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DMDs information please

Hi, I have not been offered DMDS however have an appointment tomorrow and think I will be given my increase in relapses. What I want to know is for those who are on DMDs or have been how did your relapses change in terms of how often you had them and the severity? Compared to before DMD? And finally which one are you on and why did you choose it? Thanks guys…just trying to gain more knowledge x

I’m on copaxone, I was not given any choice my neurologist told me you can go on copaxone,

I had told him since my dx im still having relapses he kept telling me No you don’t have relapses only progression, so in 2011 he looked through my notes telling me I’d had 2 relapses in a 12 months proud, hence the copaxone, I was not looking forward to daily injections but I use the autoinject, its soon become a daily ritual, I take it and go to bed,

Has it helped with my relapses? For me yes they have,

I still get the of one which floors me but they seem very short lived, days instead of weeks

Al x

Thanks…whats the gap between your relapses hun? X

Please could I ask you both, without being nosey, but simply for some insight to my own symptoms. What form do your relapses take? I understand ms is such a varied thing, but I really am just trying to get my head round this as a newbie. Many thanks Sam xx

I had a relapse in Feb 12 (didn’t know it though). It was a numb leg. I had bladder problems in June 12, ON in September 12, numb leg came back in Oct 12 along with a numb and heavy arm. So in 12 months I had 4 relapses, 5 if you count the bladder issue. All went away although I think the numb leg is permanant now but it’s not causing any issues as such. Everyhting else is back to normal.

I started on DMDs in December and no relapses so far. It’s only early days obviously but I’m staying optimistic. Stress is a big trigger for me and even though my relationship ended recently, I didn’t relapse.

I suppose I’ll only know for sure when more time passes and when/if I have another MRI to check for new lesions.

Hiya

I was diagnosed out of the blue in 2006 (I’d had tingley feet for about 18 months on and off before then but not thought anyting of it). My first relapse pretty much ticked all the boxed on the MS symptoms list, blurred vison, nerve pain in side, tingle feet, balance etc etc. I was in hospital for 2 weeks while they diagnosed me and gave me steroids. I then had more relapses (4 in 6 months) DMD’s were mentioned after the 2nd relapse and I was passed over to an MS specialist neuro at The Walton Centre. He was doing a trial at the time for people with very active RRMS and offered that or any of the standard DMD’s. The trail was a blind trail to compare Rebif against Mitoxantrone followed by Copaxone (pot luck which one you got). Anyway…long story short I got picked for Rebif 44 on the trial so started that. I had one more relapse just after starting it but it was expected as it can take upto 6 months to get into your system properly. Once I was on it I had one or two relapses, which were not as bad as the ones I’d had before.

Unfortunately after about two and a half years the Rebif stopped working and I went back to relapsing every 6 weeks. I then changed to Mitox and Copaxone. I’m still on Copaxone now and it’s keeping the relapses in check, I seem to have one or two minor relapses a year which are mainly sensory. I have got a few issues that I’ve been stuck with from some of the bad relapses I had (pain in my side, fatigue, memory and balance issues) but I have no doubt that I’d probably be a lot worse off if I hadn’t started DMD’s when I did.

Sue

Its such a difficult thing to put a finger on when a relapse happens, I only know ive had a relapse once I’m getting better, I had one last week went to see gp with a very bad sore throat I couldn’t even talk without it being so sore he told me I had picked up a virus, I was in bed for most of 2 days its a good job I have vertical lift in the house I couldn’t even stand so my husband would help me into my wheelchair and take me up or downstairs, but it was very shortlived, with me it’s usually my bladder or my balance is pants last one I had was xmas time again it was only a couple of days

Al x

Hello,

So far only been on avonex for 3 months prior to starting i was having a relapse very 3 to 4 months, so will know soon if its working.

It was a hard choice. I went with avonex because it was once a week jab, no site reactions and their is some evidence that it slow’s disability progression. It is not an easy decision to make, all have bad points and good points. With avonex i jab on a friday eve so i only lose part of saturday to the side effects.

Use the:

website, it is missing a few auto inject devices for some of the dmd’s. Like the avonex pen, which is so easy to setup and use.

It was a very hard choice, but i got their in the end.

Goodluck with which you choose,

Darren

Thanks for all your information guys. Im sure there are more on herr who can help with this one. Another question is how do you know when its time for DMDs? Ive been medication free since 2004 on diagnosis. Getting a little panicky about my app tomorrow and not knowing what I want or should be saying etc. I would like another MRI I know that. And I know my leg is still poop too. X x x

Maybe there isn’t as many on DMDs as I thought? Just looking for experiences and advice. Thanks for those who have replied. I’m worrying if I’m being hasty thinking its time for DMDs but I know for certain I don’t want anymore relapses and two in the last six months well actually less has really scared me particularly as my left leg has been affected. Would really love some more replies please? :slight_smile: x

Hi Sammy, sorry forgot to reply. My first two relapses were sensory symptoms and ON. However this was in 2004 and I then didn’t have another until 2010 which was an increase in sensory symptoms and difficulties with my left leg… I had steroids for this which cleared it, then another relapse with the same symptoms in sept 2012 which steroids cleared however another relapse which started November and then peaked in January, treated with steroids but I’ve been left with weakness in my left leg and having difficulty walking past 1000yards, probably not even that. That relapse I did not realise was a relapse initially in November as the leg just felt slightly weaker but by January I struggled up the stairs…m.s nurses said a relapse is significant to affect your activities of daily life which this was. This is now why I think I may be offered DMDs but just wanting opinions as I’m by nervous about this prospect. However everyone is individual and you may be fine. I was for a good few years and am not written off yet :wink: haha. I had sensory symptoms but got used to them. Hope this information helps. And try not to worry too much, analyse etc. it’s very early days for you hun. Take each day as it comes! X x x

Hi

Have you tried the msdecisions website that Darren mentions above it is really good in helping you choose which DMD might be best for you. I am on copaxone but only been on it a few weeks so can’t really tell you if its working yet or not and the daily jag sucks but I very quickly got used to it and not yet had any reactions to it.

Try the decisions website it tells you everything you need to know about every DMD, side effects, frequency if use etc.

Good luck

Claire

Yeah I’ve tried that and it suggests avonex first then copaxone but was just looking for other people’s opinions. We’re you having frequent relapses? Leaving lasting damage? X x

Hi Lisalou,

I chose Rebif solely on the fact that it is meant to be the most effective. I have been on it for three and half weeks. In hindsight, I think I might have gone for Copaxone as it has less side-effects. I have had side-effects but they seems to be calming down now. However, I am not yet on the full dose.

I had my first serious relapse about 5 years ago. I had ON and I lost a stone in two weeks. I wasn’t diagnosed then, I wasn’t even sent for an MRI or referred to see a neurologist. This relaspse lasted for about four months. I then had relapses at about two year intervals. I was diagnosed last year and I had two relapses last year. I had a really horrible relapse this time last year. I had about 15 different symptoms. Very, very scary. I think that vit B12 or lack of it is central to my condition. I started taking this and my symptoms cleared over two weeks. I had my first MRI in May last year and I had ten lesions, none of these were active. I foolishly stopped taking vit B12 as it gave me tinnitus and I had another relapse at the end of last year. This time it effected my balance. I started taking B12 (500 mcg) and vit d3 (12,000 iu) and I came out of relapse at the beginning of this year. I have felt really good since. The only symptom I have at the moment is dystonia in the neck which is very annoying. Not sure if the Rebif is affecting my balance.

Hope that this helps,

Adrian x

I was having relapses every 4 to 5 months but the one I had in June 2012 was my worst however I had just moved house so put it down to stress but it lasted 12 weeks and symptoms were dizzyness, double vision and balance problems. Every other relapse has been difficulty using right arm/hand and right leg. All symptoms have cleared except I now have a limp and when tired cannot write, type or really use my arm. I cannot walk for any longer than a couple of minutes before my leg drags behind me.

Last Monday I got up to go to work and found I couldn’t put my socks on but by the time I saw my MS nurse the following day I was able to use my hand again so MS nurse said it wasn’t a relapse but I still have terrible brain fog even now. The copaxone will not fully be in my system yet (can take up to 6 months) so I hope this will be the last problem I have for a while (fingers crossed)

Hi I am on rebif. I had a couple of smaller relapses which completely cleared up, followed by my main so far, which started feb/march 12 which lasted several months and has left me with some continuing symptoms. I think I may have had a smaller relapse in between but because of existing symptoms I am not sure if they were just additional symptoms or a relapse, being only dx June 12 I am still learning about it. I started rebif in nov 12. Personally I am having quite bad side effects but I am still hopeful they will ease off and am still glad i chose it. It took me ages to choose it, so I want to keep at it for now, although my ms nurse thinks for me, things might not change. I chose it because I didn’t like the thought of daily site reaction marks, or the thought of losing my Saturdays to the flu symptoms of avonex which ‘on average’ can last for longer than rebif even if just once a week. However that’s where the ‘drugs effect people differently’ comes into effect because although on average the rebif symptoms should last around 8 hours, and you should hopefully sleep through most of them, for me they wipe me out for a lot of the next day. So instead of losing just Saturday I am losing a lot of Tuesdays and Thursdays to sleep too! Doh! As drugs effect individuals differently you really need to be aware of what the possible side effects and benefits each one brings to help you make your choice. I used ms decision website. It is good to hear about others experiences, I know, but think about what would fit you and your life best. Hope that helps a little and hasn’t confused you any more. : ) Mish x

Thanks…i have a three year old so I really wanted to avoid side effects however I want to try and pick one of the most effective ones too. I believe rebif is one of the most effective? But like I said bad side effectd are a worry with a child. So far he has not been affected by my m.s as yet and I wish to ensure this for as long as possible. Thanks. P.s hoping they will see me and say hi try our oral DMD :wink: x

Hi again I have probably not been on rebif long enough to know how effective it will be for me but one of the reasons I chose rebif is because I thought it sounded like it was more effective against the severity of relapses. My ms nurse seemed to think they all did the same job though. If rebif doesn’t work out for me they will change me to copaxone, I just want to give it a good 4-6 months first to see if things get better. Not everyone is unlucky with rebif. There is usually the option to change as long as you give it a reasonable amount of time to settle. Usually asleep at this.time but trying to wake up for hospital eye appointment : ) Hope things go well for you Mish. X

Thanks mish… See I work too so sleep in the day is not an option either. Work are brill, but I don’t wanna have to take more time off as I love my job and others in the community rely on me too. Good luck with your eye appointment x

Hi

Sorry for the late reply. Didn’t see this yesterday. Was having a cake making session ready for Comic Relief cake sale tomorrow - need to decorate it tonight!

I had my first symptoms out of the blue in Dec ‘08 when I woke up with a lisp and a tongue that was dry and a bit sore. I honestly thought I had bitten my tongue at first as it didn’t feel right. When I got to work I found I couldn’t write properly, the words wouldn’t flow on the page like they should. Over the next 2 days it got worse, my writing became spider scrawl and my speech became really slurred so I rushed to an emergency doctor’s appointment where he told me I needed an urgent brain scan. Scariest time ever!!! He faxed the hospital but they sent me a neurologist appointment for 6 weeks’ time so I presented myself to A&E as, by this time, it was a week to Christmas and I couldn’t have enjoyed Christmas with my 15 year old son without knowing what was going on in my brain. They kept me in for tests and let me out on Christmas Eve at 1pm with a diagnosis of CIS. They had considered steroids but by the time they had concluded the tests I was recovering slightly on my own and speech was beginning to improve. It took a while for the writing to settle down.

In March 2009 I was back in hospital, numb from the waist down, had the hug (not pleasant) and could barely walk as my legs had seized up so much. My hands were again tingly and co-ordination and balance was rubbish. I had a 3 day course of IV steroids as an inpatient which got me moving just and it took me a full month off work to recover as the fatigue really wiped me out. I slept more than any baby! It then took me a further 6 weeks to get my legs working anywhere like normal and to this day, I have constant pins and needles in my toes/feet if I walk any distance but this usually goes away if I rest for a bit.

Following this my neuro said I was a prime candidate for DMDs as I had had two clinically significant relapses in such a short space of time. I was referred to Addenbrooke’s and the nursing team there helped me to choose a DMD using the msdecisions website. I chose Rebif as I didn’t want to do a weekly injection (needle too big) and nor did I want a daily one. I use an alarm on my phone to remind me. I now use the Rebismart which wasn’t available at the time, it is much better than the original auto injector. I still have dexterity issues and the Rebismart is nice and chunky with easy to use controls.

I had a further relapse in October 2009, this was just sensory and didn’t need steroids. I had awful itching and burning in my left arm resulting in my trying to sleep with one arm out of bed for several nights as I couldn’t bear anything touching it. My local nurse prescribed amitriptyline which took a further week to work. She didn’t consider it a relapse but my neuro did and logged it as one. I still take the amitriptyline as I have tried to cut it out but the burning comes straight back. Following this relapse my left hand is permanently numb in the thumb and first finger and the numbness spreads if I do any task requiring physical exertion of my hands.

Since then I have been fairly well with just the odd good week and bad week with existing symptoms flaring up. If I rest up when this happens I can get them to ease off. However this week I am in the grip of a relapse, as you know, and I have taken the last steroids today. My walking is now a little easier. My right leg had begun to feel tingly and numb as far up as the knee and my calf had seized up on me making walking very difficult/impossible at times.

I am pleased with how Rebif has worked for me. I did have side effects at first - flu type symptoms - but these were easily controlled by taking ibuprofen and paracetomol at injection (usually bedtime so I sleep through the worst) and again up until lunchtime the next day. These eased off after 3 months just in time for me to go up to the next dosage and the side effects have not been a problem since. To be honest, when I started on Rebif I still had achy legs anyway so it’s hard to know how much of it was the relapse recovery and how much was side effects of the Rebif.

Good luck with your appointment, which you’ve probably had now. Take time to make your choice, we are all different and what’s right for one may not be right for everyone. Some people have changed DMDs if it doesn’t suit them so there is always that option.

Take care

Tracey x