Last reply 3 years ago
Lets face the music – JCV+ Titre Levels

Hi all,
After a long fight, the hospital has finally agreed to test and report back on our Titre Levels for those who are on Tysabri and JCV+.
I had mine taken on my last infusion so the results won’t be in yet… however after seeing a recent case of PML crop up near by it has really hammered home that I may have a decision to make. So much for really wanting that information! I feel like I was living in blissful ignorance before lol.

Q: What is a high Titre level? Anyone have any info? I have scoured the internet and so far no clear answers… some say over 1.5, some say over 4… and I am at a loss. There is a big difference between those numbers!

Also, what have you been advised by the powers that be? At the mo, due to heart issues that are yet to be looked into, Fingolimod (Gilenya) has been ruled out as it decreases your heart rate a little. So I am stuck with Tysabri or pushing for a drug trial or something even more expensive. And we all know how much the NHS love spending money (I haven’t a chance!).
Any info, pointing in directions, or general moans will be very much appreciated.

Thanks!
Gemma

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stumbler
3 years ago

@slinkygem , I think you need to hear from @jasfromtas . She was faced with this dilemma too and researched the issue, so may know the technical details.

As far as alternatives are concerned, there are Tecfidera, an oral option, or Lemtrada, approved by NICE in August……


slinkygem
3 years ago

Thanks @stumbler, any info would be fab. I can just ask my the Nurse when I am in for my next transfusion, but I think opinion is very split even between the profesionals! Like finding a needle in a haystack is finding a clear cut answer 😀


hannah015
3 years ago

Hi @slinkygem

Unfortunately I don’t know anything about the tysabri however I am currently waiting to start Lemtrada. It’s another infusion treatment (5days first year, 3 days following year and possibly that’s it) might be worth asking your neurologist about it

Take care xx


jasfromtas
3 years ago

Hi Gemma,

OK… So apparently Australia is like 3 weeks behind you guys, not 24 hours (sorry for the delay in replying!!!)

I am not sure if you have your level back by now (and have not read all the shift.ms posts from the last 2 weeks!!)

Yes, I have researched the issue AT LENGTH!! Driven my brain into the ground. Like you say, There does seem to be some variation between what neurologists consider “high” risk – but this seems to very on what the neurologists consider “risk” to each individual case (so is really subjective).

Generally, it seems that anyone with a level below 0.5 is considered at minimal (if any) risk, between 0.5-1 at low risk, 1-1.5 medium risk and 1.5 and above high. People’s levels do not seem to be linear (ie, most people cluster a level between 0.5-1.5, with a few rare outliers with higher levels and a few with lower levels).

I did a bunch of research on this about 18 months ago when my level went from 0.5, to 2.5, to 3.1. I came off Tysabri and onto Gilenya (despite being “high disability risk” and my neurologist suggested I could stay on it – I had only been on Tysabri 12 months, but I did not feel happy staying on Tysabri – I was worrying my life away), and went onto Gilenya. In the past year my EDSS has gone from 4 to 6, so I cannot say Gilenya has worked (for me). I am currently awaiting the (hopefully soon) clearance for Lemtrada in Australia.

Hope you are keeping well! Not sure if my rabbitting on helped at all, but there are some good web sites out there that explain it (in not too alien-medico lingo),

xxJas


slinkygem
3 years ago

Hi @jasfromtas
That is amazing thanks. Fingers crossed one day docs will speak to each other and all start singing from the same song book!

Thanks again!
Gemma


us-emma
3 years ago

@jasfromtas,

I had the same experience in 2012- off Ty bc I had been on so long with just a + titer not a specific#. Gilenya started to fail for me within 6 months but my neuro didn’t believe me bc the drug was so new.

By 8 months I was DEMANDING a return to Ty and refusing titers (I was not aware a titer# was now available but it didn’t matter) Ty was the only thing giving me some Quality of Life.

All together my break from Ty was 1 year and 3 months with washouts (which has pretty much fallen out of practice). That time sent my MS back decades from which I never fully recovered.

After 1 year back on Ty I relented any my titer was 2.05 & MD was refusing to authorize future Ty- this was Jan 2014. I took one more dose 14/2/2014 and started Lem 7 April 2014 & have never looked back. The improvements in my function have been nothing short of outstanding.

I hear Australia will start infusing in April- are you on a list for that? I know several people who are (become a member of the closed Lemtrada for MS group on Facebook (just asked to be approved & you will be) and make a general posting asking who is on the list in Australia. People on there are very helpful. I hate FB but this is a useful group. Anything you post there will not repost to your main page- to enable some privacy.

I hope only great things for you & that your path to effective treatment with Lem is a smooth one!

@slinkygem, see if Lem is an option in your area. I know @hannah015 and @tracyd are having trouble with this postal code thing. @brownk hears of their chances tomorrow.

Take care,
Emma

My journey is documented on Lemtrada.blogsot.com

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