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Disease Modifying Drugs

Hi, I am just looking to hear of others peoples thoughts/experiences with dmd’s?

I was diagnosed 3 weeks ago with rrms and my neurologist wrote several different dmd’s for me to research and on my next appointment within the next month we will discuss what one I am going to go on.

He wrote some that are done by injection, beta interferon which I’m honest I haven’t researched as much I couldn’t do injections and know they are quite low dose.

Lemtrada by infusion I have researched, but I don’t think this is one I would go for due to risks although I know it is a strong dose.

And so it leaves me to decide between the 2 tables, Tecfidera or Aubagio. Does anyone have any thoughts between these 2? Or if they have had or on them, how they feel they benefit?

Any advice is greatly appreciated.

Lynette

Hi, just seen that no one has replied to you yet, so although I don’t have much to contribute, here are my thoughts:

I was only eligible for first line, so I chose Tecfidera as it is the one with the highest ‘success’ rate. I also felt that taking a tablet twice a day would make me feel more like I was actually doing something about the disease. I An injection every two weeks (Plegridy, which was the other drug I was offered) would have felt too infrequent, but apparently some people like not having to think about MS every day. For me, when I’m having a bad day, I just think well, at least this next tablet will help. It’s all very personal and the various DMTs work differently, so it’s pretty much a case of trying it out and seeing what suits you. I’m sorry, I don’t really know anything more about Aubagio than you probably do.

It’s too early to tell if Tec is working for me as I’ve only been on it a couple of months, but the side effects for me are minimal so I really hope I do well on it.

However, I was really hoping for Lemtrada and sobbed uncontrollably on my GP when the MRI results didn’t show enough new activity to qualify me for it. She was rather taken aback as she thought she was giving me good news!

Good luck, I hope someone else adds their two penn’orth soon xx

hi

i’ve been on tecfidera for 2 years and i haven’t had a relapse (even though those flipping PIP forms tried to push me over).

i was on daily injections of copaxone which worked well for me for 3 years but then my injections sites started to hurt.

being a silly stubborn mare i dropped sites which hurt the most until i was injectingonly my left arm.

not surprisingly i developed lipotrophy quite badly and when my ms nurse saw it she said that i mustn’t inject again and she offered me one of the oral treatments.

i chose tecfidera because it has the best success rate.

carole x

Thank you so much Teal and Carol for responding. It’s a lot different reading up on the drugs to hearing people’s experiences.

The Tecfidera is the one I’m steering towards as like you Teal I feel I am doing something and they are regular. My neurologist briefly ran through the ones for me to research and explained the Lemtrada being done by infusion and admitted into hospital for about 5 days and the high risk yet it’s the strongest. I researched it a lot but came to the conclusion it petrifies me if I’m honest and I am a single mum (17 and 14) so it is a bit easier them being older but I work too and just felt the bad outweighed the good if something went wrong with a side effect with the thyroid etc.

Im a big wuss with needles, ok to allow a doctor to take but really don’t think I could do it myself and so I knew it would be tablet form but want the one that’s my best chance. If I’m honest I briefly looked at injection ones.

I really do appreciate you both giving me your own personal experiences and find it more helpful as I have done nothing but read text book stuff.

X

Hi Lynette

Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

It has information on all the options open to you.

There are a couple of things I would add to what’s been said already. First of all, subcutaneous injections are not like you imagine them to be. They are tiny needles, that just go under the skin, don’t hurt and are about 500 times easier to do than you think. So don’t just rule them out because you’re a bit nervous of needles.

Secondly, if your choice is Tecfidera versus Aubagio, then Tecfidera is more effective and has the same major potential side effects. If you do go for Tecfidera, search for some posts by Paolo Smythe, he is the ultimate authority on how to handle taking Tecfidera, i.e. how and when to take the drug to avoid side effects.

Personally, given the choice, in your shoes, I’d be looking seriously at Lemtrada. It’s the most effective drug on the market. It has the greatest risk, but the most likely side effect is overactive thyroid, not a great thing, but a huge amount better than MS (I’ve had both). If you wanted to hear some views on Lemtrada, have a look at the forum at https://shift.ms/ There are lots of people on there who’ve had Lemtrada.

Best of luck with your decision making.

Sue

Hi Sue, thank you for messaging.

It is between the 2 tablets I am looking at and the Tecfidera is the one I’m steering towards and will definitely look at posts by Paolo Smythe for tips, thank you.

When I first started researching the Lemtrada was high up and if I’m honest I do still wonder about it but the procedure and effects worry me. My neurologist had said it’s the strongest out the list he gave me to fight this asbest I can. He had said my ms nurse would speak to me about meds too if I wanted to discuss but I worry I won’t hear from her before lumbar next appointment. My neuro said he would be the one doing the lumbar puncture which is why it will be that appointment meds are chosen to go on.

I just realised reading through posts again I had said my youngest is 14, he’s just turned 13 ooops typo haha

I took an ocular migraine at work today and now I have my diagnosis my first instinct was panic that it was the ms, silly I know as I’ve suffered migraines all my life but my migraines changed last year from the pain and aura to the ocular and I had only experienced this ocular once before. My legs the last few days however have been like lead weights.

Coming onto this site and being able to talk to people that understand and have personal experiences has really helped me this past week as although the information and facts are brilliant, talking to people excels it.

Thank you x

Just my tuppence worth… I am hopeless with needles, but went onto Beta Interferon which is injectable - Rebif. You get a little gadget called the RebiSmart which does most of it for you, and I have had no problems (and no relapses) in the three years I’ve been doing it. Just switch it on, shove a clean needle in it, check which injection site you used last time and which you’re using this time (so you don’t inject the same site over and over again…), and press the button…

http://www.rebismart.com/en/index.html

I have been using Copaxone (three times a week) for the last year. I had the autoinject gadget which definitely helped at first. Sadly I soon started to experience more pain than I should have…along with lipoatrophy. I put up with it as long as I could but now i’m being moved from Copaxone onto Tecfidera. Have to stick with the injections until funding etc. has been sorted out but the change can’t come soon enough!

Juls

I think for balance you could do with talking to someone who has actually had Lemtrada before you make your final decision.

Katy79 is a good person to talk to, and she posted on here somewhere recently but I can’t find it now. You might be able to private message her. Otherwise, you can look on fb for the Lemtrada UK group and ask if you can join while you make your mind up, they won’t discuss other drugs but you would get an idea of the side effects/benefits people have experienced.

Typical! posted then immediately found Katy’s post that I had just spent 10 mins searching for!

Anyway link here to her post recently about the fb Lemtrada group https://community.mssociety.org.uk/forums/everyday-living/lemtrada-uk-and-ireland-facebook-group

Hello!

Very happy to answer any questions on my experience of Lem.

In case it is helpful, a little bit about my MS and decision to go for Lem

  • I was diagnosed last June. My only definite MS symptoms to date have been a period of about 6 weeks numb toes (which initially were coupled with a numb perineum but this went after about 48 hours). Oral steroids cleared these up. I had an episode of vertigo in July 2015 which my neuro thinks may have been an earlier MS attack (as I have a lesion on my brain stem) - but this was diagnosed at the time as BPPV (mechanical inner ear vertigo) and successfully treated as the same so it may well have been unrelated to my MS. Other than this, I describe myself as healthy and active of mind and body (I work a busy full time job as a City lawyer, love the gym and mountain trekking etc etc). So in short, my MS symptoms are currently very mild (to the point of non-existent really) and I am only relatively newly diagnosed.

  • My MRI scans show a slightly different story. My initial scan (March 2016) revealed I had multiple lesions across my brain (including dawsons fingers), a lesion on my brain stem, lesions on every section of my c-spine (except for C-4 which must have a special teflon coating) and two enhanced lesions on my t-spine. These last ones were the cause of my numb toes. A second MRI in June 2016 showed one new lesion - and I’m lucky enough to have a neuro who was prepared to use this, together with the vertigo, as evidence for a diagnosis of “active” RRMS qualifying me for lemtrada. I was not aware of any new symptoms in the period between March and June (in fact, my toes had returned to normal and I had been going a lot of long distance (25 mile + a day) hiking).

  • I decided very quickly that even though my symptoms were mild, there was no such thing as “mild MS”. The thought that my brain and spine were deteriorating at a faster rate than normal, even in the absence of clinical symptoms, really upset and scared me. I recognised that I had been lucky to date in that my lesions had been in parts of my brain I don’t use, or that I had sufficient neural reserve for my body to find a pathway around the damage and wanted to do whatever it took to preserve as much of that neural reserve as possible for the inevitable deterioration of old age. The Team at Barts describe this best with their “lake draining down a plughole” model. http://multiple-sclerosis-research.blogspot.com/2016/09/education-draining-lake-down-plughole.html. To my mind, my MS was clearly showing it had my CNS within firing range. I wanted to fight back hard before it got access to line ammo and learnt to shoot straight!

  • Lemtrada is the first line drug with the highest efficacy rates for stopping relapses - and there is evidence that it also normalises the rate of brain atrophy (which in people with MS is four times the rate of usual deterioration with age in people without MS). To my way of thinking, these were huge ticks in the “pro” box.

  • On the “con” side of the equation are all the various side effects - some of which are irreversible and quite scary. However, they are all hopefully manageable.

  • (i) infusion reactions during treatment - you are given steroids, antihistamine and anti-nausea meds to help your body tolerate the lem and told to drink lots of water to flush it through. You are also monitored very closely throughout the infusion and for two hours post infusions, and your bloods are tested everyday. If there are issues they should be quickly spotted before they become serious and managed. I had nothing worse than a mild headache on one day (paracetomol fixed) and a rash (calamine lotion helped). I was back at work/gym/parkrun in under two weeks

  • (ii) infections post treatment - as the lem destroys your lymphocytes you are left with a compromised immune system which can make you vulnerable to infection. You are given a month of anti-viral meds to help you manage this risk whilst your lymphocytes re-build post treatment. You are also asked to go on an anti-listeria diet for a month prior to treatment and three months post treatment. It is a bit like being pregnant (but with booze!). A compromised immune system means that it can be hard for post-lem bodies to deal with normally tolerable levels of listeria. Unfortunately someone did diedlast year as a result of having eaten food with listeria in the days leading up to treatment. The bacteria had survived in their stomach and made itself known after the infusions. The hospitals have now changed their protocol so that you have to start the diet a month before to manage this risk. The diet is fine and easily managed. I didn’t even catch a cold!

  • (iii) secondary auto-immune conditions - there is a risk of acquiring a second auto-immune condition. These are the irreversible side effects unique to Lem. I think the stats are that 1-in-3 will end up with a thyroid problem, 1 - 100 will end up with ITP (a blood clotting issue) and 1-1000 will end up with a kidney issue. All of these conditions should be manageable if they are caught early enough. To do this, you have to provide blood/urine samples every month for 4 years following your last infusion (so for five years overall as you also do this between infusions as well). You also have to see your MS nurse every three months. Whilst this feels like a big commitment, it is less than having to inject/take tablets/receive on-going infusions as with other treatments. And the secondary auto-immune conditions scare me less than MS so I feel that the risk of possibly picking up one of those in an attempt to deal with MS (which I know I have) feels a reasonable trade off. Im just coming up 10 months post Round 1, so it is still way too early for me to know whether I will have picked up one of these conditions - but so far so good and fingers crossed

  • the “cons” of lemtrada also have to be looked at in thecontext of the side effects of the other drugs - as there is no risk free option for us (even electing not receive treatment as that leaves us with increased risk of MS progression). Lem doesnt carry a risk of PML (which can be fatal) or have the potentially on-going side effects of some of the other drugs (tiredness, injection site reactions, gastro issues etc). Difference is, all of these side effects should stop when you stop taking the drugs (they arent irreversible like the lem secondary auto-immune issues)

  • there other factors too. i.e. the fact that lem is “two rounds and you are done” (hopefully!), and the implications that can have for being able to forget about my MS and just crack on with my life (and, if i decide to do so, start a family without having to worry about coming off drugs and leaving my MS unchecked whilst I try to conceive). The nature of lem means you also dont have the risk of “rebound reactions” that you can have when switching between some of the other drugs

So for me it was a risk based decision. I was prepared to accept the risk of the lem side effects for giving myself the best possible shot at preserving my neural reserve for as long as I can - in the hope that I can continue to describe myself as healthy and active of mind and body until the scientists land a cure for this b!@@dy disease.

I hope that helps? It is obviously a very personal view point, and everyone has different tolerances for each of the different risks we face - and different ways of tackling them. There is no right answer - save the one that you feel most comfortable with (and will hopefully continue to feel comfortable was the right decision at the right time as the future unveils itself)

K xx

(p.s. - hello teal - very pleased to read that tec is treating you well. That is truly fab news. Hope all else remains well?)

Hi Katy, well I dont have any side effects but too early to tell if it is working so to fingers crossed. MS is a strange beast. You have many, many more lesions than I have and yet I’m flattened by it, legs just won’t get stronger and exercising knocks me back. Although, as the ophthalmologist so kindly pointed out the other day, I am 50 after all! Also Occupational Health won’t give me IHR keep saying there is good evidence that DMTs improve symptoms (I told them Biogen would be thrilled if they could pass that evidence on!) and that nerve pain is psychological! Trying to find out all I can about likely eligibility for Ocrevus atm. Hope Round 2 goes well for you :slight_smile:

Hi Katy and Teal

Thank you so much for giving me a more personal approach to the Lemtrada as sometimes reading the leaflets/facts are the same old thing and basing on facts.

Katy, your story sounds very similar to mine in regards to viewing yourself as fit and healthy although I have got mild symptoms that come and go now.

When I had first started looking up the different drugs my neurologist had written down, the Lemtrada was the one that stuck out to me and knew it was the strongest fight I could give. Although my neurologist did not say what one drug to go for, he did refer back to the Lemtrada a couple of times and that it’s the strongest to fight whilst also explaining the side effects.

After starting to read it up, the more I read, the more I started to scare myself and maybe look a bit too much at the negatives of it. Time off work, not feeling well potentially, the increased risks.

However, I have to admit after hearing a personal approach this has altered my way of thinking again. It makes it seem a bit more real and that potentially it could be for me and that I should not have written it off so quick.

Can I ask, how was the actual procedure of the infusion? My neurologist said I would be admitted into hospital for 4-5 days.

Lynette x

Hello

Apologies for the delayed response.

I was treated as an in-patient at Kings College so kept in for 5 nights. That is their standard protocol - other hospitals treat as out-patients where possible. For the first two nights I was in a ward of four. For the last three nights I was in a private room (as they needed to turn the ward room into a men’s ward due to a number of patients coming in over night). Both were fine.

Prior to being admitted you are tested for lots of things to make sure you are healthy (e.g. Lots of blood tests, ecg, chest X-ray, smear, urine tests). This is about 6 weeks ahead of treatment.

On admittance they then re- test bloods/urine/ecg to make sure you are still well and a cannula is inserted. This was fine - mine was in my wrist.

Each morning I was woken early for blood tests. I made a point of getting up, showered and dressed before breakfast and walking the ward. Each day you are given tablet form anti-vitals and iv antihistamine and anti- nausea meds. On the first three days you are also given over steroids. This takes about 20 mins (some hospitals use steroids on all five days - just different protocols). Then you are given the Lem very slowly over about 4 hours. Your heart/ temperature/ blood pressure is tested every 30 minutes during infusion and for two hours following. My heart rate and blood pressure skipped about but I felt absolutely fine. Maybe a little dozy. I had a mild head ache on one day and a rash on the third/ fourth days. It looked spectacular but wasn’t too itchy. So no big dramas. Main issue was the boredom - Netflix is highly recommended (I watched all of breaking bad). I managed to sleep well each night despite the steroids and made sure I drank lots of water throughout which I am sure helped.

I felt pretty knackered at the end - but on my first day at home I asked my boyfriend to take me to the local country park for a walk. We didn’t go more than about 4 miles, but I’m sure the fresh air did me the world of good after being cooped up. Next day I felt fine. I took two weeks off of work post treatment to avoid the London commute whilst my immune system was at its weakest - but was out walking each day and doing kettle bells at home. I felt so well the challenge was to take it easy and give me time to recover. I was out running within the two weeks though.

So I had a really easy run of it - and am hoping for the same this time round (fingers crossed/ touch wood). It’s only one persons experiance, but from what I’ve seen on the fb group it is certainly not a unique one.

Very happy to answer any specific questions.

k x

Hi Kate

Thank you so much for getting back to me and sharing your experience, it really does help to speak to someone that has been through it instead of text book stuff which I think what freaked me out at first.

I think speaking to people adds personal depth and although it scares me, it doesn’t seem as bad as the picture I was building in my head.

For a good couple of weeks I eliminated the Lemtrada in my head, but I think to be honest as I said before I was (still am) working through the psychological side of things and mind was everywhere.

Now though I feel more positive and want to fight this and give my best punch at it. My neurologist was straight with me saying he could not tell me where I would be in 10 years time with this and did say my strongest ammo at it would be the Lemtrada although then came the risks : /

He had said if I went with it there would be lots of tests before, during and after which you described.

I have my lumbar puncture Wednesday which is when I will see him but my mind set when talking to him from that list he gave me is the Lemtrada.

It is good to hear you are doing well after the 1st round and I hope round 2 goes as well as can be, you sound like a very strong person.

Lynette x