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A Patient's Voice: EMSP Recap


Thursday May 15 2014 11:30 AM

Whenever I meet a fellow MS-er, I ask them their name, where they are from and what meds they are on. It doesn’t take long to move on to the benefits of their prescribed drug and if they outweigh the side effects brought into their everyday lives. Some side effects and limitations of a drug are easy to swallow. I had no bother cutting out the operation of heavy machinery. Others side effects are so obvious- they make me smile. For example, my sleeping tablets warn me that they cause drowsiness. Who knew!!!! Others are not so simple! 

The three little words “Flu like symptoms” sounds innocent enough when you read them, but I’ve come to hate those 15 letters. Every week for three years, I experienced “Flu like symptoms” for the day after I took my MS drug. That adds up to roughly 156 days when I felt like pooh- not because of my illness but because of the drug I was taking. I tried to work around the problem. I tried taking the medication at night so that I might sleep through the side effects. I tried taking the “Flu like symptoms” on a low profile day (sorry Wednesday!!!) when not much happens. I tried waiting to see if the side effects decreased over time. They didn’t!
Those Woeful Wednesdays always followed the same path. Struggling to get through everyday tasks; I battled to do what I had done the day before and was able to do the day after. Wednesday usually ended with me fighting with the people I love because of the miserable side effects of my weekly jab. It was depressing to know in advance that I was going to feel like crap one day a week- especially if we were doing something nice, like going on holidays. No matter how hard I practiced the “It’s fine- you guys go ahead without me! “line, I hated missing out.
I spoke to my Neurologist about the Hobson’s choice I had. It boiled down to the following dilemma: “If my MS drug is reducing the chances of me relapsing- is it worth feeling awful for one day a week?” Side effects are something that we “suck up” because the drug we are taking provides a benefit that outweighs the negatives- or so we hope! My G.P nails it when he tells me that it’s not Smarties I’m taking.
Isabelle Moulon from the European Medicines Agency echoed my dilemma when she spoke of “the patient’s voice in the evaluation of medicines" at the EMSP Spring Conference in Dublin. The well worth reading whitepaper says that:Since patients will be the ones taking these medicines it makes absolute sense to incorporate their values and their knowledge at different stages throughout the long process of developing, assessing, licensing and monitoring medicines. I hear ya Isabelle!
She also spoke about something called the Black Triangle which is used to identify medicines that are being monitored particularly closely by regulatory authorities. It felt empowering to know that steps are being taken to treat the patient in the trenches as a stakeholder whose knowledge, views and preferences are as significant as any of the other stakeholders in the healthcare process. Patient power!!!!      
It’s a tough decision to change to a different drug. It’s a bit like breaking up with your current partner and seeking a new relationship. Is it better the Devil you know? Maybe the new drug will be worse than the one you were on but there is also the chance that it will be better. All the shiny literature woos you to change but when you get down to the everyday realities- you have to be a brave grown-up and ask if it’s worth the risk. I went solo for a while after my previous drug break-up in November and relapsed over Christmas. Whaaaagh!!!!!!!! I wanted to be on a drug but it had to be right one for me (this really sounds like the dating game!). I’ve been with my current drug for three months now and its so-far-so-good. No more Woeful Wednesdays! No more “Flu like symptoms”! 
The experience made me think about the role of the patient in drug evaluation. How do you make an informed decision on a medication you are offered? Do you rely on Doctors, online forums, fellow MS-er’s or drug literature? Have you been in a similar situation where the side effects of a drug significantly decreased your quality of life? Have you ever been asked for feedback on the cost-benefit of a drug you are on? I would love to hear your experiences! 

Author: Joan Jordan

Tags: patient, evaluation, medication, blacktriangle, emsp, conference



Thursday May 15 2014 15:58

Great Article, on a great topic.
It seems obvious that drug companies, or doctors, or SOMEONE should be including patient feedback in assessment of long term drug use.
More, more, more!

Trevis Gleason

Friday May 16 2014 09:45

Great piece, Joan! For me most things about living with MS are a "Cost-Benefit" ratio question. Very thought provoking. Cheers


Friday May 16 2014 11:17

Am so comforted reading your blog. I also take my injection on Tuesday evening and my Wednesday is a washout. My weeks are now Tuesday to Tuesday. I was diagnosed last March. I had an incident the previous July, optic neuritis, and the locum neurologist said it was a 'clinically isolated syndrome'. The following march when I went back for a review, I saw the regional neurologist. I thought it was just a check up and was completely floored when he said 'you have M. S. just like that! I was told I would have to go on meds. And since then I have the awful side effects of the drug. I have had two further follow up appointments in the past year but on both occasions have seen two different neurologists!!! Sometimes I feel I had less symptoms altogether before starting the medication!!


Friday May 16 2014 11:23

Thanks, Joan! I'm living outside Ireland at the moment and am on Aubagio, which is a daily tablet that was approved last year. It's great so far - only side effects have been hair thinning, which is improving, and a faster metabolism, which is FABULOUS. Oh, and it increases the effect of alcohol, so you have to limit intake. I'm not sure when (if?) it will be approved in Ireland, but I'd recommend it, and it seems to be working so far.


Friday May 16 2014 14:15

Great piece Joan. It boils down to the individual whether the positives outweigh the negatives as Trevis said cost-benefit ratio


Friday May 16 2014 17:47

Very interested in the black triangle as I am on other meds as well as my MS meds . Do think patient feedback is so important. Love your blog.


Friday May 16 2014 19:25

Glad to read that your new partner is an improvement Joan, pity the owl fella!

anne mc gahon

Friday May 16 2014 19:26

another excellent and thought provoking article - very honest !- Definately would make me as a gp reconsider my patients choice when prescribing any type of medicine - knowledge is power

Joan Jordan

Sunday May 18 2014 09:33

Thanks for the honest and insightful comments! I know a lot of people with MS who ditched the drugs becasue of side effects and I also know a lot of people who have found a drug that works for them. Like Trevis said - it's down to the "Cost-Benefit" ratio.

I will read up on Aubagio, Julie. Hang on in there, Barbara! It's a HUGE shock to get news like that. It's good to talk to people who get you. Thanks for reading!


Tuesday May 20 2014 15:29

Thank you all, great advise first time visiting the site. Joan I am on avonex and have the Monday blues as I take it on Sunday night but I have been taking fish oil and rhodiola rosea and I find it is a great help check it out it may help by the way I paid €40 here in Dublin for it. Got it online for €12 hope this helps somebody.


Tuesday May 20 2014 21:16

Fantastic, helpful article. Having been on Avonex for over 2 years, I still suffer from the flu like symptoms. Less severe than when I first started taking my medication (Wednesdays diff not my best day of the week). I decided on injection on Tuesday night for same reasons as Joan. I suffered lot of hair loss for months afterwards but thankfully that has now stopped. Cheers


Wednesday May 21 2014 16:39

Brilliant piece Joan! It does make you wonder why anyone would want to start treatment, but in my view it's better to have medication with possible side effect than having no treatment at all. Of course, you then play with the possibility of getting worse later on because people didn't want the side effects right now.

Started on Rebif but flu-like symptoms were still there a year and a half after starting interferon, when side effects should only have lasted about three months. Goodbye Rebif, welcome Copaxone and hallelujah... no side effects at all!

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