Dizzy and I are off to see the nurse tomorrow for any last questions, blood tests and final medication decisions. So to help with our decision, we have decided to do a little post on the three drugs we have been offered, and the pros and cons for each. 🙂
For anyone who stumbles across this post, we are not specialists (although Dizzy will tell you that she is a neurologisty donkey! 🙂 ), and the pros and cons that apply to us, may not apply to others. 🙂
Also, please let us know if you have any to add to (Dizzy is ready with her notebook and pen)! We always love to hear after peoples experiences/opinions. And if you are having the same tricky decisions as us, let us know! And hopefully this little post will be of some help to you too. 🙂
Gilenya
How does it work?
Gilenya works by attaching to the white blood cells – lymphocytes. This then causes these cells to become trapped in the lymph glands, which prevents them from causing any trouble in the central nervous system.
Who can take it?
It is for people with relapsing remitting multiple sclerosis. It has been available for adults since 2012, and for children over 10 since 2018. Gilenya is a second line defence drug, which means it is for people who have active MS, or who have tried another DMD (disease modifying drug) which has not worked for them.
How do you take it?
Gilenya is taken as a pill once a day. This is a huge bonus for us, as it means no needles!
What are the benefits?
Gilenya has been proven to reduce relapses by 50% and disability by at least 30%. It is also a drugs which has been available for a long time, which means it has a good long term safety profile.
What are the side effects?
- Headaches
- Back pain
- Changes in heart beat
- Eye pain or/and blurred vision
- Increase in blood pressure
- Depression
- Cough
- Basal cell carcinoma in rare cases
This is a drug that can cause changes in heart rate and blood pressure. For this reason, the first dose is given in hospital, where they can monitor and look after you. 🙂 Although, most people are fine. 🙂
Another issue to consider, is that some people experience a worsening in symptoms and disability when coming of this drug. This is rare, but in some cases can be serious.
Ocrevus (Ocrelizumab)
How does it work?
It works by targeting a marker of the surface of B white blood cells (a type of lymphocyte). Once it finds these cells, it then destroys them, which means they cannot go on to be naughty and attack the central nervous system.
Who can take it?
Ocrevus is for people with relapsing remitting MS and primary progression MS (currently the only treatment for this kind of MS).
For RRMS, it is an highly effective drug, and is seen as a high level form of treatment. It is for people who has active or very active MS. It is also used for people who cannot, or do not want, to take Lemtrada (which is extremely effective but does carry a lot of potential side effects).
How do you take it?
Ocrevus is a six monthly infusion. This means you do need to spend the day in hospital, and the infusion does take a few hours.
What are the benefits?
Ocrevus reduces relapses by about 70% (some say as high as 78%) and disability by 50%.
What are the side effects?
- Infusion related reactions, such as headaches, rashes, sickness and fever
- Increased chances of infections
- Flu
- Bronchitis
It is also common for people to have a small period of feeling a little rubbish just before an infusion. This is immediately rectified with the next dose of treatment though. 🙂
Cladribine (Mavenclad)
How does it work?
Cladribine works by reducing the number of white blood cells: the T and B lymphocytes. The hope is that this will kill off some of the naughty white blood cells, who like to get a little enthusiastic, and that the new ones will not have this naughty trait. 🙂
Who can take it?
Cladribine is for people with relapsing remitting MS. It has only been available since 2017, so is still fairly new. It is a second line defence drugs, which means it is for people with active/evolving MS or/and people who have not got on well with the first line defense drugs.
How do you take it?
Cladribine is another tablet drug (yayyy!). And with this one it is taken as two courses over two years. In year one you take course one: tablets for up to five days, which is then repeated a month later. A year later you take course two, which is a repeat of year one.
After these two courses, your treatment comes to an end, and hopefully your MS will be a well-behaved for the next few years. 🙂
The number of tablets is also dependant on your weight (which is definitely appealing, as I Dizzy and I are only little).
What are the benefits?
Cladribine is suppose to reduce relapses by 58% and disability by 33%. It is also a drug which seems to be well tolerated by most people.
What are the side effects?
- Headaches
- Low white blood cells
- Increased risk of viral infections, such as shingles
- Back pain
- Increased fatigue at some stages during the two years
This drug was originally pulled (10 years ago) because of cancer concerns, but there has been no recent or further evidence to support this. Just keeping an eye on things, and feeling for any new lumps and bumps, is always a good idea though.
This is also a fairly new drug, which means it does not have the long term safety profile that some of the other drugs have.
All of these drugs are not baby friendly: no no to pregnancy during treatment. All can be stopped or halted to allow time for this though. 🙂
And although some of these drugs can increase the risk of more serious infections, tests are done prior to check that you’re not secretly carrying any viruses, and that it is as safe as possible for you go ahead with the treatment. 🙂
Useful websites:
Nice and clear!
Thank you 🙂 How are you Cathy? xxx
Ok – rotten experience on steroids, waiting for second opinion on changing treatment . Hope you are doing ok x
I hate steroids. They really don’t like me either! x Have you had the second opinion yet? Sending big donkey hugs! xxx
Thank you! I love your blog and I especially love your reviews!
Thank you so much Meaghan. It really means a lot to us. xxx
You know I have several family members living with MS. My oldest son (36) could be joining the list. Going through elimination testing first. Referred him to your blog. 🙂
Excellent post today!
Aww, I wish him lots of luck with his decision. Does he have a first choice yet? xx I hope you are all ok. 🙂 xxx
I hope all goes well for you and that despite the mentioned side effects, you experience none!
Thank you so much. I finally came to a decision, for the 2nd hospital to then say no. :/ So had to go back to the ‘decision’ board! xx How have you been? 🙂 xxx
Decisions take time to make and I know the feeling as I am now making a decision for 2 major surgeries on both hands and guess what, I do not have a decision just yet!
What are the surgeries and the pros and cons? That sounds a harder decision than mine! xxx
A lot of it I have to figure out. Tough!
Good luck! And always here if you ever need a chat. 🙂 xxx
I have been on Gilenya for years and it seems to work pretty well for me. I will say, I do experience a lot more sinus issues on it. Honestly, it has worked well keeping my MS at bay and I do not plan to get off of it until there is a cure. I did go off of it for a few months several years ago, but the MS got worse and there were more lesions when I wasn’t on it. This is just me though and everyone tolerates it differently. Best of luck to you and Dizzy!
I remember when that happened with you. 🙁 xx But the 2nd hospital decided last week that I can’t have cladribine or gilenya… All that deciding for nothing! But I’ll get there eventually. 🙂 Will hopefully still be on something by Christmas. 🙂 xxx
Oh goodness, I am so sorry you are dealing with this. MS medications can be very difficult and complicated, but I do think some doctors make it more difficult than it should be. Doctors in the states all work to pad their pockets and tend to work with the pharmaceutical company that pays them the most, I am not saying its the same in your country though. What are they leaning towards for you? I am here for you if you ever need to vent or chat!! xxx
I decided on cladribine and had all the tests done , but then the London hospital said no, 🙁 I am now going to do on copaxone for the time being, but hopefully will get cladribine one day! 🙂 How are you? xxx
I saw on Twitter you had an exhausting day with your appointment and tests. I really hope all goes well with results and starting on a new course of treatment if that’s the way things are going. It can be a bit unnerving and confusing starting something new when you don’t know how your body will react, whether you’ll get side effect of if it’ll help, but there’s always that possibility it could be super beneficial so I’ll be keeping my fingers crossed for you. You’ve done a fantastic job with this post – you’ve essentially boiled down so much of the confusing and overwhelming stuff into such succinct, easy to digest key points, which is fantastic. I’ve heard of these meds but didn’t know much about them or their side-effects before, so I’ve learned something new too. xx
Thank you Caz! Even though the 2nd hospital said no, and now I’ve gone with an injection one. I hate needles! So already getting in a bit of a state… :/ xxx
Thank you for this information. A lot of people who have MS have inspired me to tell my story in front of the world. I have created my YouTube channel and here is my journey. And one more thing, MS ain’t gonna stop any of us.
Congratulations with your youtube channel. That’s a brilliant idea, and will be so helpful for others. 🙂 xxx
I hope you find the perfect solution for you Heather.
Thank you Linda! 🙂 xxx
{{{{ Hugs to you and Dizzy}}}
Best of luck to you!!!! Thank you for sharing the research you have done!
Thank you Grace. I hope you are doing ok. 🙂 xxx
Hi Diz,
Great article. I am on my 4 the DMT now.
Speaking from experience, Ocrelizumab is not ‘all day’ in the hospital.
The first two infusions (1 X 600mg dose split into 2 X 300mg doses two weeks apart for the first time) take about 5h each. Thereafter, it is about 4-4.5 h a pop for the full 600mg dose.
The Europeans have approved a much shorter infusion time of about 1/2 and there is a big trial in the US trying to get approval for about a 1hr visit.
Main message is don’t let the time required for one of the most effective needs be off-putting.
Keep up the excellent articles.
@DJS_KBO
Thank you Dominic. This is great to know, as I do have an image of sitting there all day with the needle! 🙂 I have also heard about the trials, which seem to be going really well. xx What 3 DMT’s where you on before? xxx
beta interferon (Rebif), glatiramer acetate (Copaxone), dimethyl fumurate (Tecfidera)
I’m new to your blog and glad to find it. I was dxd in 2003 @ 25yrs old, Copaxone was the first DMD I a put on at that time. There were only 4 or 5 options at that time and all were injections. I’ve now been on all the meds available with the exception of Mavenclad. I have seen some incredible results for long time suffering friend’s who are on Ocrevus. I hoped it would be the one for me that finally broke through and I was able to tolerate. Sadly, for whatever reason I have not been able to tolerate most the medications and the early DMD’s that were meant for RRMS just didn’t do a thing. I know your insurance system works a bit differently than ours and you may not have the freedom to change to medications as freely as we do here. Hopefully you can get on what you feel is the best option for you and have meds to help with symptom management. You have a new fan!! I will be prayin for ya!! Jen
Thank you so much Jen! I was diagnosed at 25 as well, and so far have not had the best luck with MS treatments. I react really badly to the steroids and, with my first DMD, I started reacting too after 6 months. But I have only tried one DMD so far! So hopefully the next one will be fine. 🙂 xx Are you on anything at the moment? And how are you doing otherwise? 🙂 xxx