Everyone’s experience with multiple sclerosis medications is different. But I have been on most and I’d thought I’d share my experience.
A couple of years after being diagnosed and giving birth to my beautiful daughter and nursing her, I decided to heed my doctor’s advice and start taking Betaferon. After being on it for almost a year I had what I thought was a major relapse. I had pins and needles all over my body. My neurologist suggested it wasn’t that bad but if I wanted I could take steroids to help me get better faster but I declined and promptly came off my medication.
I felt that after almost three years of no problems when I wasn’t being treated; what did the medical community know? I could beat MS by myself. Three months after stopping treatment I had what I consider to be the worst relapse I’ve EVER had since being diagnosed with MS. I couldn’t stand, let alone walk. My whole world was spinning; I had no balance and as for eating, I couldn’t keep anything down.
I saw my specialist a few times over the course of that many weeks because they had to rule out anything else before jumping to MS. When it was finally confirmed that it was MS, I took three courses of intravenous steroids over three days and immediately began to get better.
The following week I promptly started Rebif; a drug similar to Betaferon but apparently stronger. I had the usual side effects of chills, achy feelings but that all settled after a few weeks. I stayed on it for a few years; it was working perfectly. I was able to work in a high stress environment and be successful.
But after a few years the treatment started to wane and my specialist decided to try a chemo tablet, which really helped, but I had to come off it when it affected my liver. That was around the time that they were trailing Gilenya in Australia. My specialist wasn’t on the trial but it was at the phase where specialists were being given 12 packs to give to selected patients and he chose to give it to me.
Gilenya had its side effects but the biggest difference I noticed was how well I felt. After taking a few months off work I was able to go back full time. I was on Gilenya for two years when I needed an operation for an unrelated matter and the hospital ran an ECG. Imagine my surprise when they found a murmur.
After being checked by a cardiologist, he found I had a blockage in the left ventricle of my heart and it wasn’t pumping properly. When I spoke to my specialist I was told that it is a little known side effect of Gilenya that can cause conduction problems in the heart.
Once I had my operation, I was prescribed a new tablet that had come out in Australia –BG12 (Tecfidera). I was on it for a couple of months and I had an allergic reaction so I had to come off it.
Now I’m taking Copaxone; injections once a day and this one comes with a major side effect – panic attacks. They’ve settled but I’m not feeling as good as I was on the Gilenya. I’m hoping that something else will be brought on the market to help but until then I will be staying on the once daily injections.
Have you tried many medications before one worked for you? Have you experience similar (or different) side effects?
Vivian was diagnosed with MS in March 1999, although symptoms began in 1995. I previously worked as a financial adviser but had to retired due to the worsening of my symptoms. On the positive side, more free time allows me to work on my writing. I am 43 years old, married with two beautiful girls, aged 14 and 11 and reside in Australia.