I switched my DMD
I hope this message finds you well. I wanted to share some significant news regarding my journey with multiple sclerosis (MS). In the past three months, I made a decision that many would consider unthinkable – I switched my Disease Modifying Drug (DMD) and began taking Ocrevus. This marks a substantial change in my DMD treatment plan, especially considering I had been on Copaxone for the past six years due to a negative reaction to Tysabri.
You might be wondering why I made this change. Well, it wasn't a decision taken lightly. I felt that Ocrevus has been on the market long enough for us to gather a wealth of information about its effects, both positive and negative, and to monitor long-term outcomes in other patients. Ultimately, I wanted to provide my body with the best chance of success and treat my MS with the highest level of efficacy available.
The compelling research supporting Ocrevus was a significant factor in my decision. However, what truly sealed the deal for me was a conversation with my neurologist. She was extremely positive about the drug and had seen remarkable results in patients who had been on it for three or more years. What struck me even more was when she said that if she were dealing with MS, she would personally choose Ocrevus. This was unprecedented for me, as I've never had a neurologist express such overt positivity about any drug or admit they would take it themselves. Typically, they are reserved in their assessments.
I'm thrilled to report that I had no side effects from the Ocrevus infusion. Additionally, I have coped exceptionally well with the ongoing challenges posed by the COVID-19 pandemic and have remained free of infections.
Now, three months into my Ocrevus treatment, I'm enjoying the freedom of not having to self-inject Copaxone and, importantly, I haven't experienced any deterioration in my condition. I also haven't noticed a significant improvement, but I remain hopeful.
I will keep you all updated on my journey with Ocrevus, sharing my experiences and any insights that might be helpful to the MS community.
Thank you for your continued support, and please feel free to reach out if you have any questions or would like to discuss your own experiences.
1 comment
I never started on a dmd
back in 2016 after 1 had a flare up and some new symptoms i was offered a dmd – however fortunately it never materialized – do not know if it was because my medication nurse did not get around to it, don’t really know what happened – fingolomod was the one I selected – don’t ask me why – thank goodness it never happened
I know at the time the price tag was 46000 per annum – quite a lot of money
I did a bit of research and settled on taking a low dose of naltrexone 4.5 mg / day – initially i was getting these from overseas – on reflection – quite risky – how do you really know what your getting
I would mix up a 50mg tab of naltrexone with 50ml of distilled water and syringe out 4.5 ml and take with water before bed – each tab cost me about $9 and on average that would be enough for 11 evenings – so 33 50mg tabs per year or $297 / year.
Since taking the ldn my condition has only improved and i have not had an exacerbation since 2016 – some 8 years ago. My neurologist now prescribes the naltrexone for me – i filled a prescription last evening 16/3/24 – was for 8 50mg tabs naltrexone – $34 so $4.25 per tab – reducing the cost of my yearly treatment to about $150
So for me taking a DMD is unthinkable – they all have side effects – the ldn does not seem to have any side effects apart from occasional colourful vivid dreams