A disclaimer – I realise that this series of posts on medication are quite negative. In no way, shape or form am I advocating to pursue life post-diagnosis without treatment unless that is advised by a neurologist. Since beginning this series on MS DMDs, I have been diagnosed with Common Variable Immune Deficiency which we believe impacts my body’s behaviour on immunotherapy.
It was May 2014. My neurologist had just told me I had to stop Tecfidera as I had developed severe lymphopenia and was at risk of PML (Progressive Multifocal Leukoencephalopathy – an almost always fatal brain disease). He told me not to worry about the fact that I couldn’t continue with Tecfidera as there were quite a few other treatment options for me to choose from. Nevertheless I was still a bit upset, I had put my body through hell adjusting to Tecfidera and after finally beginning to tolerate it was being rudely yanked off it. I felt like it was all so unfair and that the universe was playing a joke on me. Wasn’t it bad enough that I had MS?!
Once my pity party ended, I realised my next treatment was an easy choice. I had said a resounding NO to all injectables, and Aubagio was not appropriate for me as a female of child-bearing age. That left Gilenya. I had a month or so without any drugs to flush Tecfidera out of my system, and then it was time for my first dose.
Due to potential heart complications, you have to take your first dose of Gilenya in hospital and stay there for 6 hours of observation, where you have ECGs to make sure your heart is alright. After my traumatic introduction to immunotherapy with Tecfidera, I was only too happy to be in hospital for my first dose of Gilenya. In fact I can vividly remember lying in a recliner in the day treatment centre, clutching my stomach in anticipation for the pain to hit me. But it didn’t, and I literally skipped out of the hospital that evening overjoyed that I had tolerated my first dose without drama.
Shortly after my first dose I was sent for a routine check-up with the opthalmologist to check that I wasn’t developing macular edema (a common side-effect of Gilenya), but my eyes were fine, so my asymptomatic MS was relegated to the back of my mind again.
The bad news
I should have known it was too good to be true . After a few months of being on Gilenya, a blood test showed that my lymphocyte count was dangerously low again, à la my issue with Tecfidera. I could feel my stomach back flip as my MS nurse gave me the news. I felt like I was about to vomit until she said the magic words, “you can still stay on this drug.” The compromise was that I needed to half my dose, and we’d monitor my lymphocytes as well as any potential neurological symptoms arising from a reduced dosage.
The good news
Anyone else feeling well overdue for some good news?? Because I was by this point. And then for once my body decided to do something nice for me . The 1 year anniversary of my diagnosis rolled around so I had MRIs to check in on my brain and spinal cord. The scans showed no new lesions on my brain, and my spinal cord was so clear that my neuro told me looking at it you couldn’t even tell I had MS. Hooray! I also hadn’t developed any new neurological symptoms despite dropping my dose, so bloody well done bod, sometimes you are aok.
The awful news
Sometimes, body, you are aok until you’re totally SHIT. Head’s up, this is going to get a little TMI.
About 6 months later, I had the worst period of my life. It was AWFUL. I was convinced I was bleeding to death – I deduced that I was either having a miscarriage or had cervical cancer. Just a tiny bit stressed, I booked in to see both my GP and my gynecologist (the latter turned out to be a very important decision, read here), but I couldn’t get in to see either of them that week. At the same time I noticed I was covered in bruises, and also had a strange rash. I ended up calling Nurse On Call who put me through to a doctor, who told me as long as I didn’t feel like I was on the verge of passing out then I mustn’t be losing too much blood, so my situation wasn’t urgent. Hm.
Still not satisfied, I called my MS nurse and asked if any of this was a side effect of Gilenya. She said no, but recommended since I was nervous that I get a blood test so my GP would have the results at my appointment. So I had the blood test that evening, and what would you know I emerged from the city loop on the train to work the next morning and had a bunch of missed calls from my GP.
I hurried to my office low-key FREAKING out, and called her back as soon as I got there.
“Morgan, a regular platelet count is between 150-450… yours is 12!! What symptoms are you currently experiencing?”
I told her everything, and she explained that the rash was called petechiae, and it was caused by broken capillaries which were leaking blood into my skin. This is because platelets are the agent that clot your blood so you don’t bleed out, which explained why I looked like I’d been in a terrible fist-fight and was convinced that my period was killing me. My doctor told me this condition was life-threatening and that I was at risk of internal bleeding, so I was instructed to go to emergency for an urgent blood transfusion and to not bump myself on the way. No pressure.
The minute I got to emergency I was admitted and had my body half-drained of blood for more testing. This quickly confirmed a diagnosis of severe Idiopathic Thrombocytopenia Purpura or ITP – the fancy term for having low platelets with no known cause (idiopathic). A couple of emergency doctors stood around my bed debating whether to give me a platelet or an immunoglobulin transfusion, then decided both of these would be futile as whatever was currently destroying my platelets would just destroy a transfusion anyway.
Eventually haematology arrived and dropped some bombs:
- Most adults with ITP never recover, I would likely have this blood condition for life.
- First line treatment: I was going to start on a high-strength course of Prednisolone to slow my immune system from destroying my platelets.
- If my platelets relapsed after weaning off the Prednisolone, I would have a bone marrow transplant.
- And if that didn’t work, we’d remove my spleen.
(I had no idea what my spleen did, but I was fairly certain that I didn’t want it cut out of me.)
On Prednisolone my platelet count rose to 30 within 24 hours, so I was discharged from hospital the next day, under strict instruction not to exercise or do anything that might hurt me. Given my platelets had responded well to Pred, haematology were comfortable that they would keep increasing from the comfort of my own home. As nice as it was to go home, I was scared leaving the hospital. I felt incredibly fragile, and was terrified of anything touching me lest it cause internal bleeding. Within a week though my platelet count was 500! The steroids had done their job, and now I had to wean off them over 3 months and hope like hell my platelets didn’t drop once I stopped completely.
As it turned out, I didn’t need to worry at all. Because a few weeks later my MS nurse called to tell me that they’d worked out Gilenya was the murderer of my poor platelets. As my low platelet count now had a cause and was therefore no longer idiopathic in nature, this meant I didn’t have ITP but just plain old thrombocytopenia. I had to stop Gilenya immediately, and was told in the absence of Gilenya my platelets should stabilise.
Thrombocytopenia is not a listed side effect of Gilenya, and my neurologist had never heard of it happening in Gilenya patients before. The haematology department had seen this a few times though, and a simple Google of the 2 returns a plethora of results hypothesising this relationship. This has since lead to the Monash haematology department writing an article on the correlation between Gilenya and thrombocytopenia for the BMJ. I’m case 1, you can read it here 😉 #Famous
I was relieved beyond BELIEF that my little platelets were going to be fine. But this meant I was back to square 1. Again.
Time to pick a new treatment for my MS…