Forum

DMD process

Hi, I am awaiting an app to discuss DMDs with the m.s nurse… What I want to know how long does the process take from meeting with the nurses, to deciding on one to starting? We are due a family holiday in May so will it be before this or after? Also if its right near to it can I delay it till after as I don’t want to risk spoiling the holiday for me and my family. Thanks guys x x x

Hi I discussed my options with the ms specialist and ms nurse on the same day. I decided on copaxone, and the ms specialist had to write a request to my health authority. From that day it took 5 weeks for the first batch to be delivered. I’m sure you could delay the delivery with the pharm company until after your holiday, I think thats what I would do anyway. Hope that helps.

Hi I discussed my options with the ms specialist and ms nurse on the same day. I decided on copaxone, and the ms specialist had to write a request to my health authority. From that day it took 5 weeks for the first batch to be delivered. I’m sure you could delay the delivery with the pharm company until after your holiday, I think thats what I would do anyway. Hope that helps.

Thanks I didn’t think it was a quick.process. Fingers cross no relapses before then eh? And. Hope they work x

Just wondering if anyone else can give their experience of this process? X

Hi Lisa, I emailed my Nurse this morning to let her know my choice. She said that I needed to have a blood test first before starting but once the results come back (hopefully fine), then she would put the order in. I’m not expecting it to be quick but you never know! Good luck Sam x

Hi Lisa

My experience of Copaxone was that the delivery company called to fix a date for delivery, and then the Copaxone nurse called to fix a date to show me how to use the tool.
You are in a different county/region, so your experience might be different.

Geoff

Thanks how many weeks was it about then for the process? Just thinking about our holiday you see x

Hi,

When I decided to try DMDs in April 2011,initially rebif we had booked a holiday to Australia and so I was quite anxious not to start before we went away-I didn’t want to deal with needles etc on the flights plus cos we were doing quite a bit of travelling around Oz in camper van I didn’t want the hassle. Also I wasn’t sure if I would get side effects that could spoil the holiday so I told the neuro and MS nurse that I would prefer to start DMDs once I got back and they were fine about it. The Nurse said she would fill in the paper work so the forms were ready to go off to drug company/delivery company and just to call her when I got back from holiday. I rang her beginning of August and about 3 weeks later the medication had been delivered to my house and the rebif nurse had come out to show me how to do the injections.

If you prefer to delay treatment until after your holiday like I did mention it to your nurse. It should be ok.

Cathy

Thanks for that … Just don’t want it to get right before the holidays you see. If its a faster process i.e two or three weeks then I may start them but any longer then theres a chance it could effect my holiday if I get nasty side effects etc. Plus think id rather be in the comfort of my own home for the first few weeks of the dreaded injections. X x x P.s your holiday sounds fab, ours is nothing quite so grand. Ladram bay in exmouth, Devon! Caters very well.for children so we adults can chill :slight_smile:

just to add to my previous post, your ms nurse will know what the timescales are. Mine told me it would be 5 weeks and it was, so if you ask the nurse she will probably know. Are you going for copaxone? If not, I think the others can give you side effects that might spoil your hols. I’d wait till after and enjoy your holiday.

just to add to my previous post, your ms nurse will know what the timescales are. Mine told me it would be 5 weeks and it was, so if you ask the nurse she will probably know. Are you going for copaxone? If not, I think the others can give you side effects that might spoil your hols. I’d wait till after and enjoy your holiday.

I’m in Ireland. Went to the neuro appointment in the morning. Was examined by the registrar and then the neurologist came in and explained the MRI results. We discussed whether he was able to diagnose me without LP and we were both in agreement that I didn’t need it (I think had I been more in denial he would have done the LP but because I was accepting the diagnosis on the MRI and relapses he felt it was unneccessary).

Then I discussed whether to start DMDs or not. I said I wanted to and he said it was a good idea. We talked about the various options and settled on Copaxone. He wrote the perscription and handed it to me. I drove home and went to the pharmacy who ordered it in and I collected it the next day.

I hadn’t heard from the copaxone nurse so I just did the injection that night after reading the literature in the box. I met with the Copaxone nurse a week later.

So, in my instance it was a very quick process. Diagnosis to first DMD in 24 hours.

Hiya.

The neuro wanted me to start DMD when I saw him Feb.

I decided what I wanted via ms decisions, so when I saw the nurse for her to show me all the different ones I already knew my decision.

It was still the middle of May before I started. I was the same as Geoff in that the company arranged my Copaxone delivery date and then a copaxone nurse arranged to come the next day to show me how to do it.

Hope it all goes to plan for you.

Pip

Hi,

I had my meeting with the nurse on the 4th Jan and had already decided beforehand that I was going to start Copaxone. The nurse had to send a prescription off to the medical healthcare company (Evolution) telling them I was starting Copaxone and I went back to the MS Centre 10 days later for a “pre-drug assessment” with a doctor. About a week later, I had a call from Evolution advising me that my first delivery of drugs was being delivered on the 1st Feb. I then had an appointment on the 4th Feb with the nurse to have the first injection, so for me, it was 4 weeks from the first meeting to decide the treatment to the actual first injection.

It will help if you know which dmd you want to start - if you haven’t already, have a look at the website - www.msdecisions.org.uk - this will speed up the process.

Good luck!

Sarah

I was told that it usually takes 2-3 months to get the first delivery (I’m in London). It was actually quicker than that for me, about 4-5 weeks, but then I had to wait nearly 2 weeks for the nurse to show me how to use the Rebismart before I could get started.

The quickest way to speed things up is to know what you want when you talk to the MS nurse. Then they can get the ball rolling. Then, if you don’t want to start until you’re back from holiday, just tell the nurse who’s going to show you how to do the injections (no matter what you choose, there will be this step) and you can arrange a date after you get back. It won’t be a problem, I’m sure.

Karen x

Hello again!

As you know I work at a school and I wanted to get over the worse of the side effects during the holidays so my nurse and I agreed to delay my first injection until the first week of the school holidays ie August. I’m sure if you explain to your nurse they will be happy to fit in with your life like they did with me. At the end of the day it’s your body and your life so it shouldn’t be a problem. It’s funny but I had forgotten until now why I had started in August when I had been so keen to get on the DMDs to stop further relapses. I think this only meant a delay of about six weeks anyway so it didn’t make a huge difference to the grand scheme of things.

Tracey x

Thanks for that, funny how variable it can be. However six weeks seem to be about the average doesn’t it? I’ve not got my m.s app yet and it’s been nearly a week now. So I may delay it till my return however I want the to start it ASAP as I have another holiday booked for five weeks after my return and I can’t keep putting it off. I’m weary about doing the ms decisions site as I’m not sure i am going to be offered those ones…I to the impression they will offer me two and I think that rebif and avonex? If they could make it a quicker process I would do it before this holiday. I can see the year 2013 being taken up with much of this process beginning, trying meds and seeing results (hopefully good) x x x

hi folks my son is 27 and is waiting for tysabri to be approved as his first line treatment he has RRMS which is very aggressive. He has had 5 acute disabling relapses in 6 months. he had a severely disabling CIS on 1st September 2012 followed by a 2nd event 31st oct, at which time he was diagnosed on the evidence of 2 separate MRI then he had a 3rd event 22nd dec, 4th event 3rd jan 2013 & 5th event 8h March 2013

Can anyone share their experience with tysabri? I am aware of the risk of PML and allergic reaction

how long have folk had to wait for it and is a permanent canula inserted in the arm or chest for the 4 weekly infusion?

how long does the infusion take and how do you feel afterwards?

so many questions…but really want to hear from the clients experience and not just the professionals

thanks

Hi mama b you might be better reposting this as a new thread as you may get more responses esp if you head it tysbari?! Hope it works for him. Good luck and best wishes x