Forum

should I start dmd's?

I am so confused. Have checked out ms decisions, have countless booklets from the ms society but am still in limbo. I am needle phobic and like the idea of the rebismart, is it gentle? I cant stand the thought of pishing a button to “fire” the needle in. My neuro recommended rebif. I work fill time, have trms but quite mild. I lost all usr of a leg last july have it all back mow. It took 6 weeks to work again. I hate having a bath so I shower as one leg doesn’t geel temperature and feels just too odd. Have the tiredness aches.and.pains. Will meet my nurse for the first time next week.

Hello, I cannot comment about Rebif as I am currently trying to decide myself. It is very hard to choose. Decision making has never been my strong point and this is just plain doing my head in!! Just wanted to say good luck with your decision and your first Nurse appointment. Sam x

Thankyou Sam. This sucks! I don’t want to be “what if”? .x, _

I would without a doubt. I dont qualify for them as I’ve only had one attack and frankly I feel like a sitting duck. You need to do what’s best for you but I would listen to your neuro x

Just going through similar to you…been told its time for DMDs and I now need to consider either rebif or avonex. I’m rubbish with needles too. :frowning: it does suck but we need to fight it hun and if this helps then we need to go for it. If I can reduce any further disability I will. I have not just me to consider but my family …good luck and keep,us posted xxx

Hi I use a rebismart and I do like it. I am not needle phobic mind but it is easy to use. You get a box of needles that are in little plastic capsules. Once inserted in gadget, you can’t see needle. It’s just like sticking the tv remote on your leg and pressing a button…well almost. You can feel it a bit but truly it is not to bad at all. You can set the rebidsmart to control speed it injects, it doesn’t suddenly fire in at all in fact it can go in slowly…hmmm probably describing is not helping but it can be programmed to make it as comfortable as possible if you have problems. Can’t offer comparison to other injection devices, but if you don’t like needles it could be a good option for you. Rebif itself brings some side effects but you really need to compare them against the other DMDs to see which you think will fit in with your life best. To be honest the side effects described are only an average overview and can vary from person to person…to be worse or better. Mish x

I’m pretty sure I have decided on Avonex and the main reason is the flu type side effects. I am the only person who can take/pick my son up from school. Avonex is once per week so I (hopefully) will have a little control over the timing of effects. With Rebif I am scared that with the injections being 3 times per week, I won’t be able to cope. I also prefer the non site reactions as my on is only 7 and it may cause him anxiety if he were to see anything. I want to thank you for your post, it has given me a kick up the bum to do something!! I will email my Nurse tomorrow and see what she says about me starting Avonex. Blimey, this is sounding like a decision!! :confused: Let me know what you decide :slight_smile: Sam x

My choice is copaxone or rebif I like the idea of 3 times a week but not the side effects. But then I don’t fancy daily and the site reactions. Erghhh if copaxone did a digital device like rebif then I think it would be the one for me x

Dawny, I went with Copaxone for five months but had to come off it because of too many IPIR’s and the effect these had on me. I would have happily stayed with Copaxone otherwise. Apart from the first week or so I had very limited site reactions. Sometimes the skin would itch the day after but cold packs helped with this. Also it is important to rotate your sites regularly and massage ( gently ) the site you have injected 24 hours afterwards to lessen the chance of lumps forming under the skin. Don’t inject straight out of the fridge or when your skin is cold as this will be painful. Adjust the needle depth accordingly. I had full depth of 10mm for hips and tum but had to adjust to 9mm and 8mm for arms and legs. Sometimes it was a pain to remember to inject but if you can, try to do it roughly at the same time each day, preferably at a time when you are relaxed but not tired. I’m now going onto Rebif but I’m sorry that Copaxone wasn’t for me. Whichever you decide I hope it works for you.

Thankyou everyone. You are so supportive xxx

I didn’t use the autoinjector with Copaxone because of the sudden firing of the needle (with accompanying sound!), but was happy to inject manually so it was no big deal for me. I was going to continue injecting manually when I switched to Rebif, but an MS nurse suggested the Rebismart so I thought I’d give it a go. It’s a very snazzy piece of kit, is dead easy to use and doesn’t give you that horrible fright. (Rebif needles are also finer than Copaxone needles so it doesn’t hurt as much, in my experience anyway - I am a wimp though!)

It’s been a while since I’ve been on Copaxone so they may have a new autoinjector by now, but if you want something that hides the fact that you are doing an injection (as much as is possible anyway), then you probably can’t do much better than the Rebismart.

Karen x

Hi Dawny I’m on Rebif. It’s so easy. I’m really pleased with my choice. And no flu symptoms at all for me. Xx

If you need DMDs, go for it. I can’t advise which to go for - I had Betaferon for several years. Like you, I’m needle-phobic, but Betaferon comes with Betaject which fires the needle for you. You don’t actually see the needle until after you’ve injected. There is a loud click when the needle is fired, which some may find off-putting, and a little ‘ping’ when the injection is done.

My main bugbear with Betaferon was having to mix it before an injection. Life would have been much easier if I could have just put a syringe into the Betaject. I don’t know what the situation is with the other DMDs.

It’s a pity that Gilenya isn’t used as a ‘first line’ DMD. Life would be so much better for us needle-phobics!

Good luck, whatever happens.

I was absolutely dreading the thought of dmd’s because of the injections. I used to nearly always pass out whenever I had a blood test done. My gp nurse used to joke with me about getting the bed ready for me to lie on. When the Copaxone ( connections ) nurse came to supervise my first injection she really thought I was going to freak out as I was shaking with all the heavy breathing etc. and she said afterwards that she very nearly stopped me from doing it as I was getting so worked up. BUT once she had calmed me down I finally injected into my stomach ( that’s got a lot of spare flesh !! ) and I just couldn’t believe how easy it was, I was so pleased I nearly cried. I must admit the immediate subsequent injections were not easy to do as there was only my husband and he had to do my hip as I couldn’t reach and it was so traumatic as I kept feeling I wasn’t ready and the stress made me sob a bit but finally I just said "do it ". It then got easier and easier to do, better if I was in control rather than hubby as he used to " ping " the needle on withdrawal ( he just couldn’t get that right, some men are just too clumsy!!! ). I think that if I can inject any one can