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Medication and MS

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Thursday March 03 2016 11:08 AM

In this week’s MS & Me blog, Niamh takes a look at why she decided to go on medication to manage her MS. 

In reality, it wasn’t a deeply-considered decision that I made. The option to not take any medication wasn’t really presented to me. I was under the impression from my neurologist and GP that taking medication was the best way to manage my symptoms. I figured those guys had more experience than I had, and as they were keen to get me up and running on some form of treatment, I went with their advice.

Deciding on which medication is difficult. Let’s face it, not many of us have a medical dictionary to hand most of the time, and I was given a lot of information and bumf about the choices available to me. The information came on DVDs, in booklet and leaflets, and I was advised to “have a read over that, and let us know which one you want to go for”. Now, there was probably a bit more to it than that, but in those first few days I was busy trying to get my head around the fact I even had MS, never mind trying to learn the difference between beta interferons, infusions and Glatiramer acetates. Heck, I still don’t know the difference- I’ve just had to read the box from my injections to check the spellings!

Looking back, I am not sure if this approach worked for me. I didn’t ask many questions, mainly because I didn’t know what I should be asking, and I think I would have benefitted from a bit more time chatting to someone who knew the ins and outs of all the different types of drugs. I loaded up my bag with all the bits and pieces and trotted home to try to decipher them. I think that a second appointment, akin to a counselling session, would be helpful to go through things again and to make sure patients know the options fully.

I did my best to get through the literature, and to decide on a medication. I admit, my choice was based a lot on the number of injections I’d need to take a week. I figured that with my limited medical knowledge, this was as good a reason as any to pick one!

I didn’t get bogged down in what the drugs actually contained- I just wanted to take something easily and for it to stop me getting sicker. This tends to be the way I approach most things- I don’t really question a lot of the whys and wherefores, I depend on the professionals to do that.  

However, as time has gone on I’ve started taking more responsibility in researching how to manage my MS best for me. Diet and exercise plays a big role in that, but I’ve never considered not taking the medication as well. I see it as, the medication is my main defence and whatever else I can do to help it, is a bonus.

Settling on a medication took a while. I started on Rebif first, but it wasn’t for me. The side effects were hard on me and I ended up having an allergic reaction. I then moved on to Copaxone, which was a daily injection, but I’ve recently changed to the 3-times a week dosage. People wince when I tell them that I inject daily, but most days I don’t even feel it. It becomes routine, and is like cleaning my teeth. 

I am managing well on Copaxone, and have no plans to change to another drug. If my neurologist recommended a change, I’d definitely consider his advice carefully, but nowadays I think I’d spend more time doing some research myself, and ask a few more questions. 

Author: Niamh McCarron

Tags: medication, ms, multiplesclerosis, healthprofessional

Comments

Emma

Thursday March 03 2016 11:58

Wow, I could have written this word for word it resonates so much. Were you ever offered an oral tablet as treatment, such as Tecfidera or Gilenya? But good to hear you are doing well :) My advice to anyone diagnosed it to ask questions, keep asking them and educate yourself through your own research as much as possible!

Sandra

Thursday March 03 2016 13:15

I also agree with every word! I started on Tecfidera but after a week and a half had to stop as it made me incredibly sick. I wasn't offered it as such but asked for it as I thought tablets would be easier. When I had to change I was offered 5 different injection options. To be honest I only made a decision on one of them thanks to a few friends with MS that I met through an MS physio group. Their knowledge and experience helped me hugely. Without that, a second appointment like you suggest would have been helpful as its hard to get your head around all the options.

Declan

Thursday March 03 2016 13:21

I also tend to be led by the professional Niamh but I do research a bit. I also consider meds the first line and everything else is extra. Great blog.

Joan Jordan

Thursday March 03 2016 14:21

Same! Well captured Niamh! Like you, I believe that "medication is my main defence". Love the second appointment idea.

Shelley

Friday March 04 2016 00:07

I chose Copaxone because I liked the fact that it has a neuroprotective action plus other than the daily injection there really are no side effects unlike the beta interferons. Not trying to do whatever I could to improve my prognosis was never an option for me.

Theresa

Friday March 04 2016 13:41

I have Campath once a year

Cheryl

Friday March 04 2016 15:51

Great blog! I am a Neuro Nurse and had little experience with MS, so when I was diagnosed I was shocked into denial. I did a small amount of research at first and little networking because denial and fear that I would pick up the various symptoms terrified me. I wanted to stay positive and maintain my state of denial. Looking back I now know I did not realize I was in denial. I did not want MS and went for second opinion with a neurologist college. Although my diagnosis was an answer to all the weird and varied symptoms I had been experiencing for years.
I agree with your blog that a Consulting session would help ease the shock of the diagnosis, but I would not have been receptive at that time because it took me months to move into acceptance of my diagnosis. I never respond or comment to blogs but this was very well written. Great job!

Julie

Sunday March 06 2016 12:40

I'm curious: are people offered Aubagio in Ireland? I take it and find it great, but I've never tried anything else. I was diagnosed in Brussels, where my neurologist spent time with me talking me through the condition, then brought me back in a few days later and spent 90 minutes with me, talking me through all the medications and also the option of no medication and a healthy lifestyle. He kept stopping and asking me if I had questions, and encouraged me to email him if I thought of questions afterwards. His main emphasis was on getting me running again (we're both runners) and making me believe a normal life was possible. I'll be forever grateful to him for his compassion and enthusiasm about developments in MS management.

Declan

Monday March 07 2016 09:26

Hi Julie, your neuro sounds fantastic. If only there were more like him

Nicki

Thursday March 10 2016 19:34

Wow Julie, you're neurologist sounds brilliant. I wish EVERY option was discussed here but medication seems to be the choice.
After 3yrs on Rebif I recently made the decision to stop taking meds and concentrate on diet, excersice and healthy lifestyle as my treatment. I have been researching and considering it for a long time and I'm really happy with my decision.

Niamh McCarron

Thursday March 10 2016 20:38

Hi all, thanks for all your wonderful comments and feedback. It's great to get an insight into your experiences. The more we talk, the more informed we can be.

Richard

Monday March 14 2016 17:54

Hi Richard here,
I am a newbie with MS and was only diagnosed 2 weeks ago, now I think I have decided on an injection which is 2 injections a month with FLS which is Flu Like Symptoms which I was told by my MS nurse I could take neurofen for aches and pains. If anyone has tried it I would love to hear about it.
Thank you Richard

Christina

Monday August 29 2016 13:33

Hi all, I've recently been diagnosed with MS. I'm still not over the shock as it was the last thing I expected. My neuro gave me information on tecfidera but I said no to taking it as the side effect " dropping white blood cells" which may cause the brain disease worried me.. I spoke to my neuro today and he is now sending me information on injections.. My head is spinning since I was diagnosed and I have thought about not taking any treatment at all but from reading your comments, a lot of you wouldn't think twice about not taking your medication... Are the injections easy enough to give yourself? ... If any of you have any advice for me I'd be very happy to hear it...
Thank you Christina

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