Bit nervous now

[ConfirmedRachel]

So,

My Tecfidera finally arrives tomorrow morning to be started on Monday morning.

With the ON I had in Jan/Feb pretty much sorted and mainly ridiculous brain to contend with I'm not exactly feeling ill, just very nervous.

When you guys started your first DMD did you question in your head if you really had MS again? What if it was a mistake? I know it's not wrong cos the scans and symptoms were pretty flipping obvious when I was diagnosed.

I tried to stock up on a few over the counter meds today to combat any possible side effects like nausea, stomach cramps, diarrhoea, flushing etc - just in case. Pharmacist said he wouldn't sell the low dose 'baby' aspirin without a prescription as they aren't registered/licenced to sell for MS use - really!? 75mg aspirin?! I said it was only if it happened and I was told to get some, but nope.

Anything else anyone would recommend? Junior Disprin perhaps which I can get in the supermarket!?

I'm not too desperado or anything, just a little nervy.
Nx

[bbassel]

For me the side effects didn't really become an issue. I was just happy trying to eliminate all the chaos in my life!

I had four relapses in the first year that permanently disabled me. I was on copaxone for that year and finally was switched to tysabri.

I have been relapse free now since and it has been a godsend! The onlly side effect was extreme fatigue for a week after my monthly infusion.

It will change your life in a positive way to be on something. We are all rooting for you!

All the best,
Barb

[HVAC]

Taking the first DMD is making it real. I was not so much afraid of giving myself an injection as admitting this is real. I really have MS. I use to wake and say that was a really bad dream then I would remember I really had MS and it was not a dream. Finally I realized MS was not front and center. It was still there. I even went for a second opinion. MS used to be front and center. Now I do not think about it. The other day I realized I forgot I have a port in my chest for cancer IVs.Once it becomes routine it is better.

The first year of MS is hard. I call it the roller coaster. You have highs and lows. New symptoms come and you do not know what to do. You feel proud of dealing so well with MS. You have a bad patch and worry that this is the new normal. Adaptability is the key to MS. It is unfair we have an unpredictable disease.My biggest piece of advice is to not worry about all the symptoms. Very few people get them all. I had a lady with MS tell me just wait until this happens and that happens. Everyone is different. Not everyone has the side effects.

Alex

[immisceo]

You may find you question if you have MS periodically for years to come. For me, five years in, I remind myself that I was vetted by a pharmaceutical company's screening process for the drug study I'm on. That's about as iron-clad a diagnosis as it gets! And I also realise, if I'm able to question it, it's a good thing! That means my MS is not effecting my daily life enough to seem obvious to me.

I agree with Kyle. They have to list all the symptoms that showed up when the drug was trialled. They don't have to establish that it was a direct result of the drug itself. It could have been coincidence or happened in a very low number of people. It's easy to freak out by those lists, but it comes down to the cost/benefit ratio. And these days, if a drug truly isn't a good fit for someone, they have other options that have a different mode of action and thus a different side-effect profile.

Starting a DMD does make things seem more real. There may be moments when you still question. These are some of the things that surround chronic illness. Your developing this new relationship with something that's going to be with you forever, and that takes more mental gymnastics than gets acknowledged sometimes! But your awareness of such things within yourself will hold you in good stead.

[ConfirmedRachel]

Appreciate your thoughts and prayers Karen.

Nx

[ConfirmedRachel]

Thanks Kyle
Fingers crossed.

Nx

[4happygnomes]

I don't have any experience to offer, I'm still in limbo.  But I'll be thinking of you on Monday and pray that it all goes well and the side effects are few, or none at all!

Karen

[kwarendorf]

THe power of suggestion can be powerful. This is certainly true when it comes to meds and side effects. It natural to assume that if there are 15 side effects for a DMD you're going to experience at least 13 of them. That's why I don't spent too much time reading side effects profiles :-)

I have been on two DMD's, first Tysabri and now Rituxan. I have not had a single side effect of any variety form either one.

As to DMD's cementing things, I agree. For me Tysabri was my first. That meant going to a infusion center and getting hooked up to some mystery IV. It certainly brough home the notion that things had changed :-)

Kyle

[ConfirmedRachel]

Thanks all, you are all saying what I would say to myself if I wasn't me - if that makes any sense lol.

It's great to have a bunch of friends here rooting for you and understanding your mind in a way other friends & family can't really.  I appreciate this forum/group so much.

:-)

[Artanis12]

You're going to be fine, regardless of how you react to the med.  Remember, nausea and gastro upsets are just a symptom - if they're too bad you can always try something else.  Switching meds because of side-effects happens with all meds, this is no different.

That said, if the nausea is bothersome, call your doctor and ask for a script for something.  Mine gave me Zofran and that stuff was a godsend.  Once I got past the first 5 weeks, the only thing I've had to contend with has been the flushing, and that is pretty random now - and it is a bit distracting but not painful, kind of like a 30 minute prickly sunburn, that's about it.  So I encourage you to tough it out and give it a good shot before you give up on it - I know I was almost ready at one point, but once I got an effective nausea med, I was OK from there until it all subsided.

Oh, and about the baby aspirin?  Get some adult asprin - uncoated 325s - a pill cutter, and go to town.  More than one way to skin a cat, right?  Seriously though, you may find it's not annoying enough to even mess with.

Wishing you no/low side-effects and that Tec is ultimately effective for you! :)

Karen  

[Corriel]

Hi missy! I felt like my whole world was tilted when the day came to start my first DMD, it seemed surreal and real all at the same time.

Like ess said, try not to overthink but I know it's comforting to be prepared to do battle. Too bad about the baby aspirin but you may not need it. I have had moderate success with applesauce for flushing. It came highly recommended from the Facebook support group for Tec that I am a member of.

You are officially ready to begin so try to relax and remember it is just another step in your journey. Keep us posted. Sending hugs and positive thoughts your way.

I hope you had a fab holiday!

Corrie

[essdipity]

Hi! Try not to overthink this too much. Yes, it does make things more than real when confronted with the actual DMD, and a 'what have I done?' feeling is pretty common. But try to counter that with a 'here goes nothing' mindset. Chances are good that you won't need many of these remedies, and maybe you'll need none. Or you'll have to tinker with a couple of them for the short term only.

Worst case scenario is that you can't adjust to the med, and if that should happen, well, there are lots of others out there. That's a relatively new luxury with MS. So try to chill, and remember that you're being active in combating the MS beast. Ultimately you and all of us will slay him. Hang in there.

Hugs,
ess