Last reply 3 weeks ago
My sincere apologies and change in meds

I’m aware I ramble on and on and……..

Can I please, please apologise for not responding to anyone I should have had on here.

Since my diagnosis in 2011 I’ve gotten married, lost a child at stillbirth @ 37 weeks and after 7 years of trying, through IVF, have a beautiful 19 month old boy.

Hectic? Yeah do you reckon.

I’ve been on Tysabri since March 2011 and it’s great.
Last relapse was December 2010.

I work, coz once a workaholic, always……
Although only 2 hours a day Mon-Fri

For those who’ll understand the terminology here, they can not detect, in my case with being JC virus since 2014 or 5 and treatment blah, PML via an MRI scan.
Subsequently, upon trustworthy recommendation, I’m having to change my treatment.

This involves another lumbar puncture, :'(

Has anyone had to change meds for similar reasons?
I’m a little worried, not a worrier by any means normally, because Tysabri has been good to me and as mad as it sounds, I’ll miss that potential deadly drug.

Look forward to hearing from anyone, doesn’t have to be directly related.

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grandma
4 months ago

I’ve just been changed (6mths ago) from Avonex to Tecfidera after 23 years on Avonex. They are thinking rrms is becoming spms, but I was told this would happen in 10-15 years and it took 23 so not complaining. Wasn’t on the site all those years ago, but I am sure no apology is necessary. Changing medication is daunting, but we should be grateful that there is a coice these days. Not so 25 years ago when I was diagnosed hence the Avonex, it was the first drug for rrms, and it still used today. Don’t stress about it, the neurologists tend to know what their doing and the ms nurses are brilliant.😍


dvtrv
4 months ago

Why thank you.
On a sarcastic level thank you for mentioning SPMS that cheered my right up. He he!!!

See, I do still have my humour.

I 100% completely agree, all the nurses etc a Devine.

Thanks for your response.


stumbler
4 months ago

@dvtrv , wow, you have been on an emotional rollercoaster, but it’s good to hear you finished the ride on a positive.

I understand the risks of PML associated with Tysabri. Obviously that risk was approaching dangerous levels, hence the treatment review.

There does seem to be a risk of a “Tysabri rebound”, during the required washout period (http://multiple-sclerosis-research.blogspot.com/2013/09/ms-returns-after-you-stop-taking.html) .

There is a discussion of this possibility here:-

https://shift.ms/forums/topic/tysabri-rebound-effect


dvtrv
4 months ago

Hi @stumbler, nice id btw.

I’ve got a good team of Specialists, doctors and nurses with me. They feel like a family of sorts, the nice kind, he he.

I just talked to a nurse and we discussed the “carry-over” has been reported of PML and hence why I’ll be needing a Lumbar Puncture whichever I decide to change.

This has gone a long time now because I have many questions, now answered I may say.

Choices;

Gilenya 🙁
Mavenclad
Lemtrada 🙁

& a new one called “Ocrevus” – available in next few months.

There were 3 reports of PML around of the macclesfield, South Manchester and Stockport.

I’ve remain positive all the way through this is who am.

I had dark ginger hair as a kid and wore glasses from age 3.
I say “Being Ginge Maketh the Man”


highlander
4 months ago

Hi @dvtrv,
Nice to read you!
Do you mind if I ask you what hospital you use and can you put in a nice word for me to come over to your hospital?
I was dxd in December last Christmas and my appointment for treatment has been booked on the 5th December this year.
Just having a moan really,
Glad you’ve come back to the fold as such, keep being sarcastic !
Keep smiling


dvtrv
4 months ago

Hey there Conner McLoed.

I live in south Mancester and I’m currently visiting Salford every 8 weeks for an infusion, 72 so far.

Wow!! I was diagnosed January 18th 2011 and got started on Tysabri 1st March 2011.

They say I had Rapid RRMS and thus got me on my miracle drug.
Well :..( it was until they appear to be unable to detect PML via an MRI, certainly in my case anyhoot.

You just try, many have tried, to take that smile offa ma fase!!!
(Purposely used incorrect spelling to obtain FULL effect.)

Answer? Think you know the answer.

Kiss kiss (no harm intended, tiz purely for comedic reasons)


highlander
4 months ago

@dvtrv,
Not bad for a first attempt!
Read @rotherhamdaves post about happy Yorkshire day.
@stumbler had to post a new version of the Rosetta stone so we could understand it.
Keep smiling


dvtrv
4 months ago

Nah you two are clearly crazier the me.
I’ve no idea what on earth you’re on about.

Stay crazy 😜


dvtrv
3 weeks ago

Hi anyone interested.

I may be supposed to update a thread or be in the middle of a hat on here.

Normally I’d personally find that rude but, I’ve got MS n I’m too tired right now for the following reasons.

The reason is why I’m posting here;

I came off Tysabri ready to go on to Mavenclad (other threads will most likely say otherwise, hard choice u see) 10 weeks tomorrow.
😧

I’m getting rather lethargic now, it’s usually my legs that complain, hard to explain.

(Interrupting meself here)
******************************
I’m posting this as I hope it will help others either now or in the future.
******************************

I discovered today that 13 weeks is the aim of the appropriate people, with regards to someone coming off Tysabri and that it could be another 2 weeks (12) before new drugs start.

I’m so, SO glad I don’t worry, dwell on things it think hardly.

I’ll update you on how I get on, well that’s my plan anyway

Thank you for reading 💋


stumbler
3 weeks ago

@dvtrv , there’s always someone interested.

So, no Tysabri rebound activity then?


dvtrv
3 weeks ago

Not sure I know what that is @stumbler


dvtrv
3 weeks ago

Was just reading about that and, er, no don’t think so although my legs ain’t feeling Tysabried right now.


highlander
3 weeks ago

@dvrtv
I wish you happy trails.
Keep smiling.


dvtrv
3 weeks ago

@rambler

Well how embarrassing.

It’s amazing what u see when you look, a bit like it’s amazing what u hear……

Apologies, I tend not, or didn’t tend to look into MS much coz I tend to take the ignorant approach, deal with when it happens approach n’ll.

Interesting read I just had on;
https://multiplesclerosis.net/living-with-ms/immune-reconstitution-the-rebound-effect-of-tysabri/comment-page-1/#comments


highlander
3 weeks ago

@dvtrv even.
Still can’t read


dvtrv
3 weeks ago

Aah @highlander Me old mucker.
I’m always smiling me pal.

I’m sure I’ll be ok but ya can’t help having the odd subconscious thought sneaking its way in.


dvtrv
3 weeks ago

Who?


stumbler
3 weeks ago

@drvtv , I see you answered your own question, 😉


dvtrv
3 weeks ago

Yes and I thank you for that.

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