Forum

How to start DMD'S

Hi I was dx in June and my neuro said they thought I would qualify for DMD’s but I could talk this through with my MS nurse. However just before my appointment sadly my MS nurse became poorly and the earliest I will see her now is October, she may be off indefinately, a few days before my second neuro appointment. I’m not sure now what happens now or whether I can do anything to start the process or just be patient and wait for my neuro appointment in October. Unfortunately there is no one to cover her and I’m sure she will be really over worked already when she gets back. I also have started to get the hug back which is how my first main relapse started, I am hoping I am stressing about a trip tomorrow and it will disappear again but not sure who to call if it is the start of another relapse. My gp has started me on gabapentin from neuro letter but am not on anything else for permanent spasticity in my hand and arm, although I have been referred to an OT but told this could take five to six months to come through. I have seen a physio privately to try and get something started on my arm as I can’t write properly and work in a school. (please ignore any spelling mistakes lol). Feel like I have been told I have MS but no support. No ones fault really, just feel very lost. Mish x

Shame about your MS nurse’s illness, but what bad timing for you!

I’m not sure how you will be able to get around the DMD thing, but someone must be doing the paperwork for her for ongoing prescriptions and funding requests that haven’t been completed yet and they’re the person that you need to talk to really. Maybe if you make a decision about which DMD you want to start on and then contact your neuro’s secretary (or your neuro directly if you have his/her email address) to say that you want to start on X and could they please tell whoever needs to sort out funding etc because you understand that it can take two or three months for it to all come together… your nurse is not expected back till October and you’re sure she’ll be swamped… etc? Worth a try at least.

There’s no good reason why your GP shouldn’t prescribe baclofen for your spasticity - it will most likely help your hug too. If he/she is being difficult, you could speak to your neuro’s secretary and ask to get the OK from the neuro for the GP to prescribe. If that’s not possible then your private physio could write a quick note to the GP to say what the problem is and that a muscle relaxant would be helpful - that might be good enough to unbend the GP.

If you start a relapse and it’s bad enough to need steroids or new meds, you can call your (overworked!) neuro’s secretary again, try your GP or go to A&E. If you don’t need steroids or new meds, there’s not a whole lot anyone can do anyway, so I normally just tell my neuro what happened next time I see him.

Just had a thought about DMDs and baclofen approval - I wonder if your neuro has clinics at another hospital? When my nurse was off sick, the nurses at the other hospital filled in. Worth asking I would think?

Good luck (and I hope the hug is not the sign of a new relapse!). Enjoy your trip :slight_smile:

Karen x

Hi Mich,

Karen has given you great advice as always but i would just like to say if you go on the ‘msdecisions’ website there is information about all the DMD’s. Get yourself educated about the different ones so that you can make an informed choice about which one might suit you best. When the time comes to choose you will not slow the process down any further as you will have a good idea which one you want.

If you have further questions about particular DMD’s post on here again. People will be more than happy to help.

Best wishes

Teresa. x

Thank you both for your help. Unfortunately my MS nurse covers both hospitals in my area so i am not sure if there is anyone to do her paperwork, although it can’t all be piling up for her i hope! I think I may have to try my neuro’s secretary to see whats happening about DMD enquiries. My neuro said she ‘thought’ I would qualify but i could talk it through with nurse when I see her, so not 100% sure I will. I have looked up criteria but I am still not sure if I do or not. I had two previous minor episodes which lasted a couple of months or so each and this one which started in February and although greatly improved is still causing me problems. I had been reading up on different DMD’s to talk things through with nurse but was waiting to decide once I had spoken about things with her. It seems a big decision to make without talking it through with someone. I guess I’ll get there eventually. On the plus side had a great trip thanks, been to Paris and back today, poor ribs and little legs don’t know what’s hit them lol…thank goodness for taxis! Think tomorrow may be a couch day. Thanks again. Mish x

Mish, For what it’s worth - it sounds like you would meet the criteria to me - but i’m no expert!!

Bear in mind that when you do see neuro/ms nurse they tend not to stear you towards one particuler DMD. They tend to stay neutral. At the end of the day they will take you through the things you can read up on yourself. This was my experience anyway.

You will tend to find that some people do really well on a dmd and the next person experiences side effects or that it doesn’t work for them. We are so different that the only way is to choose which one suits your lifestyle the best.

If you find the one you choose does not suit you then they will change you onto something else.

I have been on rebif for 7 years and have done well on it but theres no way of knowing how you will get on until you try.

Which DMD’s are you considering at the moment after reading up on them all?

Sounds like you might have to wait till October from what you have said unfortunately.

Glad you had a nice trip anyway! Hope you having a rest today!

Teresa.x

Hi Teresa thanks for your reply. I phoned neuro secretary who was lovely and said there was another MS nurse I could call for advise. Just rung her to find she is now on leave until mid September…doh! Looks like it might have to be October after all because she will be swamped on her return and as I am not her patient dmd’s may not be a priority. It was worth a try! With choice of DMD’s rebif or avonex were my top two. I don’t mind the thought of injections everyday like copaxone and like the sound of no flu but the possible problem of site reactions is putting me off. The possible flu symptoms with rebif seem like they may be over by morning if you inject in the evening but may get some site reactions. Avonex seems to have less site reactions but flu symptoms seems like they may last upto 36 hours. I work in a school so I do need to stay ‘well’ so I concentrate property. So a bit torn. Do you know if all the DMD’s can lessen the severity of attacks I have read somewhere that rebif can sometimes effect that and wasn’t sure if they all might help in that way? I already can’t write properly and hope to give my left hand the biggest chance of not getting that bad (i’ ve become a bit of a left handed whizz - lol)I know it’s impossible to tell but any chance is better than none! Do you think I have got the main pros and cons summed up right? Are there any main considerations I’ve missed? I know there are greater risks to liver function etc with some but blood tests would hopefully sort that out. Sorry gone on a bit…maybe I should have gone for a snooze a paragraph or so earlier! Lol : )

[quote=Anonymous]Hi Teresa thanks for your reply. I phoned neuro secretary who was lovely and said there was another MS nurse I could call for advise. Just rung her to find she is now on leave until mid September…doh! Looks like it might have to be October after all because she will be swamped on her return and as I am not her patient dmd’s may not be a priority. It was worth a try! With choice of DMD’s rebif or avonex were my top two. I don’t mind the thought of injections everyday like copaxone and like the sound of no flu but the possible problem of site reactions is putting me off. The possible flu symptoms with rebif seem like they may be over by morning if you inject in the evening but may get some site reactions. Avonex seems to have less site reactions but flu symptoms seems like they may last upto 36 hours. I work in a school so I do need to stay ‘well’ so I concentrate property. So a bit torn. Do you know if all the DMD’s can lessen the severity of attacks I have read somewhere that rebif can sometimes effect that and wasn’t sure if they all might help in that way? I already can’t write properly and hope to give my left hand the biggest chance of not getting that bad (i’ ve become a bit of a left handed whizz - lol)I know it’s impossible to tell but any chance is better than none! Do you think I have got the main pros and cons summed up right? Are there any main considerations I’ve missed? I know there are greater risks to liver function etc with some but blood tests would hopefully sort that out. Sorry gone on a bit…maybe I should have gone for a snooze a paragraph or so earlier! Lol : )

i’ve been using copaxone for 4 years now. the injection sites have been fine. i’ve started to find some sites painful but my consultant said to miss these. as long as i have a daily jab it will be ok. he also said that they have just done trials with a double dose 3 times a week. that would suit me fine. its like everything else you just have to suck it and see.

good luck

carole x

All i can say Mich is from personal experience. Never listen to just one persons opinion on this as we are all biased to the dmd we are taking!

My personal decision was because …

Avonex was an injection which has to go into the muscle so longer needle. The other are sub-cutanious so shorter (i am a wimp so ruled avonex out)

Copaxone was an injection every day and i thought it might be nice to have days off from it.

Betaferon has to be mixed by you so put me off.

Rebif was my choice as 3 times a week suited me best.

They all work in the same way - peoples experience of each of them is different.

I have not had the flu side effects with rebif but had a few headaches at first. I have not relapsed on it at all in 7 years.

In recent trials rebif came out on top

Teresa.x

Thank you both. It was really useful hearing how you reached your decision Teresa I had not thought about avonex being a deeper injection. I think rebif just shot to the top of the list! Lol Just need to get hold of someone who can start the process for me now. Mish x

Good luck with it all Mish!

I wish you well.

Don’t forget that there are down sides with them all and rebif has possible flu symptoms and there are also reaction site problems with rebif as well as copaxone.

It’s such a difficult decision i know and i don’t want to sway you in a particular direction. I would feel responsible if it didn’t suit you.

I am just trying to help you with the facts.

Best wishes

Teresa. x

Hi Teresa No don’t worry you haven’t swayed me at all. It was just really helpful. : ) I have been looking at this for some time, seen the ms decision website plus been looking at other posts re DMD’s to see pro’s and con’s for different drugs. I guess I have been waiting to chat through it with someone before committing to one drug or another. I have been hovering about rebif for some time but it feels like it will be the one I will opt for, assuming I fit criteria. Thanks again. Mish x

Mish I opted for the avonex as it was the least amount of hassle as it was once a week. It is an intramuscular injection and if I wimped out then I would never be short of willing nurses at work that could get their own back on me . I played around with the timings and found that the worse time was before bed as I had a bad nights sleep and had rigors. If you read other peoples experience then they say it is the better time. I now inject at 7am and take 2 brufen. The effects kick in around lunchtime and I get this weird stabbing pain in my ribs that lasts for about 1/2 hr. I have my lunch then and usually take 2 paracetemol . I’m then fine for the rest of the day. If I’m busy then I don’t notice the effects Hope you get sorted quickly Lesley