MS in all its glory

fergal.b · 21-10-2012 11:57PM

The MS nurse will come out to your house and teach you how to use the auto injector you will get to practice on an orange or fake skin till you are happy to give it a go, you will start off on a small amount of the drug and work your way up, some injectors are basic plastic ones like this

rebif%252520auto%252520injector%25255B4%25255D.png

rebif%252520auto%252520injector%25255B4%25255D.png

The last one we got was a fancy one like a sniper kit :)it even had a little light to shine on the injection site, an ice cube on the site can numb it and leave a red mark to aim for. If you have any problems the MS nurse is always handy to get hold of and willing to help so if you have any questions don't be afraid to ask, we even got our needles changed to a different size as we weren't happy with the ones we got.
Best of luck and don't worry too much about it as it will soon just part of your life like having a cup of tea in the morning with a pinch " It's easy for me to say as I'm the one giving the pinches":D

discobeaker · 22-10-2012 12:22AM

Wow... i could rob a bank with that big silver thingy!!!!

Im sure i will get used to it after awhile. Just the initial thing about sticking a needle into myself aint really appealing (im such a wuss) Awww im sure i will survive

outnumbered82 · 22-10-2012 01:21AM

Fergal that looks very nice my Rebif one looks like a big stamper!!

fergal.b · 22-10-2012 07:02AM

Well it's free to a good home if anyone wants it as the Gilenya seems to be working well with no side affects "Thank GOD"

Worried 27 · 22-10-2012 10:06AM

Fergal.b

Just what to say thanks for posting all the info on the nurse and injections! I'm starting on avonex this Wednesday and the ms nurse is coming I'm so nervous and it has helped me to relax a bit. I hate needles but I guess that's a fear I'm going to have to overcome! ; ) lets hope all goes well! I think I'm so nervous because everything has moved so quick that I'm only having the chance to let it all sink! I really never thought this was a condition I'd ever have to deal with !

coughdrops · 22-10-2012 11:33AM

@discobeaker- I inject with Copaxone every day, using an auto-injector similar to the first one fergal posted. You get used to which areas react better/worse to the injections. My stomach is the best place for me (possibly something to do with the layer of fat on it

). I do legs and bum too, but they are a bit sorer (but manageable- it's more like the skin is irritated).

@fergal- I have serious jagger-envy!! Mine is plastic and looks like it came from a kids doctor set. I am so glad the Gilenya are working, that's great news.

@worried27- it is totally normal to be nervous. The nurses I've met are lovely, and really put me at ease. The first day I had to inject she was with me, I and was sitting there going "just DO it" to myself. Took me ages to suck up the courage and then when I did it, I couldn't get over how not sore it was. Will you have someone with you when you meet nurse? My DH was there and god love him, he nearly fainted. But it was nice to have him!

Worried 27 · 22-10-2012 12:17PM

coughdrops wrote: »

@discobeaker- I inject with Copaxone every day, using an auto-injector similar to the first one fergal posted. You get used to which areas react better/worse to the injections. My stomach is the best place for me (possibly something to do with the layer of fat on it ). I do legs and bum too, but they are a bit sorer (but manageable- it's more like the skin is irritated).

@fergal- I have serious jagger-envy!! Mine is plastic and looks like it came from a kids doctor set. I am so glad the Gilenya are working, that's great news.

@worried27- it is totally normal to be nervous. The nurses I've met are lovely, and really put me at ease. The first day I had to inject she was with me, I and was sitting there going "just DO it" to myself. Took me ages to suck up the courage and then when I did it, I couldn't get over how not sore it was. Will you have someone with you when you meet nurse? My DH was there and god love him, he nearly fainted. But it was nice to have him!

My husband will be with me, he will be injecting me at first because I know I will just chicken out and find some excuse to put it off! So until I can do it unfortunately it falls to him but he's fine with that! I spoke to the ms nurse on the phone and she does sound lovely so that will help having someone nice to speak to! I'm having a BAD day today but I'm hoping once I start the treatment I'll have a lot less bad days than in do now! Thanks for replying its great having people on here who know how you feel because they have been there themselves!

byhookorbycrook · 22-10-2012 10:33PM

Worried, my husband used to do my injections too. I could do it myself but had a thing about pressing the button!I found ice on the site beforehand and a glass of wine helped.
I had some of the girls on speed dial,who would be used to injecting horses.I's text them and say that if they didn't hear back from me within 20 mins,I'd need a hand. Nothing like the threat of a (well-meaning)friend used to injecting non-complaining animals without too much finesse to make you want to press the button!!:D Only ever had to call on them once(had two big glasses of wine at that stage.)

byhookorbycrook · 22-10-2012 10:34PM

Fergal, glad the Gilleyna is doing its thing.

Anyone here get Fampryra yet?

coughdrops · 23-10-2012 08:09AM

byhookorbycrook wrote: »

I found ice on the site beforehand and a glass of wine helped.

if you hold a can of deodrant or hairspray against the site before hand, it's nice and cold (handy if you're staying away with no ice).

Maybe avoid the wine if you're injecting in the morning

fergal.b · 23-10-2012 08:33AM

Also if you hold the vial in your hand for a few mins before you inject and bring it up to your body temperature it can cut down on the sensation of it going in, another glass of wine can also help with this

coughdrops · 23-10-2012 08:55AM

Really regret the decision to inject in mornings now- me sat with needle under one arm warming up, and a can of lynx on my leg cooling down, while the rest of you get sloshed in the evenings.

Worried 27 · 23-10-2012 09:43AM

They are all get suggestions I never thought about all the little things I've just been thinking about sticking the needle in ; ) I was thinking about when to take I hear taking it at night is good because if you do get the side effects at least you are sleeping through some of it! Does it matter when you take it?

coughdrops · 23-10-2012 10:24AM

worried27, your nurse will chat to you about that, as I think it depends on the meds and your routine.

I've always done it in the morning- it's part of my daily up-jab-shower-dressed-coffee routine now. A friend of mine on Rebif takes it before bed, like you said she sleeps off a lot of the side affects. I've not had any reactions to Copaxone that made me think I should do it at night. In fact, if I get a site reaction in morning, it has usually gone down a bit by night time.

Worried 27 · 23-10-2012 11:16AM

coughdrops wrote: »

worried27, your nurse will chat to you about that, as I think it depends on the meds and your routine.

I've always done it in the morning- it's part of my daily up-jab-shower-dressed-coffee routine now. A friend of mine on Rebif takes it before bed, like you said she sleeps off a lot of the side affects. I've not had any reactions to Copaxone that made me think I should do it at night. In fact, if I get a site reaction in morning, it has usually gone down a bit by night time.

Thanks for that I was not sure! I'll def ask the nurse about it.

byhookorbycrook · 23-10-2012 09:33PM

I used to take my Betaferon and then later Avonex about an hour before bed, having taken paracetemol first. Don't think I'd have managed the morning as I always got the flu-ey effect.

outnumbered82 · 23-10-2012 10:32PM

I take my Rebif in the evening. Glad I started that way as I had very bad flu like symptom at the start. Use to wake up shivering for around an hour every time I took it for around a month. So night was best for me

coughdrops · 25-10-2012 12:51PM

Hi worried27

Hope you got on ok yesterday, I was thinking about you last night

Worried 27 · 25-10-2012 01:21PM

coughdrops wrote: »

Hi worried27

Hope you got on ok yesterday, I was thinking about you last night

Thank you so much it got pushed out to today and she's on her way now I'm absolutely terrified I'm just hoping it goes well!

fergal.b · 25-10-2012 02:24PM

Worried 27 wrote: »

Thank you so much it got pushed out to today and she's on her way now I'm absolutely terrified I'm just hoping it goes well!

I know it's easy to say but try to relax there is nothing to be terrified about as you will see when it's all done.
Best of luck "if you can pluck an eyebrow you can do this"

.

coughdrops · 25-10-2012 03:24PM

It will go fine, once you get chatting to her you'll start to relax. Ask her any questions you have (there is no such thing as a silly MS question), and she's heard them all before.

Chat to you later!

Worried 27 · 25-10-2012 03:25PM

That was no where near as bad as I thought it would be! It took a bit for me to get the courage to press the button but I got there in the end! Just hoping now for little side effects! Now it's done I'm wondering why I was so terrified!

coughdrops · 25-10-2012 03:47PM

Is your med once a week? (sorry, I get mixed up between them all)

Glad it went well... I remember thinking the same after I'd pressed the button!

Hope you have a nice relaxed evening planned, some choccie would be nice... you know, cos you had to have an injection... so you deserve it... tell your hubby I said so...

Worried 27 · 25-10-2012 03:52PM

coughdrops wrote: »

Is your med once a week? (sorry, I get mixed up between them all)

Glad it went well... I remember thinking the same after I'd pressed the button!

Hope you have a nice relaxed evening planned, some choccie would be nice... you know, cos you had to have an injection... so you deserve it... tell your hubby I said so...

Yeah it's once a week the nurse is coming again next week just to see me do it on my own! I'm already relaxing on the couch and I have the evening off! Already had the choc but will prob have more it has been a traumatic experience after all ; )

Thanks to everyone who has replied to me over the last couple of months ye have all been a great support and help I really appreciate it!! X

fergal.b · 25-10-2012 05:22PM

Worried 27 wrote: »

Yeah it's once a week the nurse is coming again next week just to see me do it on my own! I'm already relaxing on the couch and I have the evening off! Already had the choc but will prob have more it has been a traumatic experience after all ; )

Thanks to everyone who has replied to me over the last couple of months ye have all been a great support and help I really appreciate it!! X

"No worries 27"

outnumbered82 · 26-10-2012 12:41AM

Just found out I need glasses due head aches and eye pain. Was wondering could I claim anything for them since it's due to the ms I need them?

mamakitten · 26-10-2012 08:56PM

Hiya I am posting on behalf of my hubbie, he isnt into internet forums or anything like that, he leaves all that gabbing to random strangers to me

.

Anyway is anyone here on Copaxone and if so how are your skin reactions? He has been on it 2 yrs now and fingers crossed its working very well, but in the last few months especially he is finding them more painful and there are less areas he can use due to intense pain. He cant inject his legs at all anymore, his arms are getting bad so that just leaves the belly and butt lol. He gets welts, lumps, bruises etc which are very unsightly and sometimes very sore, and can last days. He was talking to the Copaxone nurse but all she could suggest was the usual heat pads, cold pads, increasing needle depth etc. Any one got any secret miracle tips they want to share ???

coughdrops · 27-10-2012 10:08AM

I am on Copaxone nearly 2 years now. I prefer injecting my belly, that seems to have the least reactions. I mainly inject there, I don't rotate as much as I should.

On my legs and bum I can get quite sore raised lumps/welts. Not every time but fairly often. I try to cool the area first, I don't use the coolpacks (that would be too organised of me

) so I use a cold can of hairspray/deodrant or a wet face cloth- those things are all damn cold when you've just got out of a warm bed. Cooling the area seems to be the best way of avoiding the lumps for me anyway. I don't inject straight after a shower, as I am too warm. If I get a particularly sore reaction, Nurofen Gel rubbed into it helps relieve it.

The reactions are annoying. I inject in the morning and it can still be sore going to bed that night, making it uncomfortable to lie on my leg. I usually use the Gel then.

I've only had a bruise once or twice (as in a "normal" purple bruise), and I think they were caused by me pulling the needle out a bit awkwardly.

Not really much help to your hubbie, but his experience sounds pretty similar to mine.

ElleEm · 27-10-2012 12:53PM

mamakitten wrote: »

Hiya I am posting on behalf of my hubbie, he isnt into internet forums or anything like that, he leaves all that gabbing to random strangers to me .

Anyway is anyone here on Copaxone and if so how are your skin reactions? He has been on it 2 yrs now and fingers crossed its working very well, but in the last few months especially he is finding them more painful and there are less areas he can use due to intense pain. He cant inject his legs at all anymore, his arms are getting bad so that just leaves the belly and butt lol. He gets welts, lumps, bruises etc which are very unsightly and sometimes very sore, and can last days. He was talking to the Copaxone nurse but all she could suggest was the usual heat pads, cold pads, increasing needle depth etc. Any one got any secret miracle tips they want to share ???

I exclusively inject into my hips because of reactions everywhere else. I used to use ice packs and Difene gel but I realised then that I should just stick to the one place that doesn't react. I also inject right before bed so if I get itchy or sore, I'm asleep so less likely to notice it!

ryoishin · 27-10-2012 01:53PM

Hey,

Looks like my 46 year old mother has MS, shes getting the spine injection test and more blood work but the specialist seems pretty sure that's what it is as they have already ruled out other forms of immflamation.

I have 2 questions.

1. I have a history of immflamation in my pelvis and my left eyesight is getting bad. Is MS something I should be talking to my doc about as there was no family history of it when my issues arose. I had an MRI and my eyes checked in hospital at the time and was told to stay active and wear glasses. Im 28 and male. Im also worried for my daughter as there seems to be a family connection with MS espically for women. The question might sound selfish but being a parent it has to be asked.

2. Has anyone tried using food to get good results. see the link

Thanks,

John

MS in all its glory

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