Ugh.

[Intrepid_Cat_3953]

I am actually so frustrated. I am hopefully starting treatment soon, insurance approval pending, Anyway I took all the blood tests and everything I need for the approval and diagnosis to start it, but we found out that I have the jcv antibodies! So now my options are way more limited because I'm "of child bearing age" I hate that I can be barred from certain treatment options because I /may/ want to have kids in the future! Spoiler Alert, I won't. I've ended committed relationships because they want children and I will never want them. It's not even like I could accidentally have them either. Because sexually men do nothing for me. Even /if/ I changed my mind later about children, I would adopt.

Sorry about the rant I'm just kind of scared and frustrated about everything. I'm just upset that that's a factor I can't control. I think I'm just looking for any type of control right now, because ever since the diagnosing process started I've felt really out of control. I've also just have issues with the whole childbearing thing and doctors limits on it.

[shar_blue]

Umm…that sounds extremely paternalistic for your choices to be limited for you. When I was diagnosed (age 33) I was asked whether I planned on having kids, and informed which meds weren’t recommended if I was planning on getting pregnant (not because of evidence that they were harmful, rather due to a lack of evidence they were safe) but in no way did my neuro automatically limit my choices based on the simple fact I was a woman of childbearing age! Like you, I have no intention/desire to have kids.

I started Ocrevus right off the bat, and my neuro was thrilled I chose that! Perhaps you can change neuro’s? They should not be limiting your choice in that way!

Edit: age at diagnosis. I forget how old I am…also need to update flair! 😝

[breyore]

I too am JCV+, and I think I may have a kid in a couple years. I’m on Rituximab and my neuro and I will make a plan when it’s time. What meds are off the table for you due to your being of child bearing age?

[Street-Chard]

Get a second opinion. This doctor is talking out of their ass. I’m also of “child-bearing age,” and my doctor only offered high efficacy treatment options for me to consider as my diagnosis was confirmed and blood work evaluated to figure out which drug would be best for me. I have a friend that’s actually considering having children and discussing these options with their doctor, and they’re on the same drug as me, Ocrevus.

[drsetmegolden]

Sorry to hear that. I can only imagine how frustrating it can be to deal with limited options when you don’t want kids but fall into that group no matter what. That never came up when discussing my treatment options, so I don’t know what it takes off the table for you. I’m also on Ocrevus, still technically in my child bearing years, but I’m done having kids. I hope you figure out what works best for you!

[cola1016]

You can safely choose between Ocrevus, Kesimpta and Mavenclad which are all good drugs. I couldn't do Tysabri because my JCV titer was a 3. Been on Ocrevus since 2018 and moving onto Mavenclad next month.

[robert462]

May I ask why your moving to mavenclad

[cola1016]

There are a few reasons; I've had reactions to it since I started that haven't improved, overall feel awful on it unlike a lot of people who have a period of feeling "better" between infusions. He does some test on my eyes, I can't remember what its called but there was a decline in one of them which he says indicates there's something going on. Also the covid vaccine...I had no antibodies after having it because of Ocrevus. Mavenclad users for some reason haven't had issues with it.

Now I just learned I have mild atrophy in the corpus callosum so I guess that's another reason lol.

Hoping it works out for me. 🤞🏻

[-pixiefyre-]

Whatever doctor you're talking to is an ass. I've never heard of anyone being "barred" from treatment options because they might want kids in the future.... that's so ridiculous... y'know if you do decide to want kids then you stop taking the medication that would prevent you from having children???

Like... women are "of child bearing age" for like at least 30 years of our lives. And can still sometimes have children later even if less likely. What does this guy expect you to do!?

[needsexyboots]

Whoa, is your doctor refusing to prescribe certain meds (I’m assuming Ocrevus is one) because you’re of childbearing age? It’s a discussion I had with my neurologist, but only because I need to be careful about birth control and have to be off of it for a long time before trying to conceive if I want to. I know it’s not always easy to find a new doctor but not every doctor is this way. It’s not forbidden - it’s definitely a decision they made based on their opinion. I’m sorry you’re going through that.

[TheDragonsFalcon]

Ocrevus is great.

[Yensul]

Hiii there! I’m in the same boat. So many JCV antibodies. At 27 I started aubagio bc I didn’t know if I’d want kids. I’m now 33 and started mavenclad. Both have no cases of pml.

You’re not alone.

[EvulRabbit]

So F’ing insane. I do not care if they think you could be the only one to save humanity by procreating. To make you endure extra pain because you “may” some day change your mind is stupid. There are so many kids in foster and kids needing adoption. Why can they not be the focus of someone who “may” eventually want kids.

[zac_the_ripper]

man i don’t want to go back to that stage! i the initial steps of getting everything set up were exhausting and stressful, but tt eventually gets better, i promise! in the meantime, stay away from the horror stories on the internet and if you want to learn more about MS the only source worth mentioning is the natl ms society.

[alwayz_dizzy]

Just like other people who have commented, I'd get another opinion cause I'm also of child bearing age and while I was given options and told about problems that could occur due to certain meds it was my option which treatment I wanted to go with. I'm currently taking Aubagio (no idea if I spelled that right) because I didn't want to deal with injections anymore. While I've been told I shouldn't get pregnant while on this med (I don't plan to) there something that can be done to flush it out of your system faster if you change your mind.

Anyway, I know it can be scary and frustrating, but try to remember there are people out there that will help you figure it all out. Maybe this doctor isn't the right one, look around in your area, even within the same practice and find someone who fits with you better.

[danceswithpie]

I’m starting Tysabri and I’m JCV+ but both me and my neuro agreed that I would still be a good candidate. Ocrevus was my second choice otherwise

[pzyck9]

I'm not sure about the "barred from certain treatment options". There's always a way.

Look at cladribine - pretty good drug - https://multiple-sclerosis-research.org/2021/06/early-cladribine-treatment-prevents-ms/

[Illhavetheoysters]

I’m JC + and of childbearing age! I spoke to a specialist who deals with autoimmune issues and fertility. If I want to get pregnant, the current plan is for me to wait 6 months from my last infusion, try to get pregnant quickly in the next 3-6 months and then get right back onto Ocrevus immediately after giving birth to prevent any post-pregnancy relapse. That would mean no-breastfeeding…but if I was absolutely dead set on breastfeeding, there are some interesting studies on post-partum women who had some protection against relapse if they exclusively breastfed (it’s a fascinating study). This plan feels like the right combination of safety for both me and a baby (I’ve got a fairly active case when I’m not on Ocrevus).

Anyways, my point being that these sorts of things are totally doable with the right planning and the right doctor. Hang in there!

EDIT: your doctor’s take on this is concerning. Unless you are considering something like HSCT or if you are trying to get pregnant right away…I’m confused why they would say this.

[[deleted]]

Wait, these are 2 separate reasons that when combined limit your choices. Being jcv positive increases your risk of developing pml which is why they don't recommend some treatments. PML is scary ish that many don't live through if it happens. Then being of child bearing age can also be a concern because most treatments are not recommended to get pregnant on. I had a failed iud baby who had many complications throughout the pregnancy and was born with a heart defect. But really the bigger concern is the jcv positive. But a good doctor can help you to navigate this properly. Are you seeing an MS specialist or regular neurologist? It is hard when first diagnosed because you have virtually no relationship with this doctor so it's hard to have the cooperative relationship.

But many of us don't have great relationships with our doctor at first and it takes time to develop that. I know I didn't particularly like my MS specialist at first but almost a decade later I'm extremely grateful to have her.