The drugs don’t work, they just make you worse…

OK they do for many, but not for me it seems. No this isn’t a woes me, but after 3 different treatments in it just becomes much like that Hillary Clinton meme if you’ve seen it, where you just walk (or shuffle), chuckle to yourself and you throw your hands in the air.

Come on down Rebif…

Rebif was the first DMD (disease modifying drug) that I was put on over a year after my diagnosis because back then, you needed to have had 2 distinctive relapses post diagnosis before you were considered for a DMD. I was having a course of steroids with each exasperation, but this wasn’t a long term solution as they are designed to shorten a flare, not prevent them. I had the relapse that led to my diagnosis, but the year following that I was continually having back to back relapses and flares, and it wasn’t until then that it was decided that I needed a DMD. Although now over 7 years on, this is no longer the ‘criteria’ if you will, and we have people being put straight onto the big guns as soon as they’re diagnosed (and how it should be!).

For those who aren’t aware, Rebif is a first line Beta-interferon-1a injectable treatment, taken 3 times a week. I won’t get all ‘Sciencey’ on yo’ bums but to sum up, it is a protein found naturally in the human body for defence against viral infections, and as such this will reduce your MS relapse rate by upto 30%. For those who love and adore me (naturally), you’ll know that I am a fan of a tattoo or two, and the odd 19 piercings or so in the younger years, but injecting myself? Nah mate. With Rebif however, it did come with this funky little machine that did all of that for you, you plonk the tube of drugs in, hold it against yourself and press the button to release the needle, all out of sight. I was happy with this middle ground. In 6 weeks, yes only 6 weeks I had another relapse, which was a case that the medication hadn’t had a chance to be fully effective yet, but also due to the continuous relapses over [at least] the previous year I had now entered the ‘rapidly-evolving severe relapsing remitting MS’ stage (WHAT.A.TONGUE.TWISTER). Not to sound dramatic (which is something that I try to abstain from) but that stage name could pass as a Stephen King novel, and the treatments couldn’t keep up with the progression. As such the decision was made by the professionals to remove me from Rebif and to go onto a second line treatment. Usually, you need to decide on the approved treatment choices yourself, but Tysabri was the only option left for me given the rate of my progression, so was a case carrying on with Rebif, switch to Tysabri, or go med free. You can find my blog on the start of my Tysabri journey HERE. A journey that lasted almost 4 years, with only 1 relapse and with the odd flare here and there.

So next to jump onto Hannah’s conveyor belt of drugs, Tysabri (Natalizumab)…

I had a panic attack on the morning going in for my first infusion, which was a fabulous start. There was only 5 or 6 of us sat in the corner of the infusion suite, which had soon risen to 30+ on a rotation basis across different days by the time I had come to the end of my journey. Again for those who aren’t aware, and not to get too ‘Sciencey’, Tysabri is an infusion administered every 4 weeks. It prevents the white blood cells of the immune system from entering the brain and spinal cord (believed to be one of the suspected culprits of MS damage), and as a result the relapse frequency and in some cases, the progression rate can be reduced by upto 70%. As mentioned previously, I have gone into a lot more detail on this HERE.

So fast forward 4 years; going for my 4 weekly appointments, my MS was finally being managed along with Botox, physio therapy, bladder, and speech & language therapy appointments. It was being managed in the sense that I was doing well as I was not having distinctive relapses, but according to my MRI’s and being closely monitored it was confirmed that I was progressing (albeit slowly and subtly) and that I had entered the Secondary Progressive w/relapses MS stage during this time. As I have mentioned before on previous blogs, regardless of the stage, I don’t take much notice of the name it is all just put in the MS bucket.

As with all medications there are risks and Tysabri does come with quite a whooper; a brain infection called Progressive multifocal leukoencephalopathy (PML) – more info on that can be found on the MS Trust website. The long and short of it is that before starting Tysabri all those years ago I had to have a number of pre-assessment tests, and testing for the for the virus responsible for the disease was one of them (John Cunningham Virus (JCV)), of which I come back positive for. Again, it was my choice whether or not to go ahead with Tysabri knowing the potential risks, but on the understanding that when/if the time comes that my risk for PML becomes too high that I am to come straight off it. That came in Febuary 2018, and despite Tysabri reducing the disease activity as far as relapses go for the previous 4 years, my MRI was saying different and the decision was made to move onto the next treatment.

Lemtrada (Alemtuzumab), where are ya? Get up here…

April 2018 I had the first of two rounds of Lemtrada which spans over 2 years. The first round is an infusion administered over 5 consecutive days (roughly 8 hrs/day), and the second round a year later is administered over 3 consecutive days, of which I had in April 2019. Now there are some pretty intense side effects during and following this treatment, and I will only mention the ones that I experienced over the 2 courses. Rashes, hives, headaches, nausea, trouble sleeping, itching, requiring a nebuliser at times and red flushes over the body. Although all of those were managed extremely well and only lasted during the course and/or a couple of weeks after receiving the treatment, another side effect that is here to stay had developed, and that is an under active thyroid. The latter is under control now with (yet more) meds, but my body has played ball with this health issue – and that’s a HOME RUN! The first round worked absolute wonders for me, I truly felt I (and did to an extent) that I had my independence back. I was living life on my terms, and not MS’s (for the best part – Lemtrada or any DMD is NOT a cure). My greatest achievement during this time, if ever was being able to take a trip around India for 5 weeks, an experience that I hold very dear to my heart and one I am so grateful to have had in my life.

My MRI came back showing improvements with fewer lesions and no evidence of disease activity (NEDA), and naturally I went along to my 2nd round in April 2019 with confidence that maybe this is the one – this is the treatment that I have been waiting all of these years for. Unfortunately the second round was a bit of a exorcism moment and I experienced some pretty adverse effects, no more so than normal during the actual treatment, but the aftermath wasn’t what I was expecting this time around. With that said, about a month later the awful hives and itching had settled down (thanks to my main babes, steroids), but I haven’t been able to fully pick myself back up after the round 2 knock out, especially with a relapse thrown into the situation.

Below are pictures showing the difference of how my body handled the visible reactions for each course.

April 2018
April 2019

I am now 12 months post round 2, and unfortunately the treatment has not worked for me this time around. After my recent relapse I am now at a crossroads as to what to do treatment wise. Go for a 3rd round of Lemtrada, start a new DMD, Ocrevus, or just closely monitor how I am, try to get over this relapse as much as I can and to not take any medications at all. Lemtrada is meant to be an ‘in,out, 2 years, done with DMDs’ sort of thing, but sometimes a 3rd round is needed to completely seal the deal so to speak. Ocrevus is again an infusion but administered in one session for a few hours every 6 months, which targets a particular marker on the surface of those white blood cells. As for going med free, I don’t feel that I am ready to go down that path just yet (if ever), and that will be the absolute last option for me.

I still have a few months to decide, and you never know, all of this resting of being in lockdown and living life on my terms (albeit under government advice), may actually be that beneficial treatment that is needed (certainly for the interim, at least).

Stay safe everyone

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