First MS Neuro Appointment!

[MSFlea]

Neuro confirmed in person that I have MS. I have RRMS.

To get me out of the current flare, I started steroid infusions today, and will do 3 days of it. I am hopeful that it will really help. I'm looking forward to seeing what my 'new normal' is (more like impatiently waiting for this flare to be over, 😂).

I'm to start on Kesimpta soon. Anybody else out there on it? Or been on it? I'm just waiting for the insurance hoops to go through (I'm in the US) and then the nurse will contact me to set up a date to come show me how to do my injections. I'm told they will actually come out to my house to show me how to do it.

Anybody else try Zonisamide for the fatigue? I'm to start it too. *edit: Zonisamide is for the headaches, I can't find the one he was supposed to order for the fatigue. Hm. Will have to check back with neuro!

I just wanted to also say thank you to this community for being so welcoming and supportive. You've made this diagnosis a little easier to mentally start coming to terms with. ♥️

[CatsandCars]

Hi, again! You've had an MS diagnosis for like ten minutes and you have already been prescribed a medication I have never heard of. 😊 I looked it up and it's a seizure medication. A lot of meds are used off label for other things, like gabapentin is a seizure med that's used for pain, restless legs, and even anxiety. I'm interested to see what others have to say. Hopefully I'm way off base, but if nobody here is familiar with it, it might not hurt to check with your pharmacy before you take it, to see if they have ever seen it prescribed for MS fatigue. If not, maybe you could call your doctor to make sure they gave you the right meds. I'm a little embarrassed to be questioning your doctor and I hate to put you in an awkward position , but my mom always says "better safe than sorry" and I'm inclined to agree.

[CatsandCars in reply to CatsandCars]

Hopefully, you're just getting some cutting-edge medication that I'm not aware of!

[MSFlea in reply to CatsandCars]

I'm glad you said that, I looked it up and I think they forgot the med for the fatigue! Zonisamide looks like it is for the headaches... I know he said he was going to prescribe me one for the fatigue that started with a Z though... But I don't see it. I'll see if I can edit my post to reflect that!

[CatsandCars]

Ah, that would explain it. I'm glad!

[Helpmeup]

Glad to hear you got an in person visit with your neurologist! The Solu-Medrol infusions usually work well and work pretty quickly. It will be up to your doctor to decide if you should get a prednisone taper for a few weeks after you finish the infusions. If you are only getting 3 days of infusions, you may not get a tapering dose. Some doctors use a five day course of steroids with a two week tapering dose. Check with your doctor.

The Kesimpta is easy to administer at home. The doses come in pre-filled syringes and go just under the skin (subcutaneous injections). You only need to take it once a month. If you are curious, take a look on youtube. There are great videos on how to inject Kesimpta. You'll see how simple it is!

Best of luck as you begin this journey. Please feel free to post any time with questions or concerns. There are lots of people here with lots of MS experience who are ready to answer any questions you may have to help you along the way! 🙂

[MSFlea in reply to Helpmeup]

The doc didn't discuss a tapering dose, so I'm assuming I won't get one. I didn't even know that was a thing! Thank you! This community has been so welcoming, I really appreciate it! I did go ahead and write another post for advice on how to handle falls, but I'm hoping they will stop once the steroids take effect, or I get on Kesimpta. I'm having to be super careful, especially getting up and going on stairs. It's frustrating, but I would rather be super careful than fall again!

[ahrogers in reply to MSFlea]

I got a 3 day course when first diagnosed and didn't need a taper.

[CatsandCars in reply to MSFlea]

Whether or not to use a taper after three days of IV steroids usually varies by doctor- or patient. I told my doctor that the oral pills bothered me, and he said I didn't have to take them.

[Helpmeup in reply to CatsandCars]

Hi CatsandCars! That is good to know. My neuro insists on five days of infusions and two weeks of oral pred! I always feel horrible doing all that and have told her so, but next time I need steroids, I think I'll just tell her I don't want steroid "overload". Have you found that three days of infusions work well?

[CatsandCars in reply to Helpmeup]

It used to, when I had better doctors and they gave me 1,000 mg at a time for three days, which has been pretty standard from what I've seen over the years. Then the bad doctor I've been complaining about would not give me steroids, said it was too extreme for my symptoms, took three months to relent, and then when I finally got the infusion I saw that the pump said I was only getting 500 mg. The nurse confirmed it, and that's half of what other doctors have given me. It didn't seem to do much. I had a slight improvement in symptoms after about three months.

It would be interesting to hear what others have to say about it. I've never needed more than three days at 1,000 mg.

I do have a new doctor I'm very happy with now, though. I call him "My shiny new neurologist" since he's only in his forties. He's my late husband's nephew, and his dad (who's retired now) was my very first neurologist when I got diagnosed. If the son disappoints me, I can call his parents.🤣

[Helpmeup in reply to CatsandCars]

Glad you have a shiny new doc! His forties? Barely old enough to drive!!!🤣🤣🤣

[NorasMom in reply to Helpmeup]

lol. My gastro's only a year or two older than my son. I've been referring to him as "Dr. Infant".

[CatsandCars in reply to NorasMom]

Hey, if he's good, at least you won't have to worry about him retiring on you!

[Helpmeup in reply to NorasMom]

😂😂😂

[CatsandCars in reply to Helpmeup]

Thank you! 🤣

[AquaZumbaFan in reply to CatsandCars]

🤣 that is a handy leverage to have! I’ve only had to have a few infusions over the years, but each time it has been a gram ( 1000 mg ) for three days. Usually I have had a taper of 1 to 2 weeks afterwards.

[CatsandCars in reply to AquaZumbaFan]

Yes, it is! 😁So your doctor gives you what I consider the "normal" three days, but then your taper is pretty long. It's interesting how it varies.

[AquaZumbaFan in reply to CatsandCars]

It’s actually been a while but now that I think of it, he used to give me a “ double Medrol pack”, where he would have me take take six the first two days and then five the next two days etc all the way down.. I have had lots of rounds of the oral steroids in the last 23 years but luckily the iv Solu-Medrol probably just two or three times..

[CatsandCars in reply to AquaZumbaFan]

I'm glad it did the trick for you! 😊

[NorasMom]

I consider Solu-Medrol to be a miracle drug, but don't be too disappointed (or scared!) if some of your symptoms stick around for a while. The steroids will reduce your current flare, but it might still take some time for you to really recover to a new normal.

[MSFlea in reply to NorasMom]

I'm trying to keep an open mind about what my new normal will be. As long as it is better, in any way, than how I have been, perhaps being able to drive again, will be awesome. Right now I'm too dizzy to drive, and hubby has to take me everywhere. I know he wants to be in the important appointments with me, but I want to be able to take my Teens places again, and go to the store, and all that jazz. But, even if I can't, if my new normal prevents me, even if I'm only a tiny bit better, I'll be happy and thankful.

[CV97]

Hey MSFlea ! I take Kesimpta. It's easy-peasy! The hardest part is remembering to take it out of the fridge to warm up a little bit before injecting.

You'll probably get set up with Alongside Kesimpta, their patient support program. They will have a nurse check in on you for a while & the program also helps with copay assistance, depending on your insurance/circumstances.

I'm pretty sure the assistance program can also provide a demo injector for you to practice with beforehand. I did not get one, as I felt I could handle it after watching some videos. I also did not have a nurse show me how to do it (but I started in April 2021, so covid protocols were in place then).

Be sure to ask your doctor whether you need to take the monthly doses every 4 weeks (28 days) or once a month. This will determine how they write the prescription and what your insurance will cover (every 28 days is 13 injections a year).

Lots of people take it on the same date every month. Others take it every 4 weeks. For example, My prescription is written for every 28 days, so I can always take it on a Friday night. I used my phone calendar to set up a recurring event so it's easier to track. My doctor and I decided this is best for me so I don't have to worry about side effects interfering with work.

Happy to share more about my experience with the DMT if it helps!

[MSFlea in reply to CV97]

Awesome! Thank you for telling me about Alongside! I hope they set me up with that! I'll message my doc to see which regiment I'll be doing, once I see that it has been approved. I already use an auto-injector for Ajovy for my migraines once every 4 weeks, so it should be easy to learn how to do Kesimpta, though I know they go into different areas. I would love to hear more about your experience with it. I'm nervous, and have heard so many conflicting things. I know it is the best bet for me, but there are always worries when starting a new med. My neuro thinks it is the best course of action, and I tend to agree with him. My MS just kept getting worse and I'd do much to stop it in it's tracks. Hence the steroid infusions I'm doing right now.

[CV97 in reply to MSFlea]

I think the Alongside program has some support they can provide if you're encountering issues with insurance approval. Definitely check out this site to see what they can assist with: kesimpta.com/savings-and-su....

Being diagnosed and starting meds is quite a rollercoaster! It sounds like you're great at advocating for yourself, which will help you out so much!

Take a couple days to read through some stuff and get your bearings. I'm happy to chat privately (if you want) & share what my experience with Kesimpta has been like. Just reach out with questions when you're ready.

[Jenjus]

I,too have been prescribed with Kisempta but my doctor told me to look out for the JC virus. Noted in nervous and don't know what to do!

Anyone had problems with this risk??

[MSFlea in reply to Jenjus]

I insisted to my neuro that I get tested for the JC virus right way after reading on here that it was a concern. The doc also tested me for HEP B and C as that can be a concern with Kisempta. Just talk to your neuro, or even you PCM about it. Either should be able to order the tests. My HEP both came back negative already, just waiting on the JCV to come back! Since so many people have it, I'm nervous too! Best of luck to you, friend!!

[Jenjus in reply to MSFlea]

So it's a matter of just getting tested for it?? I'm so shocked my doctor never mentioned this. What a shame 😔I am going to ask to get referred to a MS specialist doctor. I'm so disappointed but thank YOU for the info!!!

[hairbrain4 in reply to Jenjus]

I'm surprised that he told you to watch out for it. I'm wondering how he thought you might do that? I thought that was what we pay them for!

[kdali in reply to MSFlea]

It's normal to have a positive JCV antibody. Most of the world has been exposed to it. The issue is when the level is high and the medication (Tysabri) or medication plus another immune suppressant may put someone at risk for developing a rare condition called PML. For example, my JCV titer was 3 and I was unable to try Tysabri. My next options were/are: Ocrevus, Kesimpta, and Mavenclad.

[CatsandCars in reply to Jenjus]

My understanding of this is that most people have been exposed to the JC virus in their lives, carry it in their body, and have no problems whatsoever unless their immune system becomes too compromised.

Rarely, a drug can lower the immune system enough to cause progressive multifocal encephalopathy (PML) in a small number of people. This is why doctors will monitor your blood work regularly to make sure your immune system is working well enough to continue on the drug. Things like your white blood cell count (which commonly dips below normal on drug therapy but isn't necessarily a cause for concern unless it gets to a certain point) and your immunoglobulin levels (particularly immunoglobulin G) are some of the things they look at.

In any case, I don't think you can "watch out" for the JC virus, since most people have it. It's up to the doctor to monitor you. If you find yourself getting frequent infections, though, you should tell your doctor so they can do blood work.

Maybe you could contact universities to see if you can find an MS specialist there? Looking at your profile, I can see you've had MS for a long time, and it's a shame that you're still anxious abput your symptoms (understandably so) because your doctor doesn't inspire confidence. I wish you the best.

[Frances_B]

There's not much that's good about being diagnosed, apart from at least knowing what's going on with your body - out of limbo-land of not knowing and now able to move forward.

There is one really good thing about the timing though - this free online course will be running again in a month and I strongly recommend you sign up for it and do it. It goes for 6 weeks and will give you the facts about MS - your hubbie might want to do with with you so you both get the same understanding and can speak the same language about MS.

If you sign up now you will be sent a reminder nearer the start date. See the FAQs for more info on it.

ms.mooc.utas.edu.au/

Many people on this forum have done the course (and some more than once as refreshers) and will confirm that it is an outstanding resource - especially for anyone who is newly diagnosed.

.

[MSFlea in reply to Frances_B]

Thank you for the link to the course! I'll definitely check that out! I agree that finally knowing what is going on and being able to set a care plan is about the only good thing about the diagnosis. But, I'm trying my best to keep a positive outlook and do as much research as I can stand to know more. There is another site that newly diagnosed can get a buddy/mentor for 6 weeks, someone who has had MS for a while and can just be there for you and talk about their experience. I'm thinking about doing that. Life is so chaotic right now, I'm waiting till I have a bit more time to try to do it.

[kdali]

Glad you got in early and got things moving! 🎉 I was on Kesimpta a short time and found that it was an easy injection to do at home. The relapse aftermath can be slow, so it may be 3-6mo before you know what you've got.

[Tazmanian]

good luck starting kesimkesimpta I hope everything works out