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ms team for dmd's

ok i saw the neuro today to ask him for steroid tablets as i cant have them via iv as i completely freak out n have bad panic attacks coz its a needle, he said that as my legs are getting worse and not getting better at all then he does’nt see that steroids will do anything to help, was diagnosed last march with ms, was showing symptoms for 9 yrs before that, now i feel like its getting much worse, he said he’s now reffering me to the ms team who will put me on dmd’s instead, are these dmd’s all injectable? or are some tablets? i cant have anything in injection form at all, please tell me there are tablets out there…thanks vicki

Hi Vicki In my (very) limited knowledge, I think they are all injectable. But I’m on Rebif and you don’t even see the needle with the rebismart. Xx

ok, im stuck then if they are all injectable, mums on insulin n has a injectable pen n im scared witless when she gets that out, so now she warns me in advance so i can leave the room till shes finished

Hiya Vicki

I’m sure there are tablet DMD’s around now, or they are in trails, which you may be offered so please don’t panic too much just yet. I know that Gilenya/Fingolimod is a tablet DMD that has been approved for used in this country so ask about that one.

Sue

x

I haven’t got a needle phobia so easy for me to say but it really is very simple. The rebismart just looks like a mobile phone which you hold against your skin. Xx

ok thankyou, ill ask the ms team when i see them whats out there, they show me a needle and ill have a new trick…flying out the window hahaha

Tysabri does involve a needle, but only once a month. It is the most effective dmd. Fingolimod is slightly less effective and more expensive. Our health authority won’t fund it presently - I don’t know whether this is true elsewhere.

My neuro said that the tablet DMD was only being prescribed for patients where the injectable forms had stopped working for them. However given your phobia of needles yours may make an exception. It’s always worth asking eh?

Tracey

i hope so, if theres only injectable stuff out there then someone will have to inject me themselves coz im buggered if im going to voluntarily n willingly shove a needle in myself

I use an Autoject for my Betaferon so I don’t see the needle. I don’t like injecting but I do it voluntarily and willingly because I hate relapses more. Reducing relapses is more important to me.

Val

It might be one way to cure your phobia…I’m rubbish with needles too but after having my last relapse which has left damage ill do anything to prevent more relapses! X

it mite be ok for you, but when a fear of something is that bad then it doesnt matter if it will do good or not, the fear of it takes over, i cant help it or stop it

ive tried alsorts over the years to get over the fear of needles includint trying to handle mums insulin pen, but every time it gets worse n worse n the panic attacks get much more worse aswell

How about some hypnotherapy hun? I’d thought about that a while ago as I have never took my little boy for jabs because of my phobia however to be honest then had a relapse so that took priority. I’m dreading going on them but if its all that’s available to help I have to do it for my family and myself. I will be querying oral form however I do believe that these are not offered without the other ones being tried but like someone said you may be lucky due to the phobia x

i tried hypnotherapy years ago, it worked for a couple of months then it just seemed to go bang n i was back where i started, ive tried meditating, taking painkillers that space me out but as soon as i see a needle im no longer spaced n scared to hell n on comes a panic attack n thats just when they start to go near me with a needle, im worse if they manage to get one in me for a blood test, its stupid that im scared of something so tiny, mum cant understand it as id tell her id rather walk around in a thunderstorm holding a 10ft metal pole than go near a needle

Phobias aren’t something anyone understands… But maybe give the hypnotherapy another go…if it works for a few months might get you used to it and then the phobia might pass in a way. Just thinking of ideas as its a hard one. Sorry I can’t be of more help. X

thanks alot, ill give it another go, when it wears off again ill just go back n get it done again, do it that way

Think itll be worth it and you might find just one will do the trick as you’ll be hands on with injections whereas you weren’t last time you had it. Good luck hun…worth it to reduce relapse x

Actually, the people who understand phobias are Clinical Psychologists. If you can get to see a good one, you will find a range of tecniques to reduce that phobia. The trick is getting to see one without paying for private treatment.

I hate needles. I really hate needles. At one time, the blood tests were so regular that I have scar tissue inside my left elbow. Did I say that I really really hate needles?

When I was offered a DMD I opted for Copaxone because it meant a daily injection. Partly this is easy to build into a daily routine (as others have found), and partly because I knew that it would be easier to face up to.
I use the Autoject tool provided (but others prefer to just use the syringe) just because I do not have to look at the needle. Blood samples, flu jabs, anything like that, I do not want to see the needle. So I use a watch. It has a sweep second hand. I get the Autoject in the right place, look at the second hand, and when it goes past a number I press the release - then it is just a tiny little prick (no, not a politician) and it is all over. With Copaxone there is a slight “bee sting” effect afterward - and that means that it is all over. I do not see the needle until it goes into the bin, and I do not have to look at it even when doing that.
The trick here is that I am not thinking about the needle, but about the hand on the watch. It also tells me when it is time to remove the Autoject (not, please note, the needle).

If hypnotherapy can get you to start injecting great. A hypnotherapist who also does counselling would be even better. But a fear of needles really is something that you can get round if you want to.

Geoff

That’s very usefull info Geoff and is also one reason why I’m considering copaxone…thought if I can get into a routine of doing that daily needle phobia may be better of a fashion! X