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Injection Devices for MS medication - advice needed

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hi frank

i chose copaxone as my dmd and was offered the auto injector. i wasnt offered a choice for the injection device but just for the dmd.

the best thing about copaxone is the connections helpline.

they offer help with injection problems and a copaxone nurse even came out to visit me.

the best advice i could give is to look after your skin. make sure it is well moisturised because i had horrible dry patches on one of my injection sites.

i like the device, i wouldnt be confident doing it manually. the sound it makes when you fire it made me jump at first.

carole x

hi frank

i chose copaxone as my dmd and was offered the auto injector. i wasnt offered a choice for the injection device but just for the dmd.

the best thing about copaxone is the connections helpline.

they offer help with injection problems and a copaxone nurse even came out to visit me.

the best advice i could give is to look after your skin. make sure it is well moisturised because i had horrible dry patches on one of my injection sites.

i like the device, i wouldnt be confident doing it manually. the sound it makes when you fire it made me jump at first.

carole x

Answering all those questions would take me rather longer than I’m prepared to put in (sorry!), so fwiw…

I chose to manually inject Copaxone because the autoinjector was more like a firing pistol and I really didn’t see the point. It was noisy, abrupt and took away any control. It didn’t do anything for anyone who was scared of needles because the syringe was in plain view so I wondered why they’d bothered. (This was in 2006 - things may have changed.)

I was happy to manually inject Rebif when I switched to it, but the MS nurse told me about the Rebismart and fact that it had an alarm on it sold me on it. It turned out that I can’t hear the alarm from where I keep the Rebismart so I don’t actually use it, but I happy with the machine. It is a bit heavy and cumbersome (I cannot keep it still on my legs and I’m sure that adds to bruising) and it is annoyingly slow once you know what you’re doing, but I like the little capsule needles and I would imagine that people scared of needles would find it very helpful (I’m not scared of needles btw). I also like the fact that the capsules lead to a lot less waste (and smaller sharps’ bins) than individual syringes. That also means less volume when travelling (three and a half weeks worth of syringes that need to be kept cool is a right palaver!). The other benefit of the Rebismart is that it tells you where to inject. When you aren’t injecting every day, and have an appalling memory, that is a very useful feature. Having a history to hand is also good - when you muck up and get out of sequence, the calendar helps you to get back on track.

Merck have a “My Support” website for Rebif users. You might find some good info on there. They also have an app of the same name. Not sure about Teva and Copaxone, but I’m guessing there will be a website.

Hth.

It looks to me, Frank, that you are trying to come up with a solution to a non-existent problem.

Choose a DMD - get the injection device that comes with it. End of story. It might be the case that there is more than one device for a given DMD, but you are essentially locked into the manufacturers device. So, you are really asking the wrong questions.

It may be the case that the device might just influence the patient’s choice of DMD - but you did not ask this question. Of course, anyone who has looked at the msdecisions website will already have an idea of what each manufacturer’s device looks like.

But I have a question for you - did you get the OK from the webteam before posting your request for information (or even before taking on the little job for money)?

Geoff

I thought about this some more, and the more I thought, the less I liked the original post. This looks like a project from a certain “NHS Research Unit” based (as I recall) near Cambridge, who pop up here from time to time without asking the webteam for permission.

The concept of an “app” for iPads and desktop computers is flawed from the very beginning. In my experience, MS Nurses use a desktop provided by the hospital, and I have never met a major computer system where the systems admin people will allow any new software to be installed without running it on trial for something like a year to see if there are any adverse effects. The next question they invariably ask is “who will maintain that software?”

The concept of an FAQ for the newly diagnosed is equally flawed, in that very few newly diagnosed will be offered a DMD.

It seems clear from the original post that someone else is asking “Frank Spencer” to carry out a lot of work without doing the basic research first. This - if true – would violate the basic principles of Software Engineering, Systems Engineering and Knowledge Engineering, and suggests that the “someone else” is deliberately trying to do something informally that they will not get formal permission to do.

I could be wrong, and will apologise if I am. But, since it looks like someone is ignoring all the fundamentals of generating a set of software requirements, this is not likely to happen.

Geoff

I agree Geoff. I didn’t think to pause and properly read the post so, apart from thinking that Frank Spencer was surely not a real name, I launched into “help” mode. Doh!

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Er…ipads? Iphones? Apps? I can’t even get a signal unless I go outside and climb upstairs to the balcony. I don’t even have a mobile phone anymore as I can’t afford one.

So, injecting devices. Well, here in northwest Spain, if you are on Rebif, there’s no choice. You have to use the Rebismart as the pre-filled injections have been withdrawn.

In many ways, it is a non-existent problem.

For Tysabri, you go to a hospital for a monthly infusion. No, you can’t do it yourself.

Rebif - there are still pre-filled injections available in the UK. Most people use a Rebismart as it’s easy (ish).

I’m sure the others who are on Copaxone and Avonex and Extavia/betaferon will have opinions, but in reality the drug is the choice. Yes, in the past, the injector pens were awful and I refused to use the Rebiject as it was more like a torture device.

Yes, I’m out of date. I don’t have a portable device. I don’t work. I don’t have the money for an ipad and yes, I have MS and don’t take kindly to sarcasm from people who don’t understand what life with MS is like.

Also - what’s with the ‘unbiased advice’ remark in your original post? Do you think the people who post here are drug reps? If you do, then you are dead wrong.

I had already started to formulate my reply in my mind as I was reading your original post, Frank Spencer, and certainly was not influenced by Dr Geof although I do agree with him.

I found myself firstly wondering if you had sought permission from the Web Team to run this sort of research on this site and secondly I was thinking what an odd sort of question to be asking anyway as the choice of injecting device is pretty well irrelevant as it comes wih the DMD and each DMD has its own type of auto-inject system. I for one will choose my medicine for its benefits rather than the gadgets!

For the life of me I cannot see what sort of use an app would have in this sort of situation. The most likely scenario is that more and more people wil be moving away from injectables anyway so the only thing I can think of is that some pharma company linked to the manufacture of one the injectables is doing a last gasp effort to customise auto-injectors as a way of trying to improve their sales in the dying days on the old style DMDs.

Hmm, let me see. Which company of late has been up to all sorts of fairly desperate measures to slow down the release of an oral drug that is looking likely to become a first line therapy?

If it is Teva that is desperately trying to drum up business by creating new auto injectors they will win no favour or support from me after their dubious practices of late in pulling stunts such as the Citizen’s Petition to the FDA to delay the release of BG12. And of course since you can’t say WHO you work for all will remain speculative but since my cynical little mind makes me wonder such thoughts you can count me out…

B

Just for the record, Geoff is a real doctor - no need for any inverted commas. And, tbh, if you wanted to persuade us that you are legit Frank, being aggressive really isn’t helpful. A simple explanation and reassurance would have been plenty.

People spam or shill on this site all the time - we get wary, sometimes unnecessarily so, but it’s perfectly understandable.

Hi, I don’t mind sharing some of my views though they are somewhat limited. Due to circumstances beyond my control I am having to change to another Dmd. I was on Copaxone with the autoinjector and am now considering Rebif with the rebismart. I remember the ms nurse saying that the rebismart will detect whether you are putting the right amount of pressure on to your skin when you inject. I think I will find this very useful in contrast with the copaxone injector, the connections nurse showed me the ideal amount of pressure needed but I sometimes found this difficult to sustain especially when injecting the areas I couldn’t really see properly. Also I sometimes found the positioning of the “shoot” button quite awkward to use in some areas of the body. I don’t know whether I will have this problem with the Rebismart. Thanks Anne-Marie

Do we know he is a real doctor? I know a doctor of latin but i don’t call them a doctor.

I chose avonex on the basis its once a week and the pen seems to be the best device to use for me.

Sorry you have been attacked on here but if you are from a medical group you deserve it. If you are not Iam very sorry for the hostile posts.

Darren

Hi Darren,

Frank says he is working for an undisclosed pharmaceutical company or companies. 'nuff said…

B

Oh, Should realy pay attention. You can’t come here to make your commision, If you are going to use us you should atleast clear it with mss first. Truly a very immoral thing to be doing.

I’ve locked this thread as the original post has now been removed.

Back to a nice quiet relaxing Sunday afternoon.

Val

[Moderator]