around their decision, or throughout the time you take your medication. I have found that some fellow MSers are quite militant about the need to be on a DMD, and you don't often hear the timid, reluctant voice which needs less of the panicked approach but more of the reasoned 'let's talk about why you feel that way' approach.
The recent decision by NICEI(not so nice?) to rescind support for several of our DMDs, based on cost not effectiveness, did not go unnoticed by most of the MS community of MSers and medical professionals. The jury's still out on what will happen but I suspect some, if not all, the choices will decrease.
As MSers, I think we need to hear each other out, and it would be great to hear of more care teams supporting individuals in all of their choices. Whatever your decision, you take some kind of risk. You just have to take the right one for you.
If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme
I had my annual MRI scan in June and everyone around me told me the falls were just due to an infection. I knew, however, that my balance had been 'off' for some time so it was possibly related and, after further investigation, a tiny part of my MRI showed that my cerebellum was affected, disturbing my balance. It took a few weeks to get this confirmation, but the outcome was a recommendation to start on a Disease Modifying Drug, or DMD for short.
I was diagnosed in 2008, but had had my first relapse in 2005. However, I can track my MS back to my early twenties. If we go from 2005, say, this meant that by this period of falls I had not been on a DMD for ten years. These days, people freak out when you say that!
My MS care team have always been especially careful in their recommendations to me, mostly because I have had very few relapses and things hadn't really started to move until 2015. Until then, the advice was very much "Let's wait, you're doing really well." In fact, until 2014, I was under general neuropathy and not an MS Consultant so this all came into play.
I was always very reticent about DMDs. I have never been one for taking medication, even an ibuprofen for a headache, which irony is not lost on me with my currently careful med regimen. The thought of taking something I felt I didn't need and which caused side effects, meant that DMDs were not even on my radar for many years. Then, I then came across the 'Time Matters in Multiple Sclerosis' report , which recommends early detection and early intervention. Of course, with a nagging feeling that I might be somehow behind in my treatment, I started to think about DMDs in a new light. Yet I still had concerns - I was still going strong, wasn't I? what if something was happening and I couldn't see it? was I fighting to have a drug I didn't need?
I flagged the report to my neuro and with the MRI evidence, I took a step closer to taking a new medication. In August, I had a spectacular fall whilst out with my family, visiting a zoo (bloody meerkats!). The difference with this fall was that it was the first time my husband and child had seen it happen. My son was quite brave, as he usually is, but my husband was shocked. My knees and the palms of my hands were torn up and just like a slap in the face, I looked up to find a bathroom, and saw that I'd fallen under a sign for the zoo's restaurant - Café Graze (yes, feel free to laugh!).
For some, being offered a DMD is a no-brainer (no pun intended). For someone like me, it took time to sink in. The falls accelerated my decision to start.
The next decision was which DMD to go for. This is our choice, however it's usually under the guidance of either the neuro or the MS nurse. There is a brilliant website called MS Decisions. The decision aid goes into the pros and cons, where you can choose a DMD that suits your lifestyle.
I don't mind needles but I don't like fuss, so I decided to go for Tecfidera, a relatively new drug in the MS armoury, which is taken twice a day. I have to go for blood tests every three months so that I'm monitored for nasties like PML, and after the initial couple of months of making friends with my loo, Tec and I learned to live together, so I now have the odd cramp or flushing. Whether or not it's working will be determined by a future MRI.
I often see people confused about DMDs on online forums, so I suspect that not enough is done to inform people either on their choices, coach them around their decision, or throughout the time you take your medication. I have found that some fellow MSers are quite militant about the need to be on a DMD, and you don't often hear the timid, reluctant voice which needs less of the panicked approach but more of the reasoned 'let's talk about why you feel that way' approach.
The recent decision by NICEI(not so nice?) to rescind support for several of our DMDs, based on cost not effectiveness, did not go unnoticed by most of the MS community of MSers and medical professionals. The jury's still out on what will happen but I suspect some, if not all, the choices will decrease.
As MSers, I think we need to hear each other out, and it would be great to hear of more care teams supporting individuals in all of their choices. Whatever your decision, you take some kind of risk. You just have to take the right one for you.
If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme
