Forum

Welcome to the wonderful world of MS!

I was diagnosed with RRMS in February after bouts of optic neuritis and numb feet last year, and possibly some other issues that had happened since 2012 which may have been early relapses. The neurologist said that the MRI scans had showed lesions commensurate with MS rather than Neuro-Myelitis Optica which up until that time had been a possibility. I had been taking cortico-steroids since Christmas in an attempt to calm my system down, which it did successfully. After a couple of months on it, I got the feeling back in my feet, and I was signed off by the ophtalmologist last week.

I was offered the choice of Rebif or Tecfidera as DMT. I’m aware that there is a school of thought that suggests hitting MS early with the hardest drug, but there is also quite a bit of data available that also indicates Rebif being effective over the long term if started early.

The MS nurse visited last Thursday to get me set up on the titration regime, but having read the manuals and watched some videos, I was fairly confident in delaying my first shot until the following Monday. By doing this, I can keep to a schedule that suits me. So anyway Monday evening came. I took a couple of paracetamol tablets at 9-30pm as a pre-emptive strike, injected at 10-15, and went to bed at 11-00. I woke up at my usual 6-30 am, not feeling any worse for the experience. I shall take the tablets all this week but leave them off for the second week and see how I go. I’ll start them again for the third week when I increase the dose, and leave them off for the fourth if it seems OK. I’ll start them again for the first week of the full dose.

I’ve got the cool pack travelling kit and am awaiting a travelling sharps bin to be delivered tomorrow. Off on a short holiday next week, so I’ll see how I can adapt my injection routine to not being at home. I try and keep positive by thinking that I have to inject 3 times a week. Diabetics may have to do it multiple times a day!

Hi Ian,

I just wanted to say that I found this post very useful in terms of decision-making. I am waiting to hear which drugs I will be able to choose from so I am trying to gather my thoughts in that respect.

I hope your holiday is good and it sounds like you’re being very organised in terms of your injections so hopefully you won’t have a problem carrying on whilst away,

Libby

Ian,

That’s the idea, go on holiday and stay positive. Have fun.

Jen x

Well, a month has passed and after the 4 week titration, I am now on the full 44 mcg dose. So far, it has been largely uneventful. I have been away for a short break to trial run the logistics of travelling with the Rebismart and the vials of unused medication. So what have I learned in this time?

Obviously a fridge is required if going away for more than a week. Not only for storing the unused Rebif, but also ideally a freezer compartment for the gel cold pack if you use one. After trying the injection without the cold pack it did sting a bit. Answer - Nexcare Hot/Colds, a chemical cold pack similar to those used in sports injuries. Crush the pack and it goes cold for about 30 minutes. I bought mine from the local pharmacy, but they are available from Amazon.

Don’t take the initial absence of flu like symptoms as indication of never getting them. Mine only really kicked back during the third week of titration. I had got a bit lax in taking my paracetamols, but as I lay awake at 1-00am shivering with stiff legs and a feeling that all my teeth were loose, I made a mental note to ensure that I replenished my stock after taking a couple. The symptoms went after about an hour of taking them, so I went back to bed, and have made sure that I continue to take them, at least for the short term.

Other than that, it has not been too much of a trial. 1 month blood samples have been taken, and I have an appointment with the MS nurse in a couple of weeks to review. In addition, I have been invited to a one day “Getting to Grips with MS” workshop / presentation session held by the local MS Society branch for people who have been newly diagnosed. My neurologist with be speaking there too.

All in all, the regime is manageable, so…

Onwards and Upwards…!

Ian

well done Ian

only people who have been through it themselves can understand.

onwards and upwards

carole x