Week 48

Before I started taking Gilenya, I was on a drug called low dose naltrexone (LDN). It is a drug that isn't available on the NHS, so it has to be paid for by the patient with a private prescription. It isn't an expensive therapy. £20 odd per month, so I found it affordable. 

The reason the NHS didn't adopt LDN as a disease modifying therapy  is because the results from the clinical trials they did came back inconclusive. Some people swore by it, but many said it had no effect. Therefore, if you want to try LDN, you've got to fund it yourself. 

Naltrexone  is an opiate antagonist. That means the drug will stop any opioids in your system from working. It is used predominantly for treating heroin and morphine addicts, but it was tried in much smaller doses on people with MS with some success. 

During my time on LDN, I felt stable. I had no improvements or symptom relief, but I didn't progress in any way. 

Remember I told you about LDN being an opiate antagonist? Well, I'd been on LDN for around 6 months and I did one of my big stacks and broke my arm. It was a bad break and I would later go on to have surgery (1 plate and 7 pins). I was in a lot of pain, so the paramedics gave me some morphine nope, not a thing. They gave me some more. Nah, still in pain. They had to get another medic to give me a third lot as the other one had given me the most they were allowed to. "What do you mean you're still in pain? You should be as high as a kite!" The puzzled medic told me after my third dose of morphine 

I never gave it a thought at the time, but despite being in a small dose, the naltrexone was working against the pain relief. 

I carried on taking the morphine, despite it giving me no pain relief whatsoever for another few days. After a couple of days, the morphine did start to have a minimal effect, but my arm still bloody hurt. I was laying in bed one afternoon when it hit me. I remembered that I had Wifey bring my 'ever growing' medicine bag to the hospital for me, but the LDN has to be chilled, so it's kept separate from my other meds. I'd forgotten all about it. Hang on, that stuff is stopping the pain killers from working! I hadn't had any for nearly a week and the morphine was very slowly starting to have effect. 

I haven't had any since. As soon as I came out of hospital, I was told I would be having Gilenya in the near future, so I never bothered re-starting the LDN. 

I'm contemplating having another go on LDN. Shall I wait till they withdraw Gilenya or shall I get  back on it now? I don't know the answer to that just yet, but before you question why I've made you read all that, it's because I haven't got any updates on Gilenya, it's all ticking away quite nicely. 

Happy Friday,

Dan