Change for ME was recently contacted by one of our longtime followers. She had a very important story to share. Anyone who follows the news about ME and CFS would have by now heard of the Rituximab drug trials that have have been going on in Norway. The research team have been having great success in treating patients with the drug. What may have not have been talked about enough is the fact that this is a very dangerous drug for some people and it should be used with extreme caution. It has recently come to our attention that some patients are trying to gain access to this drug on the sly right now, before waiting for the research to be completed. We have decided to publish this story not to in anyway discredit the amazing results some patients in the trials have achieved but to warn others of the risks involved. The author of this story has asked to remain anonymous because she is far to ill to be fielding questions and inquiries from the general pubic. We can attest to the story as being genuine and accurate.
For a long time, Rituximab was the million dollar joke in our house, I thought my chances of trying it were slim to none.
‘Do you want anything else?’ My carer would ask before leaving the room.
‘A fresh bottle of water and some Rituximab?’ I’d grin cheekily and she’d roll her eyes at me for the thousandth time.
And then suddenly, five years ago it all changed, by dumb chance and a little luck we’d found a specialist and next thing I knew I was on my way to hospital.
On the day of my first infusion, people were saying I was very brave.
But I was terrified – I kept thinking – brave or foolish – only time will tell.
My thoughts were constantly assessing the pros and cons:
On the pros side: Rituximab – has a good safety profile, there have been clinical trials of it with ME/CFS patients overseas, there was rumoured to be more trials soon – I was just getting a head start, – I could be cured in ten months(!).
On the cons side: my body reacted to everything, I had to go to hospital, Rituximab stays in the system for three months at a time, there’s that weird reactivating viruses/leukaemia risk, multiple side effects, possible worse health – I only have 30 mins health a day, there’s not much wiggle room in my health, the lady on the blog I followed didn’t do so well, – not to mention, it takes out a large chunk of your immune system.
However, the pros won out. I was incredibly sick and desperate to get well.
It helped that the doctor was realistic (we don’t know what’s going to happen), actually understood ME/CFS and made comments that made sense in the context of my illness. So many lovely doctors let slip comments that show they really don’t understand ME/CFS – but this one ‘got it’.
We were all hopeful.
The first infusion did cause a bit of an allergic reaction, they gave me steroids to counter that, but I still got a slight temperature and found that afterwards I couldn’t walk to the bathroom without feeling winded. It was like my asthma had been dialled up.
Then in the two weeks to the second infusion, I started to deteriorate and found it harder and harder to write to people.
I felt like I was faking being me, because words no longer flowed.
I got ice packs and placed them behind my neck, where the burning pain and stiffness had permanently moved in. At the second infusion, the nurse thought this was a smart way to avoid a temperature.
I spoke to the doctor, whose face I no longer recognised – all my symptoms were just ME symptoms and nothing to be worried about. He was right, I had nothing new, just more of the same. A lot more of the same.
I struggled to keep doing things. The last non-essential things I did were to send a condolence card to a friend and birthday card/gift to another friend. It took me half the morning to write the first card and the whole afternoon to write the second. My head was swimming and the room was shaking, my tinnitus went through the roof.
I knew that they were the last things I could do, I shut my Facebook, and stopped writing to people, I was in a place both immersed in, and beyond, pain. I couldn’t bear touch or lay on my back or right side, or talk, or walk, or wash myself. My hair grew oily and matted, I wondered abstractly if I had dreadlocks, I knew on some level that that would be bad.
People often talk about living in the now – and that’s where I was, I couldn’t fathom five full continuous minutes of pain, so I just focussed on each breath. I counted breaths on my fingers, closing each one every time I went up to ten and down from ten. That’s how I passed time – time that I was wishing didn’t exist.
It was like that for months, for years. I felt like I was dying every. single. moment. Yet I was fiercely alive underneath it all.
The pain was so intense I was prescribed narcotics (which I now know I’m allergic to), ketamine, benzodiazepines, antibiotics, everything I’d been too afraid to try before Rituximab became an option – anything to end the pain.
That was four years ago now, and it’s taken me this long to slowly recover, back to the level of being severely sick rather than very, very severely sick.
I’m doing better now. My doctors know not to suggest medications to me.
It turns out that my pre-illness profile and ME severity is inline with someone who has overactive mast cells. Mast cells are pretty potent little immune cells and can be triggered by all sorts of stimulus.
As a teenager, I suffered from exercise-induced urticaria, exercise-induced mild asthma and vibration/friction-induced urticaria. As an ME patient, my symptoms are very neurological, brain fog, weird pains and sensations and constant tinnitus are normal for me. I’m also extremely sensitive to chemicals, foods and medications.
I don’t think Rituximab itself was much worse than any other medication, but the way it stayed in my system may have been what made it have such a profound effect. I’d need to live multiple parallel lives to be exactly sure of where the ME stopped, and the Rituximab reaction began, but I’m sure it impacted negatively on my health.
It was a tough and very personal question, – to Rituximab or not to Rituximab?
I can’t answer that for anyone else.
Sometimes, time really is the only way we learn these things. And someone always has to go first.
But next time – I hope it’s not me.