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DMDs - How and when did you start????

Hi Everyone

I was hopeing to get some answers from those of you who are taking some form of DMD. I have not been offered any but after a few small niggles lately am thinking about when and how and when I might get the chance to start. From what I hear, my nurse tells me that they are waiting for another biggie to happen before they start me on something. I would prefer to start them now if I am honest before something nasty happens.

If you would be kind enough to comment on the following that would be great:

Were you put on DMDs straight away after a major relapse? if not how did you eventually get put on them?

Has the DMD worked as you expected and slowed down relapses?

Thanks

I was diagnosed in March 2005 whilst i was having a big relapse. I was told about dmd’s when i went to the ms clinic.

I had to wait a few weeks for an appointment to discuss treatment options and was put on the dmd rebif pretty quickly.

I was pretty ill at diagnosis. I have some ms symptoms and times when i am unwell but so far i don’t have any long lasting physical problems.

It is a personal view but i felt i wanted to be on the dmd’s as soon as possible so i could try to slow down the progression of my condition.

hope that helps

Teresa.x

Hi Anon,

I would also prefer to be on some form of DMD, but I haven’t been offered them yet either. I was finally diagnosed a year ago after my first major episode, but had been having symptoms for 24 years. The neuro agreed I had probably had MS all these years and said that there were white patches on my brain MRI. As I only had one very large spinal lesion, I didn’t qualify for DMD’s and he said I would have to have another relapse before being offered them. It’s ridiculous really…not sure if it’s because my neuro isn’t an MS specialist or if it’s just a postcode lottery really.

Could I ask how many lesions you have and how long have you been diagnosed?

Just feel like I’m not fighting back when I’m not on DMD’s!

Thanks

Fizzy xx

Hi, I woke up last July to foot drop, leg heaviness totally out of the blue, no previous symptoms etc. It progressed over a few days to no foot movement at all. I was admitted to hospital and steoke,spinal prolapse was ruled out. I got referred for an mri and was confirmed as hsving ms in january this year . I recovered with my foot after about 6 weeks of no treatment. When I saw my neuro he offered me dmds there and then. I have been on rebif since may this year. Touch wood, although both feet are numb and I get aches and pains, I have had nothing like that since. Dawn x

Only started my DMD Rebif 3 weeks ago. You need to have two major relapses within 2 years to qualify for these drugs. Trawling through my medical notes got me my DMD as has major troubles for many years. Normally you have to have funding approved for you also. Having a major flair up also helps, Especially if you have MRI and positive lumber puncture. BE

I had my first relapse 10 years ago then was completely symptom free until 2011. I was officially diagnosed in 2012 and because I had 2 active lesions on my MRI and many old lesions, (when I asked how many my neuro said “loads!” ) I qualified for DMDs and was put straight on Tysabri. I’ve been on it for 10 months and finally feeling almost “normal”

I got bad optic neuritis in one eye in September 2012, had MRI and was referred to neurologist who diagnosed me at my first official neuro visit. (He had seen me in A&E and arranged the blood tests and MRI, taken a history etc). That was December 2012.

We discussed DMDs at the same visit and he wrote me a perscription for Copaxone there and then. I took it to my pharmacist and collected it a day later and started taking it (not realising I was meant to wait for the nurse to call).

Am not taking DMDs at the moment as the Copaxone wasn’t working for me so I stopped taking it when my last script ran out (abbout 2 weeks ago) and am changing to Gilenya on November 6th.

So in 14 months I’ve had my first bad relapse, been diagnosed, 2 MRIs and 2 DMDs. It’s been a busy year! :smiley:

Just to add, I’d had one relapse prior to the ON in September but it was put down to a slipped disc in my back. My first MRI showed 2 spinal lesions and one small brain lesion. My more recent brain MRI showed that the lesion from last year was gone but I had three new specks of lesions on my brain.

Meme - just wanted say that in England you can’t just be given a prescription like you were.

We have to be approved for dmd’s by a neuro and then they arrange us to start the treatment.

We have the dmd delivered to our house by a company like bupa. We have to sign for the meds on delivery or leave a key with the company so they can deliver to a garage or leave instructions that a neighbour can take the delivery.

we can’t just go to the chemist to get it like an ordinary prescription. It can take weeks from when we first see the neuro to when we have the dmd delivered and then we have to wait to see the ms nurse so you can do the first injection with him/her.

The process can take a while here. Just wanted to clear that up so the poster does not get confused.

best wishes

Teresa.x

hi

i was dx in 2008 whilst having a big relapse.

i was asked to choose which DMD i wanted to have and i chose copaxone.

the neuro has to have it approved under the risk sharing scheme so it takes a while.

i finally started my injections in march 2009

it is delivered by a company called evolution home care

you can also collect it from a Lloyds pharmacy but i would have to travel to the next town and the home delivery is convenient.

i have no idea if this time scale is normal or if it is a postcode lottery in which case i’ve been lucky.

were you seen by a ms specialist consultant? if not maybe you should ask to be referred to one.

carole x

Hi

I was diagnosed in 2006, out of blue and was in hospital with my first proper relapse (I’d had tingly feet and thought nothing of it before then). At the time the neuro said he would refer me to the Walton Centre to a neuro that specialises in MS who was doing a trial and he may be interested in me. In the meantime to go home and get on with life. Within a month I was back in hospital with another relapse. It took 6 month and 3 more relapses until I saw the MS specialist who told me that I should go on DMD’s straight away. The trial he was doing was comparing Rebif 44 to Motoxantrone which was then followed by Copaxone. It was a blind trial, so he wouldn’t know which treatment I got but I did. I opted to go on the trial as these options were the best I could get.

I got put on Rebif 44 and did quite well on it for about 3 years (had a couple of relapses). Just before the end of the trial, Rebif stopped working and I went back to relapsing every 6 weeks. I was taken off the trial and was given the choice of Mitox/Copaxone, tysabri or Campath. I opted for Mitox/Copaxone as that seemed the safest at the time (the others were being used in trials and had quite a lot of bad side effects - at that time).

So, I had the Mitox, had a big relapse before I’d finished the full course but, carried on and then went on Copaxone. Since then I’ve had about 1 minor sensory relapse a year (depending on which neuro you speak to) which is much better than on Rebif or nothing.

I was left with damage from the big relapse in the middle of treatment but withing don’t appear to be getting worse so, I can live with that.

Sue

Well it’s somewhat similar here as in the neurologist has to arrange with a specialist section of the health department to say the patient has been approved for DMDs. They fax on a copy of the prescription to the unit and I take it to the nominated pharmacy (I can’t just go to any pharmacy - I have to name them in advance) and the pharmacy liase with the unit to have the DMDs delivered.

I have to collect them from the pharmacy and sign for them and I also was meant to wait for the nurse to take the first injection but I didn’t know that at the time.

I’m starting on Gilenya soon and same procedure. The neuro is posting me the script which has been faxed to the Hi-Tech drug unit and I will take it to the pharmacy and arrange delivery. I won’t be able to take it until my appointment in November with the hospital but I will have it in my possession prior to that.

It’s not all that different. I just collect at the pharmacy instead of having it delivered to my home and am given the prescription to take to the pharmacy. I have to call the pharmacy every month to arrange for them to get the meds delivered.

Thanks for the replies, really appreciated.

I keep getting (at least what I think are) minor relases, if such things exist. I spoke with a MS nurse the other day after I called the centre and she pretty much told me to go and see my gp if things don’t get better. She told me that all the issues I was describing were very MS like. As i’m in limbo, I guess that I am not entitled to any real specialist care?

As I have an appointment in February next year with a neuro, I was told that I was lucky that I did not have to long to wait and to bring in a symptom diary with me when I see them. I did see a neuro a couple of months back, but they hadn’t bothered to look at my scan before my appointment and the meeting was based upon citations from other doctors. My scan has been reviewed now and apparantly it does suggest demylation.

I guess that in reality, when I have my next big relapse and I head to A&E then I might get to the stage where they might do something about it.

This isn’t my idea of healthcare, this is cra p to be honest. I just hope that my next relpase does not cripple me in any way.

This sounds terrible but I am wondering if I am playing down my symptoms to be honest. Two weeks ago I was unable to get out of bed for two days due to numbness in my lower leg which prevented me from standing and suffering exteme tiredness/ dizziness. I am still struggling now, but it is not so bad at this present time.

With my last major relapse, I only got a referral for a MRI because another clinic suggested that I have one. Perhaps my pain threshold is set too high? Ive put up with ill health and these symptoms on and off for about six years now and I’m getting fed up of recieving no support whatsoever.

rantover .com

Anon - i am sorry i misunderstood your post…

You will not be offered dmd’s until you have a diagnosis.

I thought you were already diagnosed.

You can only get medication for symptom management when you are in limbo.

Try writing down all symptoms you have had so you can push forward towards a diagnosis when you next see the neuro.

take care

Teresa.x

Hi, I had severe optic neuritis in Aug 2012 which was fully resolved in a few weeks. A brain MRI showed lesions to be present. Then in Nov 2012 I suffered with tremours, weakness, numbness and pins and needles which lasted 4 months. I had a neuro appt due to this and a 2nd MRI was arranged. When I went to see another neuro to get the MRI results, my appt was in an MS disease modifying clinic. My diagnosis was confirmed and I was offered a DMD (Copaxone) immediately. This was 2nd Sept 2012. I was asked to have a think about it and phone an MS nurse I was assigned to when I had decided. I phoned her a week later and she sorted out the paperwork. My delivery came 3 weeks later and a week after that I had an appt with her to learn how to do the injections and commence treatment. I’ve now been injecting for 2.5 weeks. Hope this helps. Best wishes, RedShoes

Hi, I’m diagnosed and don’t take dmd. I never fully recovered from my first relapse and I don’t follow a relapsing and remitting pattern. I get symptoms coming and going and deteriation. I worry sometimes that I want to slow this disease down but for now I’m just taking things to help with symptoms Good luck with your journey to finding a diagnosis and I hope you find the support you need. Lynn