Start Rebif tomorrow!

[zoefromsussex]

I've got the nurse coming out tomorrow to take me through my first Rebif injection but this morning I've woken up with cold sores covering almost my entire lower lip....is it still ok to go ahead with starting rebif or should I put it off til I'm less run down? sorry if this is a silly question but I want to get off to a good start being as I have waited so long to start a dmd!

[zoefromsussex]

No, I have only ever had a couple of cold sores and to be fair I wouldn't have described this latest thing as a proper cold sore, more like blisters. I get a circular patch filled with tiny blisters on the back of my thigh very occasionally and apparently that's from where I've had shingles and it can flare up sometimes. I seem to get lots of weird stuff like that! Anyway, had a good sleep last night and have woken feeling way less wobbly and the mouth numbness has nearly gone!

[Corriel]

I'm glad you got an answer! Do you often get cold sores? Maybe last week was a sign of an attack coming on or something? I am not a big fan of coincidences and that one seems too timely. Of course, I have no idea if cold sores can be related to that or not. Lol.

[zoefromsussex]

The issue for me is the whole thing of dmd's because I just struggle with getting my head around the whole thing of the uncertainty of ms and we just don't know if dmd's are helping because of course we don't know whether we'd be having relapses without! My nurse said today that dmd's are the best hope I have given the active nature of my ms!

[immisceo]

Great that you were able to get some concrete advice about this! Make sure you keep them in the loop if anything gets to the point that you're temped to skip injections. I know that with Avonex it's often recommended to take paracetomol a bit before injecting for the first six few months as it's so common to have flu-like symptoms.

Hopefully this modification to your injection regimen will do the trick. If it helps you adhere to a medication, I wouldn't consider it 'unecessary', more like an understandable and appropriate means to an end! I hope this bumpy start smoothes out for you soon, Zoe.

[zoefromsussex]

Spoke to my ms nurse and she was great. She's convinced me to carry on and says what I'm experiencing is not an adverse reaction, it's a common reaction to injecting a new drug. Basically I didn't try paracetamol because I hate taking drugs unnecessarily. Anyway, she said that takuing paracetamo would ease my headache (which it has) and it might be a rise in my temp causing some of the other sx. However, it would seem the numb mouth is a relapse and she said its possibly been brought on by stressing out about starting a dmd  etc. I'm just riding it out unless I get a probem with swallowing but I'm ok with liquids & soft food so I'll survive! :-D

[zoefromsussex]

Thanks guys, I've emailed them both but I'm wondering now if I'm actually having a relapse rather than a reaction aas today's delights include a numb tongue, numb bottom lip and I'm more tired & wobbly than usual. I'm wondering if the rebif triggered it or whether I had some kind of viral infection as on the day I started the shots I'd woken up with cold sores so I guess that could be a factor. Is the numb tongue thing a common ms symptom do you know? It's not so numb that I can't feel it at all but numb as in if I poke my tongue or lip with my nail it has reduced sensation. I'm hoping  won't start dribbling when I leave for the school run shortly! lol

[immisceo]

So sorry to hear that Zoe! Have you contacted your MS nurse or the rebif nurse? They may be able to give you a much better idea of what's 'normal' (though by no means fun) for a new drug and what's an unacceptable turn of events.

As I'm sure you know, Copaxone (glatiramer acetate) versus the other injectables (all interferons) are different drugs entirely and work in different ways, so I'm unsure what the chances are of a similar reaction (absolutely not saying it's impossible, rather it's less likely than say if you'd switched from Avonex to Rebif).

I'd speak to the professionals on this one for sure. Try not to get too disheartened. Remember, there are three orals out now that may provide more options (Aubagio, Gilenya, Tecfidera).

[Corriel]

I'm so sorry to hear you're having trouble. I was hoping you would have an easier time with Rebif. Can you call your doctor or neuro?

I have read some people can't take the "regular"  meds without a lot of problems. It's possible you are one of those people. I remember that there were other meds including the newer one Tecfidera.

Hugs,
Corrie

[zoefromsussex]

Ahhhhh...I could cry! I've had 2 shots of the mega-low dose of rebif and all sorts have flared up. I'm shattered, have had a niggling headache since the first shot and I have numb lips/tongue and weak, shaky legs, so much so that I couldn't exercise yesterday or today which has annoyed me. I'm about to do the next shot but really don't want to as I'm convinced these new sx are linked to the drug. How can it be that I reacted to copaxone and now the rebif? Is this even possible?!

[MsmsinFl]

I've been on Rebif 22mcg for over 3 years.  Never missed a dose.

Like you, I had history of depression, plus I also have thyroid issues.
I also respond strongly to most meds, and currently take reduced doses of all my meds.

I've had no relapses since starting Rebif, and would not consider going up to a full 44mcg as long as I'm doing well at 22mcg.

I've had a few "morning-after" headaches, but nothing like "flu-like" symptoms, which I had feared.

I looked at the Rebif data re 44mcg vs 22mcg doage, and for me, the relatively small increase in efficacy at the higher dose was not worth the potential downside for ME.  BUT that was just my personal conclusion, and my neuro was fine with staying at 22mcg..

Don't be afraid to ask your neuro about dosages etc.  In the end, you and he/she need to work together to decide what works best for you.

If you have more questions, just ask.  This forum  is a great resource for MS-ers!

[sllowe]

Not sure how this post will look, I'm having problems w/the site. I was on Rebif for 5 years faithful. Haven't been so compliant these days. I need to get my  head out my you-know-what and get back on track. I agree w/the nurse that you'll likely not notice the titration - it really is a small dose, and meant to gradually enter your system. I went to back to school night immediately after, and didn't even notice a thing.

Can you believe the morning after I typed that message I got a darn cold sore on my lip! Dang those buggers are catchy! Call MD doc for that Denavir! Mine is almost gone already, and it stops that spread.

Wanna hear how you made out :)
-shell

[immisceo]

Delighted it went well, Zoe. Smart move with the titration schedule! Also glad to hear you got a good nurse too. It can really make a situation seem instantly less daunting!

I know myself that when I had to take a month off of treatment I felt so much better getting back on. Even if the benefits aren't felt directly or instantly, it just felt so good to know I was back to doing what I could to be proactive against this. Hoping this one is the perfect fit for you!

[zoefromsussex]

Thanks! Hope you do well too

[Corriel]

That's awesome news! Good for you. :-)

[zoefromsussex]

Well I did my first injection and it was absolutely fine! As I mentioned though I am starting on just 4mcgs (half the lowest dose) as my nurse wants to increase the dose gradually. I'll then go on to 11mcgs (ie half of the next dose in the titration pack) and then I start the 22mcgs dose on 26th June and then we'll see how I'm tolerating it particularly with depression and then they might put me on the max dose of 44mcgs. I have got a bit of a headache and feel a bit groggy but I think that's more to do with my sleep problem's than the Rebif! Anyway, the nurse was great and like she said, you can only try these things and with ms it's not like you have a whole load of better options other than the dmd's. We shall see!

[Corriel]

I will definitely let you know how I make out. :) I'm a little concerned because I also have a history of depression, but they are starting me off on the 44 mcg dose, so I'm not sure how I will react to the max amount right off the bat.  

[zoefromsussex]

Thanks Shell! How long have you used Rebif? I'm hoping the lower dose will mean I miss out on any of the flu like side effects...the nurse tells me that I'd have to be super sensitive to get a problem from the tiny dose I'm getting at first & I hope she's right!

I've now got six sores on my lips and the top lip is starting to tingle/burn but I have been worrying about starting dmd's and its stressful at home with problem's with my oldest child so I expect that's caused the sores.

I'll definitely report back tomorrow after my injection!

Zoe

[sllowe]

Hi Zoe! Wishing you all the best w/the Rebif. I thoroughly believe it halted my disease activity.

No problems w/the cold sore :( They sure rot. Since I've used this cream called Denavir (prescription med), I rarely get them anymore.

Good for you to go for it! Let us know how you make out. I think you'll find the injections very manageable.
-shell

[zoefromsussex]

Ah thanks! I did wonder as I want tomorrow to go as smoothly as possible! I started copaone last year but had to stop as I reacted badly to it. I will be starting on half of the min dose (I think most ppl start on 8mg but I'm starting with 4) and will probably stay on 22 as my max dosage because I have a history of depression and past problems with stuff like anaemia etc. They said they might increase it up to 44 if I am doing well on the initial injections. I'm still not 100% about starting a dmd but I don't have anything else as back up apart from hope so I'm going for it! I will let you know tomorrow how it goes and please will you do the same? It'll be great to be in touch with somebody just starting rebif. All the best, Zoe

[Corriel]

Hi there! I dont't think the cold sores will be an issue. I start my Rebif on June 3 and I had asked the support program through the drug company if there were days that I shouldn't take it, for example when I have a fever. My understanding is that the drug does not lower our immune system. Good luck and congrats on starting treatment! Let us know how you make out.