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Inactive user
Newly Diagnosed

Hi everyone,

 

I was diagnosed with MS on Monday after 2 years of symptoms with spinal lesions, my last MRI showed lesions on the brain also.

 

I have been given literature about treatment but I can't decide. My question is...... is the intra muscular injection a lot more painful then the subcutaneous one?

 

Thanks for reading my post thumbsup

Mushaboom

 

Topics Treatments and therapies
Inactive user

Congrats and comisserations on the dx :-(

 

Great that you're getting DMDs without a fight. I've been told that we don't have pain receptors in muscle so that the intramuscular injection doesn't hurt the whole way in, but I was always too big a wimp to even try (that needle is HUGE!) so Avonex was straight off the list for me! 

 

I went for Copaxone the first time because of the no flu side effects. I was really happy on it (and relapse free) for 3.5 years, but my neuro took me off it when I started relapsing again. It is dead easy to inject and because it's every day, it's easy to get into a routine with it. Plus no flu of course. 

 

When it became very clear that I needed to go back on a DMD (and the new pills still hadn't been approved), I started Rebif. It's 3 times a week subcutaneous. It comes with the Rebismart device which is brilliant for needle phobics - you can inject without even seeing the needle! Unfortunately, Rebif is an interferon, so there are the flu side effects. I've been on it for 3 months now and the effects are finally wearing off to the extent that a couple of paracetamol keeps them in check. Some people are lucky and never get them at all. Some people are unlucky and get them permanently, but I was told that this is usually people who didn't have their dose increased gradually which they tend to do for everyone now. 

 

If you have a look on the msdecisions website you'll find loads of info about the DMDs. Remember, there's no right choice - just go with the one that you think might suit you best. 

 

Good luck :-)

 

Karen x

I have MS

Hi ya Mushaboom,

Congrats & commiserations - cos your dx is both...

The ms decisions website is the place to look for more info on the different dmd's available. Make sure that whatever decision you end up making is yours. The possible side effects of each one varies for everyone just like any other drug but I have to say when I was originally trying to decide which one to go for, I avoided the one which is injected into the muscle.....the mere thought of it scared the living daylights out of me! That said there are many others who have opted for it - it may be worthwhile posting on Everyday Living as you may get a better response about it.

I eventually went for Betaferon (an interferon) but I was taken off that a few months back as it wasn't helping me. I'm due to see the neuro again this Friday.

Ultimately the choice is yours whatever you decide. Personally I want every chance possible so I'm hoping to start on another dmd soon.

Remember that dmd's are not designed to 'make you feel better' as such - they're a long term treatment. For symptomatic problems there are lots of meds available so don't suffer in silence.

 

Good luck

Debbie xx

 

 

 

Inactive user

Thanks Karen and Debbie,

 

I have to say the length of the Avonex needle did wig me out a bit but my nurse said the needle is very fine now and I'm wondering if once a week is worth it. I'm finding it so hard to decide!!

 

I will post in everyday also,

Thanks again

Rach

I have MS

Mushaboom wrote:

Thanks Karen and Debbie,

 

I have to say the length of the Avonex needle did wig me out a bit but my nurse said the needle is very fine now and I'm wondering if once a week is worth it. I'm finding it so hard to decide!!

 

I will post in everyday also,

Thanks again

Rach

 

Hi ya Rach,

In my opinion it's worth trying. Have you looked on the ms decisions website? Apart from having info on the dmd's it also has a questionnaire....well sort of a questionnaire anyway. Basically it asks you questions (anonymously) with options for things such as frequency of the jabs, whether you'd prefer one that's already pre-mixed etc etc. It then gives you a table of pro's & con's of each one. It really helps in deciding which one may be better for you - with your lifestyle.

The way I originally decided was that I didn't want to have to do it everyday but on the other hand I was worried I'd forget jto do the jab just once a week. That knocked off a couple of options straight away. Then I went from there.

For the most part the dmd's are pretty much the same except the frequency, whether they're an interferons and how they're stored. You may not think so now but 'doing the deed' does become part of your routine pretty quickly although it all seems very daunting now I know.

Why don't you leave it for a couple of days then go back and have another look. Weed out the ones you're definitely not up for then take it from there. It's the sort of decision that most people will never have to make and yes it is tough but the dmd's may make all the difference to you and there's nothing stopping you from trying one for a while and seeing how you get on.

At my last appt with my neuro in June it was decided to give me a 4 month break from them completely and to think about trying either avonex or copaxone next time round. So I'm in a similar position to you at the moment really. I see mr neuro tomorrow so I'll keep you posted.

Don't feel rushed into a decision, take your time and do what's right for you!

 

Debbie xx

 

Inactive user

Hi Debbie,

 

I had a look at that website, it's very helpful thank you.

I watched the injection videos and wow did I feel weak lol. Auto inject all the way!! In fact that smart rebif looks interesting, very un-needle like.  I've tightened my decison to Avonex or Rebif now at least, will talk to my MS Nurse about them.

Thanks again for the advice, it's sucha relief to be able to talk to people who know what I'm going through, none of my family or friends have it so it's very hard for them to wrap their heads around it too.

Rach x

Inactive user

Double post, sorry blush

Inactive user

Hi Rach.

 

The Rebismart is very cool. It's much more fiddly than doing manual injections, but you don't even have to see the needle using the Rebismart! 

 

I think the videos on the msdecisions site are good, but over the top as far as how much prep etc is needed to inject. It's a lot easier than it looks on them.

 

Karen x

Inactive user

Yes its gadgetyness is calling to me alright lol.

 

Thanks Karen x

Hi all

Just a short post for now to say I was diagnosed (I think) with MS on Monday (11/1/21) having had Optic Neuritis about 12 months or so ago.  Covid delayed my Neurology appointment and MRI unfortunately.

I’m being referred to the Neurology Inflammation Clinic and wondering whether that’s what will trigger the formal diagnosis (the letter I’ve received hasn’t specifically said the words MS but I appear to have a lot of demyelination).

Doing ok at the moment as I’d been expecting this outcome for over a year.  Reading the letter from the Neurologist to me / my GP is a bit mind boggling; all the medical jargon! Looking forward to being able to ask about what this all means.

Just to say sorry that it took so long, and hope you are OK it must be hard to take in the diagnosis. 

I think you posted on an old post so it might not get answered - if you start your own post?