My experience with Tysabri so far
This is not intended as health advicE
Please always talk to your neurologist about drugs suitable for you : )
I'm not sure about you guys but I find the world of disease modifying drugs (or DMD's) for MS to be so overwhelming sometimes. My neurologist is great, but he doesn't sit and explain all the different drugs to me. I usually ask him about a new drug, we'll have a brief discussion, he gives me his opinion, then hands me the leaflet and tells me to think about it. As if dealing with this illness wasn't enough, we then have to way up what drug we should ultimately be taking. With the prospect that it may give us horrendous side effects, halt or not halt disease progression or, on the flip side - be the best drug we’ve ever taken.
I find myself relying on google, my instagram community (you guys) and the MS Society webinars for education.
Not surprisingly, it's one of the most common question I get asked about. So I thought I’d share how I’ve been finding Tysabri so far, my experience and how it’s helping me.
WHY I TAKE TYSABRI
I was put straight on Tysabri when I got really sick and at my worst in hospital (my full story is here). This was a blessing I now see, because I didn't have to agonise over which drug to take as my 1st medication. My neurologist made the decision that Tysabri would be best for me in the state I was in, he handed us the information leaflet and told us to read over it and make our decision. I was so sick and so desperate for my body and life back I agreed to it almost instantly. I don’t even think I could read the leaflet at the time, I just wanted help and I trusted him. My infusion was organised for the next day and I've been on it ever since, just over 2 and a half years. When I later asked my neurologist if it was a drug that he put all his patients on, he said no, only those that need it.
HOW IT'S TAKEN
Tysabri is given through an IV infusion and taken once a month in the hospital infusion room. At St Vincents in Sydney this room is called IBAC.
The whole visit last's about 3 hours. When I arrive the nurses take my blood pressure and temperature and then prepare the infusion. The Tysabri infusion itself lasts about an hour, then they run a flush of fluids which is another 45min-1hr, then they need to monitor you for an another hour after that, so it tends to take about 3 or so hours. My appointments usually start at 10.30am and I generally leave around 1-1.30pm. Sometimes the infusion rooms are busy and the wait times for change over of meds to fluids and the canula removal can be longer. I've written a post all about infusion day with more details on the actual day itself, what it entails + how to prepare for it here in my 9 Tips for infusion day - how to make it less painful and more enjoyable (scroll to 2nd post on this link). If your just starting Tysabri that would be a great post to read as there are a few little tips and tricks I’ve learnt over the years that will help you enjoy the day more.
how it fits in with my lifestyle
Because Tysabri is administered every 28 days it's a monthly commitment. I actually find it quite easy to work into my life and around my work schedule. I usually tell my bosses in advance who've been really understanding. I enjoy having a day in the city and doing something different and I try to make it as fun and pleasant as I can. For long term travel that's over a month it can be a bit tricky. A year ago I spent a month in Singapore, I had 1 infusion the day before I left and one as soon as I returned. Under permission from my neurologist I pushed my dates out a little. I've asked my neuro about organising infusions in other countries before and he said it's quite difficult to do.
Tysabri is fully subsidised by the Australian government if your a resident with medicare. When I initially started Tysabri I had to pay a little amount for it each time, about $36 from memory, but for the last year or so the government here have fully subsidised it. Thank you aussie government!! as the cost per treatment I hear (correct me if i'm wrong) is around $1500 a month.
I've been on Tysabri for over 2 and a half years now (33 infusions) and I tolerate it really well. After my very first infusion I had a very mild upset stomach that quite quickly subsided. Since then I haven't noticed any side effects at all on the day of my infusion or thereafter. I'm able to go into the city afterwards, grab lunch and go shopping if I have the energy. I do notice i'm pretty exhausted that night but I've always put that down to a big day in the city over the effects of the Tysabri.
The biggest thing I noticed in the early days (first year of diagnosis) when I was much sicker were urinary tract infections. I've spoken to others on Tysabri and they've all mentioned this aswell. My urologist put me on to Hiprex which are fantastic. I take one with vitamin C whenever I feel a UTI coming on and they kill all the bad bugs in the urine and the feeling disappears - they are amazing! ask your doctor about them if your having trouble in this area as they are a saviour. I also credit my continued healing from OMS for the improvements in my bladder.
One of the more serious risks with taking Tysabri is Progressive multifocal leukoencephalopathy (PML) if you become JC +. I’m closely monitored for JCV with regular blood work every 6 months, which are sent to Denmark to be tested for "JCV status". This costs around $46 a time. I've written a post on my options if I become JC+ here - Feb 2017 update & more Lemtrada discussion.
HOW ITS HELPED ME
I had very aggressive onset MS and accumulated a large amount of disability quite quickly, you can read my story here to see how bad things got in the end. However once I was put on Tysabri it dulled the inflammation within weeks - my speech returned, my ability slowly improved, the illness had stabilised and things were looking up for me. Before that I was on steroids and deteriorating daily.
I started OMS about 2-3 months after my diagnosis so Tysabri allowed me to stabilize and restored some function when I was in hospital so I could return home. During probably the 1st year and a half I always felt a little stronger after each infusion and I would always hang out for it every month.
Since my initial episode and diagnosis I've had no new disease activity, no relapses at all and my recovery is still ongoing, I feel very lucky. I'm now working, socialising with my friends, cooking, exercising regularly and feeling much like myself again.
Tysabri & OMS
As the months and years have gone by and I've continued to heal the definition between what's helping me the most has become greyer - is it Tysabri? or is it OMS?
It'd say definitely Tysabri in the early days and long term Tysabri + OMS. I don't think I'd have the quality of life, happiness and level of healing I've achieved without OMS. After starting OMS I noticed my fatigue lift within weeks and still continues to. OMS is excellent for symptoms management with the added prospect of healing me completely, reducing and even eliminating relapses and helping to prevent other illnesses. BUT this road would have been WAY way longer had it not been for Tysabri. To have a drug help stabilise me in those early days was a god send, it really sped up the whole process and got me able again. I may not have gotten to this stage in healing so soon, or at all, had it not been for Tysabri.
I hope thats helped you guys, let me know if you have any questions.
I'd also encourage you, if you have an MS blog yourself to write a post and share your experience with your drug aswell, I’d love to read how yours are going too. Please tag me in your instagram posts if you do.
Have a lovely week!