Jenny I am about to start a new phase of my MS journey…..a full 25 years after my first MS symptom, I am about to start a Disease Modifying Drug (DMD) called ‘Tecfidera’.
Will I have to inject myself? How is it going to help me? What will the side effects be? I had all these questions and more when my Neuro pointedly recommended that I take the drug when I saw him a couple of weeks ago – in fact he said, ‘I am going to be your Father now, and tell you that you have to take it’.
The answers to my questions were as follows:
It is taken as a pill twice a day
He doesn’t know if it definitely is going to help me, but he hopes that it might help my disease progression to slow down
The side effects can include flushing, abdominal pain, nausea, vomiting, indigestion, itching… oh, and, in EXTREMELY rare cases, PML, a potentially life threatening brain infection
Ooooh, where can I sign up?! Sounds tempting, doesn’t it?
I actually refused to take Tecfidera when it was first recommended to me, two years ago. When I asked at that time how it would help me, I was told that it would reduce the number of relapses I have. Considering I hadn’t relapsed in almost 9 years at that point, it seemed a bit pointless. Add to that the fact they expected me to drive a 3-4 hour round trip every month just to collect the medicine and it was a no brainer for me to say no. But this time? Well, circumstances have changed. For one thing, they would now deliver my meds to my house – within a pre-arranged two hour time (as easy as a Tesco delivery!) Secondly, and perhaps most importantly, I just want to stop getting worse. I am desperate to stop getting worse. So desperate, in fact, that I am willing to pump my body full of an immunosuppressing toxic drug. Because as much as I stick to a low saturated fat and dairy free diet, as much meditation as I do, visualising myself ‘healing’, as much as I bounce on my mini trampoline to keep my legs strong… I am still progressing. And pretty rapidly too.
EDSS stands for ‘Expanded Disability Status Score’ and you know what? My score has gone from a number 1.5 in 2012 to 6 in 2016 (click here for a breakdown of the stages). That is a huge jump, from ‘no disability, minimal signs’ to ‘requires a walking aid to walk about 100m with or without resting’. I am more than half way up the scale… and guess what number 10 is on the scale – ‘death due to MS’. I am sorry for being dismal and gloomy, but I am trying to be completely honest about my decision to take the meds… maybe as much to myself as to others. I have always had 100% faith that my ‘healthy living’ would help me to heal, or least slow down my progression.. but thus far it hasn’t. Or maybe it has and I would be even more disabled if I had not started it.
Either way, my plan is to stick to OMS and to take the plunge and try the Tecfidera. I feel apprehensive – I’m the kind of person who prefers to drink a glass of water to combat a headache than down a paracetamol – but right now, I am at the stage where I think ‘whatever it takes’. I have been scaring myself watching people experiencing Tecfidera side effects on You Tube, but ‘whatever it takes’ is the tagline of the OMS recovery plan and I am going to try and remember that when/if I am doubting my decision. Any slowing down of my MS progression will be worth it, even if it means I have to spend time feeling permanently sunburned or with my head down the toilet.
I will keep you updated! I would love to hear from anyone else on Tec too.
Best of luck with your new treatment
Thank you Declan! I am surprised that it was recommended, but I’m willing to try anything now.
Hopefully this treatment works for you. My husband was prescribed Famprya and the list of side effects and comments on the web by people using it was horrendous but once he started to use it, nothing. It works for him and no side effects at all. He was also only given this once he’d got to a bad enough stage which was disappointing in one regard but helpful in another as it’s made some difference for him.
It is great to hear that it is making some difference. I was surprised I was prescribed Tec, as I have been relapse free since 2005 and am sure I am SPMS. But my most recent MRI showed one active lesion, so I guess they are treating that and any subsequent ones. I guess you don’t suddenly become SPMS, it is a gradual shift. So pleased to hear your husband hasn’t suffered from any side effects!
All the best Jen, please keep us informed. I hope it works, you have a good neurologyst it worth while trying. I started rrms 2010 and i was coping well edss low until 2 years ago, now edss 6 or so like you despite on medication. It is very upsetting at times. Keep fighting.
Jen how can i send you a private message? Reme
Hi Reme, are you on Facebook? I have a page there called Tripping Through Treacle that you can contact me on via messaging. Thank you, as ever, for your comments in my blog 🙂
Hi Jen. My name is Jonathan, but most people call me Johan. I am from Michigan. I found you on The Mighty and then went to your blog. I’m a 47 year old, divorced male, with no kids. Your article of 10, Oct., 2016 reminds me of me. I was on Tecfidera for about 9 months or so, after a year of Copaxone. Now, I am on no prescription meds but still do a lot in an attempt to lessen the effects of my MS. I was diagnosed with SPMS in April, 2012. I stopped working in Nov. 2014 due to MS. And have been investigating, checking out and following OMS ever since my cousin in the Netherlands (a 40 something year old male with MS) turned me on to it, about 4 yrs. ago now. On the EDSS scale I would say I am a 6.
I experienced injection site reactions with Copaxone and flushing with Tecfidera all the while continuing to progress in my disability. I walk with a cane, don’t go anywhere without it and still drive. I wouldn’t say I am desperate but maybe I should be. I am considering prescription meds, Lemtrada, Tecfidera, Copaxone; I don’t care really. I have been unable to find a medical provider whom I trust completely. I too am continuing to progress, have been for about 5 yrs. now and if it continues at this pace I fear for my future.
I also wonder if I might be worse if not for stuff like OMS that I am trying. I do have a program of sorts if you know what I mean. I got my e-mail of Whatever it Takes, not long ago. I believe in community and rely heavily on the computer via blogs, comments … whatever. I like to think I am smart when it comes to dumb stuff on the internet.
You seem like a cool lady, even though I had to look up Treacle. Love the sun shot. Thanks for posting and looking forward to more.
JE
Hi Johan and thank you so much for your comment! Yes, ‘treacle’ is very British – like molasses I guess. It feels like I am struggling to walk though it every day!
I think that support thorough the internet and online resources is so important. I know for me, it is a way of connecting with other people with MS – I don’t know anyone else in real-life going through the same struggles and experiences that I am.
I think in regards to OMS, it’s not going to hurt trying and as I mentioned in my post, I often wonder how much more I would have progressed without it.
Wishing you the best of luck with it all and thank you again for your lovely comment.
[…] on the lower dose of 120mg twice a day, then moved onto 240mg twice a day. As stated in my previous post, I was pretty anxious about the reported side effects; flushing, stomach problems, PML…but […]
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Welcome to Tripping Through Treacle!
Thank you again Danny! Have a fab weekend 🙂
🤗
Hi Jen. I have had multiple sclerosis for about 30 years. But I was only diagnosed four years ago. I took Avonex for a year, Rebif for about six months, and then Tecfidera for about a year. I was very pleased with using the Tecfidera since I was having difficulty with the shots. My right hand is so weak that it makes it difficult to not only give myself a shot but also to find a place that I can use my left hand.
My doctor monitored my white blood cell count every three months. Unfortunately my white blood cell count dropped to a level that was not acceptable. I took a baby aspirin with each Tecfidera pill, and the flushing did not occur. So right now I’m not taking any MS medication. My doctor is pretty sure that I have progressed into the secondary progressive stage. And of course there is no FDA approved medicine for that stage.
There seems to be a lot of research and up and coming medicines that might be approved for secondary progressive. And I certainly hope so!
I find it very frustrating that there are no meds for SPMS. I am sure that is the stage that I am in (no relapses for 11 years, quick progression), but the neuro seems reluctant to diagnose it because I had a patch of inflammation on my last MRI three years ago. I’m sticking with Tec as I have had minimal side effects but hope that something comes out for SPMS soon! Thanks for sharing your story 🙂
You are most welcome!
[…] see if it can slow my progression. I am happy to try anything I can that may help, hence being on Tecfidera, and changing my diet and lifestyle through the Overcoming Multiple […]
[…] check-up with my usual neurologist last Friday. Rather than him telling me off for coming off the Tecfidera (as I went for a second opinion with another neurologist), he spent his time chatting to me, […]