If you’re JCV positive what med have you chosen?

[Eva]

Hey there, I’m currently on copaxone as I like the safety profile.
My ms is mild with only sensory symptoms when I’ve had relapses.
As I’m a single parent, I want to remain healthy for a as long as possible.
I’ve been thinking of changing to one of the newer and supposedly more effective drugs but I’m very concerned about the cancer and PML risks.

I’m a nurse so I’m always surrounded by bugs from my workplace. Does that mean that I’m even more susceptible to infections as my immunity will be dampened?

I thought Ocrevus might’ve been a good choice until I read about the increased cancer risks.

So if you're JCV positive, would you stay away from the newer meds due to PML risk and all the other risks?

[Jules A]

Hi Eva,
I have no advice for you but wanted to give this a bump and encourage you to be patient. I know someone will be along with helpful information.

[Temagami]

Am JCV+ and on Ocrevus. I get a mammogram and then ultrasound six months apart. So far, knock on wood, no one has gotten PML on Ocrevus without having had an immunosuppressant prior. Got the flu shot and hope for the best.

[oceanpride]

Down in the medications and treatment forams there is a lot of debate about that stuff. I’ve been on Ocrevus and would be uncomfortable around germs constantly. I have found colds and flu hard to shake while on it , although some are hard to shake anyway. It might be doable. I’m mean I was at the hospital for six hours on Monday so I’m sure I came in contact with some. We can’t take these drugs then go live in a plastic bubble. Lots to think about. I’m probably not much help but didn’t want you to think no one was paying attention. Every body is no doubt a little busier than usual this time of the year. I’m sure you’ll get more responses after a bit.

[MyGirlsMom]

Decisions?

Choosing to take a DMT and which one is very, very difficult. I took Copaxone for about 7 years and eventually ran out of injections sites. I have not taken anything for the past couple of years and have had a couple flares this year. (But also had some while in Copaxone.)

I too am JC positive and thus, I am too afraid of the higher level and higher risk medication choices. MS is tough on its own and for me the risk of anything else right now is just more than I can handle. My neuro wants me to consider Aubagio, but I haven’t gotten to that point yet and actually might not.

I wish I had the magic answer for you...but know you are doing the right thing...gathering info to make the best decision for you at this time. It is all so hard...and people that don’t have MS can easily tell you what you “should” do. There is no right or wrong answer...you will make the right choice, for you...when you are ready. Hang in there!!

[kmallory1]

I was on Avonex for 5 years, then Tysabri for 4 years until I tested positive for JCV. I spent 2 years without a DMT, then took Tecfidera for a couple of years. I’m on Ocrevus now.

At 68 years old, PPMS, in a power wheelchair, my risk tolerance is probably greater than yours.

I can’t tell whether any of the meds slowed my MS down, but none of them had any side effects for me except Avonex. The flu-like symptoms made me miserable for 3 days a week. I have not seen any increase in infections.

Good luck with your decision.

[ru4cats]

Hey there, I’m currently on copaxone as I like the safety profile.
My ms is mild with only sensory symptoms when I’ve had relapses.
As I’m a single parent, I want to remain healthy for a as long as possible.
I’ve been thinking of changing to one of the newer and supposedly more effective drugs but I’m very concerned about the cancer and PML risks.

I’m a nurse so I’m always surrounded by bugs from my workplace. Does that mean that I’m even more susceptible to infections as my immunity will be dampened?

I thought Ocrevus might’ve been a good choice until I read about the increased cancer risks.

So if you're JCV positive, would you stay away from the newer meds due to PML risk and all the other risks?

Eva,

Since you are concerned about PML, I assume you have tested positive. If you are negative, the risk of developing PML is nonexistent.

As a user of Tysabri for over 8 years, I have continued to investigate the drug to learn as much as I can.

Much has been learned since Tysabri was found to raise the risk of developing PML. Unfortunately, it seems as if all the tier 1 DMD's have risks. Unfortunately, the greater rewards with all the best DMD's bring greater risks.

This is an excellent video by a MS physician that talks about risks with Tysabri.

https://www.youtube.com/watch?v=nMVm...ature=youtu.be

In the past few years, many Tysabri users who are JC+ have refused to leave the drug that has given them their life back. Research has shown that moving to an extended infusion schedule reduces the risk by up to 94%! Although I am JC- with over 100 infusions under my belt, I have moved to an extended schedule (now once every 49 days) just because it's been shown that less Tysabri in the system doesn't reduce the drug's efficacy. Here is the information with a link to the study:

https://markets.businessinsider.com/...rug-1014956604

By lowering the amount of Tysabri in one's system, the immune system is able to "recover" a bit, allowing for natural protection to return.

I encourage everyone to keep an open mind when it comes to the new MS drugs. Risk versus reward must always be considered, but perhaps there are ways to mitigate the risks. I know...it's easy for me since I am negative. However, Tysabri has been such a wonderful drug for me, and I am thrilled to know if I seroconvert, I can still remain on my drug of choice.

Good luck in whatever choice you make.

[Marco]

I am JCV+ and have been on rituximab (rituxan, the precursor to Ocrelizumab), for a couple of years and love it. I am stable on the medication and have only two easy infusions per year.

I was given the opportunity to switch to ocrevus, but declined because there isn't enough post-marketing data available. I too was concerned about the increased cancer risks.

The more potent drugs do tend to have the potential for greater risks, but also for much greater rewards. Much has changed in the last 10 years, but more patients are reaching a state of NEDA (no evidence of disease progression) on the newer medications. No flare ups, no new lesions and no increase in disability. Hallelujah!

Today, more neurologists and patients are opting to try and proactively prevent damage instead of being reactive once the damage has been done.

Choosing a drug is so personal, but it seems like you are asking all the right questions. I've seen a number of neurologists that absolutely refused to prescribe Tysabri to a JCV+ patient. So your neurologist should definitely be involved in your decision making process.

I wish you well...

[REG53]

Hello Eva, I am jcv+ and I'm on Ocrevus.

Wishing you all the best.

[reasonable]

Hey there, I’m currently on copaxone as I like the safety profile.
My ms is mild with only sensory symptoms when I’ve had relapses.
As I’m a single parent, I want to remain healthy for a as long as possible.
I’ve been thinking of changing to one of the newer and supposedly more effective drugs but I’m very concerned about the cancer and PML risks.

I’m a nurse so I’m always surrounded by bugs from my workplace. Does that mean that I’m even more susceptible to infections as my immunity will be dampened?

I thought Ocrevus might’ve been a good choice until I read about the increased cancer risks.

So if you're JCV positive, would you stay away from the newer meds due to PML risk and all the other risks?

Hi Eva

Mid 50's now also JV +. Was nothing several years, then also Copaxone also several years. Then Gilenya, Tysabri (2) years, now Octrevus.

Copaxone (side effect free), Gilenya (liver intolerance), Tysabri (side effect free), Ocrevus (maybe fatigue otherwise side effect free).

In Au Professor George Jelinek is starting to get more traction with his diet worth following up as the feedback after decades seems very positive. Otherwise Copaxone is great but may not stop long term progression after 47yrs Ocrevus may delay longer would not worry infections, cancer is a risk.

Personally if u can I would follow up with one of the diet and lifestyle retreats for Jelinek after that consider Ocrevus. If your job involved walking consider longer term what your fall-back position is / or what career change would be possible.


Regards

[MS TOO]

I am also JCV+ and was on copaxone for about 6 years before switching to Tecfedera. Unfortunately my white blood cell count tanked after about 18 months so it was back to the shots. When I went back to the shots, the generic copaxone, glatopa, was approved so I have been on it for about 4 years or so. Today I met with my neuro and he asked if I wanted to try the larger dosage injections which I would only take 3 days a week, of course I said yes! He wasn't sure if the pharmacy at my HMO carried it yet but he sent in the request and asked for a response from the pharmacy about availability, I sure hope it is. I plan to stay with Copaxone/Glatopa because I have tolerated it well for over 10 years combined. I wish you the best in your search for answers!

[Jennaly16]

Morning!
I am JC + and I am on Tysabri. I've only been on since May and became JC + in July. My neuro takes blood sample before every infusion (right now every 4 weeks) and said that when i get close to 1.0 (currently .39) he would be discuss switching me off Tysabri however I was still low risk for PML until then. I have been in the .39 range since becoming +.
I did some research before starting Tysabri and it sounded like the least side effect medication that a lot of people enjoy being on. I also learned that prior to Tysabri i had more lesions forming however has stopped since.
Tysabri is my only experience with a MS drug so it's all i can speak on. One draw back has been that the week i'm due for my infusion i do become very tired/drained but i could still be adjusting!
Good luck on your journey

[MyGirlsMom]

This is a great thread and I appreciate everyone’s responses! I am still not doing to well and now needing a cane most of the time (weakness and fatigue in left leg). I am getting a lot of pressure or encouragement from my doctors to get on a DMT....but I tend not to like drugs and have been resisting. That said, I am now soncisdering options.

My neuro is wanting me to go on Aubagio but I really don’t like what I read. I have been thinking about Rituximab and asked my insurance company if they would cover that....they are researching. I am JC+ so that does limit my options.

I just can’t seem to get my arms around whether it is better to stay with the risks of MS or add in a higher possiblity of additional issues.

Sometimes this is all too much more than I can handle....

[ru4cats]

Rituximab would be a far better choice than Aubagio. Recent research has shown that Rituximab and Ocrevus are basically equal in effectiveness. Aubagio, not so much. Both have shown improvement in EDSS scores after use. If you can get Rituximab, I'd give it a go. Good luck.

[Myoak]

Hi Eva

Mid 50's now also JV +. Was nothing several years, then also Copaxone also several years. Then Gilenya, Tysabri (2) years, now Ocrevus.

Copaxone (side effect free), Gilenya (liver intolerance), Tysabri (side effect free), Ocrevus (maybe fatigue otherwise side effect free).

I love this post by reasonable! It is clear, concise, and accurate. And, I think the majority, not all but the majority, of those reading would likely have similar experiences with what was mentioned... the only exception being the majority may not experience liver intolerance with Gilenya. But that said, Gilenya is definitely not a DMT I would choose; the reasons are myriad. Many do take it and if they are doing well, great! The other observations were spot on, IMO.

Eva, we really need to put the supposed cancer risk with Ocrevus in perspective. There is no real world data establishing a cancer risk with Ocrevus. It is entirely possible that there is no increased risk. In trials, there were more cases of cancer in those taking Ocrevus, however, we need more data to confirm that was not just an aberration because it could have been. Plus, what if the increased cancer risk turns out to be 1 in 1000? Would it make sense to take a less effective MS DMT and suffer accelerated MS progression because of a possible 1 in 1000 cancer risk when the cancer risk in the general population is 1 in 3? Simply put, we must not ignore a very good MS DMT because of a possible cancer risk which has not been established.

MGM, you said you are too afraid of the higher level and higher risk meds. Did you read the thread, "Great results so far on Tysabri" under Tysabri in the MEDICATIONS & TREATMENTS forum? It is quite telling on just how effective that particular higher risk med is for many, including a bunch here... ru4cats, pennstater, and Linda in Colorado to name a few. MGM, please keep in mind that MS meds are not the only risk to your well-being... MS progression can be very harmful and actually is more of a risk than are the MS meds, which is why they got FDA approval. More benefit than risk.


I'm sure there are responders to each of the approved DMTs. Choosing one for my household has been largely based on comparing trial results, what I have observed over decades, experiences related by others, and lastly & leastly by the treating neuro's opinion. Why relegate professional opinion to last place? Because IMO, neuros sometimes have conflicting interests.

For example, Marco mentioned that some neuros refuse to prescribe Tysabri for anyone JCV+. Well, someone who is JCV+ requires more attention and monitoring so... even though the person may very well be living largely MS free on Tysabri… the neuro will spend less time and thought if he just tells them it is too risky and takes them off it. Even though the neuro is quite aware the risk of PML can be massively reduced by extending time between doses.

Believe me, as wonderful and caring as your neuro is, the less attention you require from him/her the better patient you are. Someone on Tysabri requires a good deal more attention if they are JCV+. Thus, some neuros refuse to go there. It isn't too risky for the patient doing well on it, but it is risky for the neuro... and that risk is to the maximum efficiency of the neuro's practice.

IMO, greatest risk is experienced with the lesser effective DMTs such as Aubagio. The risk is of MS progressing, and we know MS is a chronic, progressive disease. Also, most of the lesser effective meds normally have very undesirable, yucky side effects that can make someone ill in a way they would not have been w/o the med. So, MS progresses more on the less effective meds compared to more effective treatments, plus, you feel like crap while it does, and it is possible to acquire real illnesses from taking them, too. Those are mentioned in the prescribing lit. Not good, IMO!

Don't give up! Gather your information and take your best shot. A trained neurologist does the same thing. You know you as well as he/she does, probably better. Choose what best fits you!

I am only expressing my personal opinions. I realize each individual is unique and makes choices as best suited for them. I wish only the best for each!