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DMD's - the honest truth!

Hi everyone, Well as you know I’m thinking of what DMD’s to go on and I’ve read up on everything (read up on them all months ago and re-read everything again) and I’m aware of the side effects for each one but what I really want to hear is first hand experiences of each drug from people that have actually used them! It’s all well and go the consultants and nurse telling you one thing but its actually, in my opinion, better to hear it from people who actually know - people who are on the drugs or have tried he drugs and what their own experiences of them where. So these are the drugs I’ve been offered: avonex, rebif, betaferon, copaxone and then also tysabri. I know the side effects of each and the risks of each. What I really want to know are how have people found the side effects and how long they find they usually last for. This was originally why I was thinking of tysabri because as far as I can see it was the one with the flu like symptoms being minimal (lasting maybe an hour or so) and the infusion being only once a month so won’t interfere with my work etc Would be so grateful for any replies!

Hi Katrina, I was dx in January this year and was offered dmd’s. I too was so unsure as to what to choose especially with the list of side effects with each one. I chose rebif and the rebismart because it was only 3xa week. Being needle phobic I don’t think I could cope with daily jabs. As for avonex, although once a week, into my muscle was just too scary to think about. Can you not go on a dmd day at your hospital? I did and it was great you could play with all the different methods of jabs such as manual,autoinjectors,rebismart etc and inject fake skin. When I saw the avonex injector I must admit I just got put off with the force of the pen and needle size (sorry just my personal opinion and I know others love it). Anyway I have been on rebif 22mcg for 3 months, I work full time as a teaching assistant, am married and have a 14 and 10 year old. I am no longer needle phobic but best of all… Not 1 side effect at all! I sometimes get a little red mark at the injection site but that’s it! My bloods are fine too. I will admit that sometimes the injections can sting a little depending where you do them but on the whole it’s good for me. I hope this helps and you get all the responses you need to help you in,your decision. Good luck hun. Dawn x

Hi Dawn, Many thanks for your reply. I’m meeting with my ms nurse on Friday so will be going through DMD’s with her in more detail but always thought it was better to ask people that were actually going through it all and had been doing the drugs themselves. Really good to know that you’ve had no side effects. Originally I was thinking of starting tysabri but have decided to try one of the other 4 to start with for at least a year and see if there’s any improvement/reduction in relapses and severity of them. I thought about avonex as its only once a week injection but figured it might be harder because its into the muscle. Rebif appealed to me in some respect as its an injection into the skin and it’s 3 times a week instead of daily but am worried about the flu like side effects as I don’t want to be suffering afterwards because of work. Whereas from what I gather copaxone, even though its a daily injection there’s little side effects. Really positive to hear you’ve had no bad reactions to rebif though

Glad I could help. I like rebif as I get the weekends off! I think for me if I started copaxone, a daily jab would start to take it’s toll. Good luck hun in whatever you decide. Keep us all posted xx

Karina, I have been on Tysabri for 3 years and have never suffered any side effects. I have the infusion at my local hospital every 4 weeks and the staff are very nice. it takes around 2 hours in total. I see the same people every month having infusions as well, and that has helped as we have a good chat about things. You will have a blood test to see if you are JC positive, as this can in rare circumstances lead to the fatal PML. Your MS nurse will talk you through this I am sure. It has helped me level off and has stopped my relapses. Good luck with whatever you choice. Peter

Betaferon: fantastic. Flu symptoms for the first few weeks but totally controlled with paracetamol or similar. No injection site reactions. Relapses down from every couple of months to less than one a year and even then I’m back at work in under two weeks so it really does what it’s supposed to do. Good luck with your decision.

Thanks Peter - tysabri was the original one that I was looking at but there’s hesitance on my part and thought maybe it was better to start on the other drugs first. However I think statistics show that tysabri has a much higher proven track record of reducing relapses - 67% chance compared to 30% chance with the others. It’s just people started to make me doubt it but I think given that I’ve had two episodes that were quite major that both required steroids then that’s why the consultant offered me that option. And the side effects of it (other than the serious risks ones) seem not to last much longer than a couple of hours so seem not to interfere with every day life and wouldn’t interfere with work. I’m concerned that the other drugs will have a bigger impact in interfering with my work and my life in general. Thanks val for the response - I think it’s be flu like symptoms that would worry me as would interfere with work etc

Karina, it didn’t interfere with work or anything else at all. Ever. If you time the paracetamol right, it just doesn’t happen. I never had a single day off work because of side effects.

Hi hun, I have been on rebif for coming up nine weeks now…total needle phobic (fainter and always lie down for injections etc) however I felt that rebif was the best for me due to the rebi smart and also the fact it’s 3x a week. Some have said being a needle phobic why didn’t I go for avonex being once a week but for me I thought once a week I would dread it whereas three times a week it becomes part of my life and not a big deal if that makes sense. I’ve been really well onit. I’ve had very minimal side effects…nausea and the odd headache. I’ve not taken painkillers for weeks now and when I did I only took them before the jab. I had a massive headache when I went up to 44 however it came on before that injection and I do not think it was connected with the rebif at all now. Anyway all in all I’ve been fine. I have site marks and bruise every time and they last ages but I can cope with that if all of this is helping. I have also drawn blood a few times which is annoying as that does then bruise. It doesn’t hurt anymore than usual. And when I say hurt its more a sting and over with in seconds…again worth it if it helps. Out of interest why have you been offered tysbari… Round here its not offered unless the dmd injections fail or someone has very aggressive m.s? Good luck with your decision hun. I see you were a 1980 baby too just like me? Xxx

I’ve had a fair amount of relapses in the past 16 months so that’s why consultant offered the tysabri. But I know that the risks go up massively of pml if people on tysabri more than 2 years. So it’s a harder decision than I ever thought it would be - I was all for the tysabri and then started to get doubts as what if I can’t stay on it longer than 2 years then would it be better to try something else first or do the tysabri first and hit the rrms with the harder drug to start with to try and settle the rrms a bit. I’m just really concerned of what the other drugs will do in terms of immediate side effects (with tysabri the immediate side effects only really last for an hour). With the injectable drugs (other than copaxone) the immediate side effects being flu like symptoms can be up to 48 hours - but good to hear that you aren’t really having any Val and Lisalou

I think that’s rare but I can only speak for Betaferon with any certainty. Side effects if you have them, are only for up to 8 hours after the injection. But either way Karina, you may get no side effects at all, may people don’t. And you won’t know till you try so go for it anyway, without basing your entire decision on side effects that you may not even get. Much is made of these side effects but considering the number of people who successfully use DMDs for years, are they really as bad as you think they are?

I chose copaxone as the DMDs for me as like you the thought of flu like symptoms filled me with horror also didn’t want to be taking paracetamol on a regular basis on top of the other drugs. Also was concerned about depression being a side effect having suffered with this and on anti depressants. I’ve only done my 4th injection today, only affect is I have stinging feeling for about an hour but too be honest I am getting used to this. I can handle this if it stops the relapses. My MS nurse was brilliant at explaining the different options and made me feel like I could make a good decision. Good luck with making your decision.

Thanks val - I know you’re right and I think the decision would be easier in some way if tysabri wasn’t on the table if you know what I mean. Ms nurse is coming on Friday so maybe she’ll know more too. Although I know with the drugs it’s hit and miss with each person with regards to side effects but knowing my luck I’ll get them all!! Trying to weigh up my lupus into thing as well. Nothing I do in life is by halves! Lol! Barneyowl how are you dealing with the injections each day? Was it the side effects that made you choose that drug, as like me, was worried solely on the flu like symptoms and length of having the symptoms for?

It was mainly around the flu like symptoms I was also worried about remembering when I needed to do the iinjections. I am finding every day ok just built it into my night time routine.

Hi - thought I would throw mine in too…

I was on Rebif for 2.5 years - and it was awful. I really really struggled with the side effects - and they never calmed down for me. Injecting was never an issue as I am not needle phobic or anything - it must be a nightmare if you are. But I felt like (I am sure I didnt) I have every side effect going, headache, chills, general flu feelings - which you think at first wouldnt be too hard to cope with, but when 3 nights out of 7 are taken up with this is starts to take its toll. I got to the point where I just didnt want to inject and really got quite depressed about it. The day after injecting after having no sleep, work was awful and then the nights I wasnt injecting I was recovering and catching up on sleep from the nights that I did. But Rebif didnt really do anything for my relapses either and I am now on Tysabri. Like you said, once a month, minimal side effects and no relapses in the 17 months I have been on it. I am JC+ - althought I didnt find this out until my third round of treatment. PML needs to be taken seriously but its such a small chance for such a huge benefit (for me). The hospital keep a good close eye on everyone on Tysabri - but more so if your JC+. If I were offered Tysabri back when I went onto Rebif I would of chosen Tysabri. Its easier, more effective and all over in few hours. Plus you get to see your MS teram every 28 days which is a bonus. I am sure every hospital is different on that…

Good luck with your decision - we are lucky really that we have a choice!

Hxxx

Hi Karina,

I am still fairly new to Rebif (still on the titration dose - going up to 22mcg on Wed) but i have done a fortnight of injections and I have not had a single problem so far. I was worried about the flu effects and to be honest they might still come when the dosage goes up to 44mcg, but no way of knowing until i try. However the injection itself is painless, the device is really easy to use, the helpline and dedicated rebif nurse are great, and i believe based on my own research it is one of the more effective dmd’s.

I remember getting myself sooo confused when trying to decide, but just think about what is going to fit in with your life the best and remember that nothing is set in stone - if the side-effects are unmangeable you will be able to change.

Good luck, Laura x

Thanks Laura and Hayley. I think I’ve come to a decision to do the tysabri - at least for a year or so and see how I get on. Yes there are serious side effects being the pml but I will be closely monitored and will stop it straight away if there’s any problems. For me it was what I originally thought of doing and then doubted it but I think for now it’s the right decision - it will interfere with my life the least and will have better benefits than the other drugs in terms of slowing down relapses. Will have the JC virus test whenever I hear back from the consultant with the date and take it from there

Copaxone has worked for me for over two years. The downside is that you are not eligable for Gilenya if it stops working.

If you go for Tysabri, there is nothing to move onto, because all the rest are less effective.

If I had known when I started on a DMD, I would likely have chosen Rebif - but then hindsight is always 20:20.

Just remember that the longer you take deciding means more time for the MonSter to work on you - and this could make a big difference to you later.

Geoff

I’m not seeing the ms nurse until Friday this week so haven’t taken long to think about things in terms of the fact that I was only given the options last week at neuro appt by consultant when he officially diagnosed the ms. (Was diagnosed last year and then taken off the table due to other things they wanted to check as not all things fit - that’s when they finally said last week ms and lupus). So with copaxone you can’t have gilenya after it? But you can with avonex rebif etc?

No what they mean is if you been on copaxone only you must try a interferon and can’t jump straight to Gilenya.