Met MS nurse for the first time today and discussed DMTs. Still not decided between avonex, Copaxone or rebif. Not much will happen regarding moving things forward until nearer the end of Feb as she’s on holiday. We go on holiday at the end of April. I’m not sure whether to delay starting the drugs until after our holiday as don’t want any side effects to effect our trip.
What do you think?
Hello., Just my opinion here and I will probably get told off about this…but if it was me I would start after my holiday. There was a really helpful Facebook group for Tecfidera (which I take) which got taken down a few months ago - I have no idea why, but it was such a shame.It just disappeared. Whenever anyone on there asked the same question as you - should they wait until after their holiday to start the Tec - there were some people who really had a go and told them to just get on with it and start now. I’m afraid I couldn’t agree with them.
Louise
Personally, I would have wanted to start mine the previous week!!!
I don’t think that’s good enough and I would be asking my ms nurse to start things moving before her holiday. As for you waiting until after April(!), well that will be your decision. However, time is brain in my books. The next relapse might be the one that leaves you with something that you won’t ever recover from, be it less mobility, manual dexterity, speech, whatever. If you begin treatment asap, any side affects will have settled by end of April. I know what I’d be doing.
Thanks Lou, didn’t realise that this question would open a can of worms. I think, on balance, I’m probably going to delay until after we are back. However, this might depend on how quickly the drugs are sorted. Nothing will happen until at least March anyway and I don’t want to risk the flu symptoms spoiling our holiday if I start too close to us going. I was given the option of watching and waiting but will start the DMT it’s just when. I know I’d possibly be taking a slight risk if I delay though.
Thanks Poppy, I totally get what you’re saying too. Thing is I’ve not yet decided which one to go for. That’s probably delaying things too. Keep swinging one way and then the other about which to go for.
I suppose you’ve checked out this link, on the top of the page?
It might help a bit?
Thanks Poppy, I’ve read so much that I think my head is going to explode. Perhaps I’m overthinking it though. If I could make a decision soon I probably could push her to get it actioned asap.
If circumstances make it impossible to start before you get back from holiday at the end of April, I would, in your shoes, want to make sure that everything was tee-ed up to start just as soon as possible thereafter. These things can take more time that you would think to set up, and the more planning ahead that you can do, the better. It is amazing how the weeks can drag by, waiting for this or that - particularly at the set-up stage.
Alison
the sooner the better.
always.
Well, Smurf, I was told I qualified for a DMD and I dithered.
In the six months before I made the decision, I had three relapses.
I opted for Copaxone - no flu-like effects, and the once daily injection was the easiest to build into a daily routine.
If I had not dithered, would I still be RRMS? Who knows? But I cannot turn the clock back.
Start as soon as you can.
Geoff
Thanks everyone, I know you’re right. I’ve contacted the MS nurse to ask if she’s capacity to action it before her holiday if I mange to choose which one. Then I’ll see when the drugs actually get here before making a definite decision. My head says start asap to be honest.
Ok I’ve spoken to my MS nurse this morning and am signing the forms tomorrow. I’ll wait and see how long it all takes now but at least I’ve got the ball rolling. Going for rebif. Not 100% sure if it’s right choice but got to start something and can swap it no good.
But Geoff,
You know that taking or not taking a DMD is not going to affect whether you transition from RR to SP, so taking the drug a bit sooner may have affected whether you had such bad relapses; but it wouldn’t ultimately have changed the course of the disease.
Although I wholeheartedly agree with you about starting asap. After all, April is 3 months away. In that time damage can be done which might have been mitigated by taking a DMD sooner.
Sue
Best of luck Smurf !! Really hope it all goes well for you… I was terrified before I started my meds now I can’t remember before it was my routine let us know how you get on …
Good for you. It is good to get the ball rolling. The sooner it becomes part of your routine, the sooner you can get on with your life without spending precious time worrying about DMDs.
Good luck.
Alison
Thank you, just more waiting now. Quite nervous now I’ve decided and signed paperwork. Anyone got any idea his long this bit takes?
Hey Smurf,
A late joiner here!
Can I ask were you offered tecfidera??? Tablet, just as effective, if not more vs injections. I’ve done both and much prefer taking a tablet twice a day.
My side effects were minimal and manageable
good luck
min xx
Hi, no not eligible for tec as currently CIS. Did ask MS nurse about it though.
Bloody rules. Rebif is good too
Min xx
Thanks Min, took my ages to choose between avonex, copaxone and rebif. Went for rebif in the end as didn’t fancy IM thigh once a week sounded good just guessed flu side effects could be worse. Didn’t like the sound of the risk of IPIR with copaxone. TBH I was looking really hard for any difference between the 3. Feel reassured that I can switch if don’t get on with rebif. Just wondering how long this next bit will be.