@NiceCupOfTea

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NiceCupOfTea

Treatment options (finally!)

Hi everyone, I have been waiting for progress but, unsurprisingly, it is slow going. I have had MS symptoms getting on for 5 years before doctors referred me to a neurologist this time last year. I had my first MRI in February and was diagnosed with RRMS in March and the neuro has taken my first set of symptoms 5 years ago as my first relapse. At the point of diagnosis I was told I wouldn't be eligible for treatment because the neuro wouldn't accept any of my symptoms within those 5 years as relapses which does my head in (quite literally!) I pushed to get a second MRI scan to show if it was active or not which I eventually did get last month, I got the results back this week and it shows that there have been new lesions within that 6 months and I, therefore, would be eligible for treatment. Very glad I pushed so hard to get a second scan! Anyway, when he made the referral to get the most recent MRI scan we talked about treatment options if it did show it was active and I chose Tecfidera. I have looked through all the MS Society and MS Trust stuff, and I have a friend who has been very kindly coming with me to appointments so hopefully she will be able to come with me for this, too. I am now waiting for an appointment with the MS nurses to go and discuss it more and make a decision, what is everyone else's experience of going in to talk about treatment options? Any advice? Thanks in advance for all your help!

potter

@potter

I think things are a little different in the US, I had a appointment with my neuro and he asked which DMT did I want to start on. I thought the neuro would make that decision, he told me to go home and do some research and make a decision. Potter

Avox

@Avox

My MS Doctor told me to go home and read all about the different meds and make a decision. I then had an appointment with the MS nurse who went through them in more depth and now I have to go to some group appointment to be shown the injectibles and what not and at that appointment I can make a final decision and start treatment a few weeks after that. Personally, I think it's unnecessary and a long winded way to go about it but thats me!

Stumbler

@Stumbler

@avox , it's good that you're being actively involved in your choice of Disease Modifying Therapy (DMT). This allows you to consider a drug that fits into your lifestyle. There are a range of DMTs now available, so do your research, then decide which one you'd prefer. And, have the reasons why listed, so you can argue your case. The following may be helpful :- https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf

Avox

@Avox

Oh I've already narrowed it down to a couple of possibilities and just waiting now for next appointment to see what they look like! I've had nowt to do but read about them so I'm not sure the nurse was expecting me to go in quoting the MS society pages about different side effects haha! The nurse said I could have whichever one i wanted which is actually not all helpful when making a final decision! But in terms of OP's post, be prepared to not necessarily have confirmation of what you're taking at the nurse appointment! I'd never heard to these group appointments!

Stumbler

@Stumbler

@avox , the latest thinking is to treat MS with the most powerful DMT, at the earliest opportunity, to limit and potential MS damage. "Time is brain" is the strapline behind this thinking. There are many examples of Neuros following a "conservative" approach, but I'm not sure whether a "you can have what you want" approach is that helpful either......

Avox

@Avox

I've narrowed it down to either one of the injectibles or Tec, mainly because I'd like the option to start a family in a couple of years and the wash out periods for the harder hitting drugs won't necessarily allow for that (I'm almost 31). I'd also quite like the option of having a stronger med if all else fails, rather than starting at the top and having nowhere else to go should it fail! I did ask if my MS doctor had recommended any particular drug over the others and apparently he hadn't but she was going to ask him at their weekly meeting, as any push in the right direction at the minute would be better than me just trying to figure it out alone!

Stumbler

@Stumbler

@avox, Lemtrada is seen as one of the most powerful, effective therapies available at the moment. It also does not stay in your system for more than a few weeks, so could fit in with your family plans. Maybe worth a look.........

Avox

@Avox

Ah see I was told Lemtrada would stay in the system for a lot longer than That, or it could have been down to needing at least the 2 infusions a year apart, maybe I'm getting confused. My only fear with that one is that it permanently changes your immune system and I'm unsure what the long term effects of that is? (Has it been around long enough for anyone to know??) But of the harder hitting drugs, Lemtrada would be my pick!

Stumbler

@Stumbler

@avox , @tracyd is knowledgeable about Lemtrada and she can offer first-hand experience. I'm sure she'll respond when she gets notified of the mention above,

TracyD

@TracyD

@Avox You have a friend request and I'm happy to share contact details by PM if you want a 'Lemmie' to talk to. Lemtrada does change the makeup of the immune system to a certain extent the 'cops and robbers' makeup where a person with MS has more robbers before treatment - the ones that cause damage come back much more slowly than the cop ones which keep the robbers in check There are a number of useful video links below which give a far more eloquent manner than I can. Dr.B offers his opinion regarding Lemtrada/alemtuzumab PART 1 of 4 https://m.youtube.com/watch?v=-OgvttCGJEY Dr.B offers his opinion regarding Lemtrada/alemtuzumab PART 2 of 4 https://m.youtube.com/watch?v=odCTYP1S-fc Dr.B offers his opinion regarding Lemtrada/alemtuzumab PART 3 of 4 https://m.youtube.com/watch?v=6sbjvgr__Pk Dr.B offers his opinion regarding Lemtrada/alemtuzumab PART 4 of 4 https://m.youtube.com/watch?v=SbXsk2sg_rk As for the duration that Lemtrada stays in your system - it's about 28 days - because of the depleted lymphocytes they prefer that ladies wait 4 months before trying to conceive after treatment to allow the lymphocytes to rebuild sufficiently to allow the mother to build up some lymphocytes to help fight infection for the safety of both mother and child

NiceCupOfTea

@NiceCupOfTea

Thanks for your replies @potter, @stumbler, @avox, and @tracyd! @avox - good luck with choosing, I feel so much like there is not enough data to really make an informed decision and then when you're offered all of them it's hard to know where to start! I am 29 and would also like the option of having children if/when the time arises although there's nothing on the horizons for that at the moment! When I spoke to the neuro he said I wouldn't be offered Lemtrada unless it was "very active" because he wouldn't be able to justify it, and my scan showed activity but not "very active". At the time we spoke (before the results) he said his recommendation would be Aubagio or Tecfidera and in terms of ease of use, tolerance to side effects in his experience, and in terms of maintenance regarding blood tests, Tecfidera would be his choice. I have read the MS Trust and MS Society info about the options but until I know which ones I am allowed to choose between it's hard to feel prepared! Based on what has been said above it sounds like I won't have a decision confirmed when I see the MS nurse anyway...

EdgarLeroy

@EdgarLeroy

There's 2 categories of MS drug treatments: maintenance and induction. The maintenance ones need to be taken continually and the protection stops when the drug is removed. They include the interferons, copaxone, tecfidera, gilenya, tysabri, aubagio, not sure what else. The induction drugs are given for a short time period, and their effect lasts much longer after the drug washes out. They change and modify the immune system cells, hopefully making them not attack your nerve cells anymore. These drugs include Lemtrada, Ocrevus, rituximab, cladribine, HSCT and I'm not sure where Zinbryta goes, maybe here. The induction drugs are probably best for women who are planning to have babies. They're all very effective, but have different side effects and monitoring requirements. Lemtrada and HSCT are the big hammers here, wiping out much or all of the immune system before reconstitution. They can have some serious side effects. The others are more selective and/or gentler in their action, with less monitoring necessary. Not all of these are licensed everywhere yet. I'm currently on cladribine. I finished my final doses last May. It was just approved in the EU.

Sandwich

@Sandwich

Tecfidera is licensed for "active ms" as is lemtrada. New lesions in a 6 months period sounds pretty active to me. Here are the guidelines http://pn.bmj.com/content/15/4/273 Worth noting active ms can now be defined on MRI findings alone. Well done on pushing for the second scan. You learn to be your own advocate with ms. As someone who has successfully managed to obtain my DMT of choice on two occasions, against the advice of my neuro(s), I would advise you to read as much as you can about all DMT's, who's eligible and the prescribing criteria. Print offs are useful to take with you. Do of course listen to what the neuro has to say too, just be sure to do your groundwork. Good luck whatever you chose. If you do a search you'll find lots of posts on here from people taking Tec and lemtrada.

NiceCupOfTea

@NiceCupOfTea

Thanks @edgarleroy and @sandwich, food for thought. I read through the article and will do more reading and thinking so that I make as informed a decision as I can. It feels like a full time job in itself!

EdgarLeroy

@EdgarLeroy

It gets easier as you become more familiar with this stuff. That Dr. B., posted by @tracyd above, has a lot of good MS videos on Youtube. Here's one: https://www.youtube.com/watch?v=51B1VpGchDc

NiceCupOfTea

@NiceCupOfTea

Thanks @edgarleroy, I've watched that video, it's really good, and I've subscribed on youtube to his channel!