@KeepSmyelin99

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KeepSmyelin99

Another question! Starting treatment.

I seem to be posting a lot recently but everything is starting to come together in my head now! I have my first appointment next week with a specialist MS Neurologist and the nurse. I have a list of questions and topics I want to discuss with them, but the main thing I want to be prepared for are their suggestions of treatments. So I’d like to know what the first DMT was that people were offered/told to consider? I have RRMS and my main problem at the minute is balance and walking (probably not helped by the fact that I injured myself due to trying to do too much!). The only other symptom I can think of that could possibly have a big effect on my day-to-day life at the moment is occasional vertigo (but I haven’t experienced that in the last month). What do you think they are likely to suggest to me? I want to research things so I can try a DMT as soon as possible. I finished a 5-day-course of methylprednisolone the other day and that is the only thing that I’ve taken so far. Any info about the most likely things they will suggest would be greatly appreciated folks! Thanks in advance 😉

NinaCeee

@NinaCeee

Hey I started copaxone for my first treatment out of choice, i thought I was going to pick tecfidra but then after speaking to my nurse it seemed I would experience some flushing, and stomach problems from the pills and just a little bit of a reaction from the injections. So I went with injections and I’ve had no side effects just the site reactions which can be a bit of a bitch for an hour but nothing unbearable. I didn’t like the thought of flushes because I’m a hot person or stomach problems. I can still drink have a good time whilst taking this medication and it doesn’t interact with other drugs as I have a type of chrons too. I’ve not been put onto brabio but it’s same as copaxone just different manufacturer. Some you may not be eligible for either. I also had same symptoms as you and I haven’t had another relapse yet. I think it’s trial and error. Hope this helps in some way x

Stumbler

@Stumbler

@keepsmyelin99 , a lot depends on your Neurologist. The latest philosophy is to hit MS hard and fast with the most powerful Disease Modify Therapies (DMTs). But, you may have a traditional Neurologist who believes in starting with entry-level DMTs until you progress, then stepping up treatment, as you accumulate more damage. It's best to do your own research and be prepared to argue your corner. The following may help you :- https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf

KeepSmyelin99

@KeepSmyelin99

Great @ninaceee thanks so much - I have family history of crohns so that would be something I’d consider! And thanks for the link @stumbler I’m hoping they want to hit it hard and fast but I’ll be prepared in case they’re a little more relaxed and then I’ll fight for what I want! Thank you both, this gives me a starting point 😊

Tom_Pouncey

@Tom_Pouncey

tbh, id ask people specific questions about each dmt youre looking at using. that link talks about the drugs but none about what its like to use the drug. I had tecfidera, its an easy starting option, high efficacy rate with a twice daily tablet. seemed perfect really. the worst decision of my life. youre meant to have a tablet during a meal, i wasnt told this for 2 months, if you dont take it with basically a full stomach you end up with serve diarrhea. this meant changing my life routine, eating a massive amount on a morning, fuck all for lunch, and a huge meal for tea. i suffered cram[ps, pains, and it was awful. these serve cramps are a COMMON side effect with this dmt, which no one told me, i was also told these normally disappear after 2 to 3 month, 9 months later it hadn't. i was a ticking time bomb of pain and wet shit, broke my arsehole into pieces in the mean time from all the time spent in the drop shop. every move i made, was it a fart? i only had 3 sandwiches for lunch? was at enough? the answer was always no. ive been caught short more times than warrick davies. A lot of people do just fine on this wankstain of a dmt, i didnt.

ItsMewithMS

@ItsMewithMS

There are a lot more options than when I was diagnosed 15 years ago. I was started on CoPaxone. Apparently there was also another drug available and the Dr said he used that if the person was having frequent and severe relapses. He said that Copaxone had a relatively slow load efficiency, so it took awhile to be at full strength, but once it was it was just as effective. He said it had fewer start-up effects. Also in addition to thinking about how the drug is to start up also think about how it is to stop. What if this first drug doesn't seem to work for you...how fast can you get it cleared out of your system and switch to another? That was another thing he liked about it. After 11 years it seemed that Copaxone was no longer being effective for me and I could quickly switch over to Rebif. Which at this point seems to be working well - no new lesions but I am possibly sliding into PSMS which is more a factor of my age and years since diagnosis. I would think injection vs pill would be a "quality of life" question if you have a pill option that seems like an option. I've never had a pill treatment so am not sure if the side-effects are better or worse. I had more bumps after a copaxone shot (kind of itchy lumps that went away after a day but I had some residual lumps over time) but have more of a sting during the shot with Rebif. I've now set it to less dept so it doesn't bother me as much.

KeepSmyelin99

@KeepSmyelin99

Oh wow @tom_pouncey it sounds like you had a terrible time! I can’t believe they didn’t tell you about taking it with meals - especially since those kind of side effects can be just as limiting, if not more, than whatever symptoms you usually experience. Hopefully you’re on something that is working better for you now though? And I like your point about being aware of how easy it is to switch treatments @itsmewithms ! I hadn’t really thought about that before, but it makes sense because obviously I’ll want to try the next thing if we found out our first option wasn’t cutting it. I hope things go well on the PSMS front for you and you can get things managed 😊 For my treatments, I’ve decided I’ll try tablets, injections, infusions, and other alternative therapies - so long as the side effects are bearable enough and that they shouldn’t jeopardise any future health. Thanks for your words folks, this is all so useful!

ElleMaryse

@ElleMaryse

First of all...calm down! Take a breath! This will be okay! I promise. I know you’ve said you’ve wrapped your head around things and that’s a good start. Next stay off the internet! Do not listen to everything you read about MS. Okay now that we got that out of the way. I was just like you my first relapse or whatever you’d like to call it. I had vertigo, had balance problems, (I had double vision and numbness, later I developed dropped foot) it’s where your leg drags behind you. It’s a totally cute look, especially for Halloween! I told everyone I was practicing for my audition on the “Walking Dead” as a Zombie. I had it down, I would’ve got the part! Lol. It was awful but I just tried to make light of my situation. Now for you... they do have meds that can help with your walking if they deem that it’s necessary. But I feel that physical therapy will help you get back on your feet. Ask your doctor for a referral. PT helped me soooo much, but when I still needed a little kick after PT, there was a prescription available, called Ampyra. But I don’t know if you need that yet. I think PT is a better option and exercise. See where that takes you first. Vertigo, they will probably give you Meclezne. It will make you sleepy. That’s what they gave me. It’s just a glorified version of Dramamine that you use to not get sick on car rides or amusement park rides. As for a DMT. That will be up to your doctor and he/she will base that upon your MRI findings. If you have a lot of lesions they may want a more aggressive approach. That’s why they started me on Tysabri. They let me choose and I originally chose Avonex but I relapsed in a month (not bc of the avonex) and it was a bad relapse I had to go on the Tysabri. You seem to not be too bad but I’m not a doctor. So again, he may give you a few options. Just remember when making your decision the point of the medicine is to keep your MS from PROGRESSING FASTER. It’s not just a medicine to take every day, week or month. Everything you do from now on is to keep from progressing. Your exercise, your diet, your meds and vitamins. You have to pay attention to your body now, see what feels good and what doesn’t. Ask your doc/nurse questions. This isn’t a cold that will just go away. This is your life. So if you need to know something, ASK! I hope I helped a little. I wish you the best. Blessings!

Breezy19

@Breezy19

I felt completely bombarded with info about medications and having to make a decision about them on my first neurologist visit, so I’m very impressed at your intention to be prepared!!! Very smart. I started on copaxone and had no problems (once I started manually injection....the auto-injector never worked for me!). Three years later I changed to Gilenya due to new disease activity on MRI. been on it 6 months now and all going well. I researched a lot before changing, and a lot of the published scientific literature showed clear evidence for Gilenya being more effective than copaxone, so I was happy to switch. The neuro was very clear with explaining the risks and side effects and that you must avoid getting pregnant while on it. One thing I wish I’d known though, was that you can’t have “live” vaccinations while on it - some travel vaccinations are “live”, and if I’d known that, I would’ve gotten the vaccine before starting Gilenya, so that I could travel to places that require those vaccines!!! This website has a great collection of factsheets on all the different meds out there, as well as a comparison table that makes it really easy to understand what’s what 👍 https://www.msaustralia.org.au/about-ms/medications-treatments Good luck!!

KeepSmyelin99

@KeepSmyelin99

Hi @ellemaryse! Thank you so much ☺️ I love your enthusiasm for your Halloween look - I think we’re quite similar 😂 I might steal that explanation in the future (I did experience dropped foot a few weeks ago but didn’t really know what it was). There is already a noticeable improvement in my balance and walking today because I think the steroids I was on are still working 😊 But of course, I’m all for PT, Yoga, treatments and diet changes etc. if they’re gonna help! It’s actually weird how many little things, looking back, might have affected the way my body was feeling - I’ve always felt weird about coconuts and coconut oil and apparently they have the potential to make things harder for MSers! Not that I led a wild life before (haven’t even drunk a full bottle of alcohol yet, had a balanced diet etc) but I’m now seeing so many little changes that I could possibly make to help prevent progression and bad days. Thanks for your comment 🙏

KeepSmyelin99

@KeepSmyelin99

Hi @breezy19 Thank you so much! That link looks amazing, I’m sure it’ll help me lots 😊 It’s great that you mentioned the live vaccination thing - I can address this at my appointment to make sure I’m covered, although I don’t think that’ll be too big an issue because I don’t really have the travel bug/I’m more of a local sightseer 😂 But obviously it’s useful to know for vaccines against other diseases and making sure I’m protected before and during treatment. Yeah, I’m aware there are a few different things I’ll be asked to consider but I thought it best to ask and research before they’re even suggested, just so a treatment can sound familiar and I can know what it involves - there are so many different things these days which is really encouraging 😁

KeepSmyelin99

@KeepSmyelin99

Hey @lukezni ! I’m glad Ocrevus is going well for you and that you’ve got a hassle-free calendar eventually 😁 All of the DMTs you’ve mentioned are ones that seem quite popular and I’m sure one of their names will get mentioned at my appointment next week - and thanks to everyone here I’ll know more about them! I can’t express my thanks to this community enough! You’re all so kind and helpful and quick - it’s such a great help!

ElleMaryse

@ElleMaryse

Hey there keepsmyelin99, I’m okay with you stealing that for Halloween. Especially bc you came up with such a creative name to use for this little site. Well played. 👏 lol. Listen, the only real advice I can give you that has helped me through all of this mess of MS trials and tribulations (and treatments) is accepting the fact that yes it sucks. It’s a crappy chronic illness that we all have, BUT it cannot kill us. It can help that along if we don’t stay active and positive. Those are the 2 things that I have heard and the whole time I’ve been diagnosed. Stay active and positive. I understand it’s hard to want to be active when you get hit with the anxiety and depression that some of us do. Just understand that it’s normal to feel that way. We all go through it. It’s like a rite of passage with MS. Lol. But stay positive anyway, fight through it. Lean on family, friends and if they aren’t any help. Lean on God and yourself. You are stronger than you think. I won’t talk much about God bc idk what your feelings are about it or religion. I will say that, I’ve been through a lot in the past 8 years since my last horrible relapse and nothing but my FAITH has gotten me through it. I just want to say, it helps to believe at least in something as you go thru this. I’m by no means an MS expert but I know what has worked for me, from the medicines to the foundations, to the extra help, to having the positive feeling and Faith to face it all. If I could find a job helping people like this I would do it in a heartbeat but unfortunately there are no nursing jobs like this. 😞 Anyway, my dear, I’m here for you if you have any questions, problems, whatever. Just stay positive, scream whenever you want and always keepsmyelin! 🙂

ElleMaryse

@ElleMaryse

And no one can give you an idea about medicines/ treatments that would be factual for you. Treatments are all different for everyone and they react differently in everyone’s body. So to tell you this happened to one person, may not happen to you. The other thing is your doctor will know what treatments to suggest based upon what he sees in your MRI and your neurological assessments. If he feels you’d be okay on something like Avonex an older one which are like the first line of “defense” and less of a punch he’ll suggest it. If he wants to give you something with a little more of a kick he may suggest something like or something in that area. Typically they don’t suggest things like Tysabri (an infusion) right away unless they feel it’s a better choice for you and where you are in at your stage. Don’t worry if they want to put you on Tysabri instead of Avonex. Sometimes that’s better bc they’re kind of bringing in their big guns to hold up stuff before it gets out of control. It doesn’t mean that you are far gone in the illness. BUT again, they will always leave it up to you. So remember the choice is yours and these DMTs are just to hinder the progression of the disease. As you know, Unfortunately as of today they are not miracle cures. 😞 God I pray they were! But I believe they are getting closer to one. Will we ever see it? I only hope so. All I can tell you is that DMT side effects are going to be different for everyone just as much as the illness itself is different for everyone. Just bc I had dropped foot doesn’t mean you absolutely will have it. Or bc I took Treatment A and got a horrible rash and my hair fell out ( that didn’t happen) that it’s going to happen if you take Treatment A. It’s all different for everyone so you’ll be okay, just listen to your body.

KeepSmyelin99

@KeepSmyelin99

Wow @ellemaryse thank you soooo much! This kind of information and support is invaluable to me! I hope that one day we can see a cure, or at least part of a cure, but as long as we can all keep being ourselves then I think that’s a job well done 😊 Thanks for your compliments on my username 😂 I thought it’d be a bit of a laugh! If I can keep smiling and keep listening to my body like you say, I’m sure I’ll end up choosing the right thing for me 💕 Thank you again 😀

ElleMaryse

@ElleMaryse

You absolutely will end up choosing the right thing with an attitude like that! As I’m sure you’ve heard, when in doubt trust your gut! I have no doubt you’re going to be okay in this chapter of your life. You have the right idea about things and as long as you stay like that you’re gonna be stronger than what ails you. That my friend is all you need to be, stronger than your illness. Don’t let it beat you, you beat it! Again, I’m here if you need a friend! 😉

KeepSmyelin99

@KeepSmyelin99

Thanks so much @ellemaryse ! It’s lovely and reassuring that you think I’ve got the right attitude 😊 And the way I see it, I did so many things with MS before I even knew it was in my life, so I’m not gonna let it stop me doing more! You’re an amazing person - I’m happy to offer you a friend in me anytime as well 😉