"Stepping up treatment" from Tysabri to Lemtrada

[Carolinemf]

Hi Everyone,
Never had brain atrophy mentioned before but have been having cognitive issues for years that as a general rule no one has been very concerned about (except me). The way my atophy has progressed in the last 18 months it has been described to me as being similar to aged dementia. Have been scared stiff about the way my brain 'isn't working' for a long while now and now I've had it officially confirmed! Having trouble coping. Sons wedding next weekend because they intend to start a family - be great if I can't remember my Grandkids names. Would rather be in a wheelchair than senile.
I'm not even 50!
Doc says more emphasis is being placed on atrophy recently than before. Lessions traditionally got more attention.
He has strongly recommended i start Lemtrada asap and I had the initial blood tests and ex-rays the same day i saw him. Used the term stepping up treatment. Am unsure why?
I have read some of the posts about atrophy and Lemtrada but would appreciate any feedback.
He wants me to be off Ty for two months prior- this may be normal procedure but i'm concerned about rebound (5yrs Ty)
I live four hrs+away from treatment and would prob be alone (hubby not able to be there) although doc did say that it may be best for me to be admitted . yay!
One of Lemtrada's side effects of primary concern is Thrombocytopenia- my Dad had that and died from it - so i'm genetically predisposed. I saw first hand what he went through and this isn't an appealing prospect. Any one else similar?
I also have an enlarged thyroid.
And on top of all these wonderful things if I do decide to take Lemtrada I'm signing up for monthly blood tests etc for 5 years to replace Ty infusions and taking steroids and probably a cocktail of other meds to cope with all the 'treatable' side effects and because my immune system will be suppressed i better make sure i isolate myself even more to avoid coming in contact with to many germy people.
Doc actually had an emergency occur at mt apt time and apologised profusely about not being able to discuss in more depth at that time and offered to skype at a later date. No hard feelings there- I have always thought highly of him. He gave me a bundle of info and suggested i research and consider carefully.
So that's what i would like to do despite feeling overwhelmed and apprehensive.
My Husband thinks i should start Lemtrada. I asked him what he would do and he said that he would like to remember ME for as long as he could and if this might allow that than he would do it.
While I agree with the sentiment - I'm tired- Ive been dealing with this crap since i was nineteen and i'm 49 now and even as a child i spent a considerable amount of time in hospital. Even if I do lose my marbles maybe that's a easier way to go than feeling ill all the time.
What is the stats regarding improved cognition on Lemtrada anyway?
Sorry everyone about alternating between emotional rants and questions- its a process.
I relly am feeling pretty crappy at the present and would really appreciate all responses and info.
Thanks,

[Goldfinch]

Dear fellow traveler.

Get the Lemtrada. Overall, my neuro's aggressive treatment philosophy is to blame for keeping me employed these l;ast ten years. I was on Tysabri and I believe it bought me time. But nothing stays the same forever, and I had too high a JC virus titer, so he wanted me off of the Tysabri to prevent PML.I'd been on Ty for about seven years and I loved not having the flu like side effects the Avonex always blessed me with.

That said, the Lemtrada has been good to me. Good lab results in the months following since first and second infusion series. I too have cognitive deficits and brain atrophy (mild atrophy, the radiographer said, but hey, mild is a subjective term. Like you, to me any atrophy is a big deal.)

At any rate, reassure yourself that the cognitive deficits typical of MS aren't like that of Alzheimer's or dementia by other causes. They do not impair executive function, usually. My biggest hurdle is processing speed...I can still function quite well; I just take too long compared to others of my demographic, which has been the bane of my employment existence. I am currently trying to figure out what kind of work I can perform and still be considered of some value in society. *sigh*

Hang in there! You're nowhere close to senility, believe me. Your writing is understandable, logical, follows sequential order nicely, and observes decent grammar, spelling, and arrangement, so your executive function appears to still be in order. How's your math? Good luck on your infusions.

[dastardly]

Hi caroline just read your post, hang in there, my neurologist wants me to start Lemtrada aswell but like you I am more than a little worried about the side effects, I have been on Tysabri for 8 months and my neuro doesn't think its helping me while no change in MRI except one lesion appears to be shrinking slightly my symptoms are getting a lot worse so I will follow your post good luck on your decision Craig

[Carolinemf]

Hi Goldfinch and Craig thanks for the responses. I'm sorry I haven't replied before but i've been ill with the flu and am just now up and about again,sort of.
Thats something else that concerns me - since i've been on Tysabri these common bugs that do the rounds have hit me harder and more often and i've lost a tooth from infection and had shingles my asthma is worse,uti's etc etc . And apparently Lemtrada compromises our immune system more than Tysabri.Joy!
I must be weird but my titer levels have gone down.
I have never been on Avonex but Tysabri did make me feel 'off' for a bit.
When doc said "like aged dementia" it was pretty worrying especially as I do feel a bit like the little old person who wanders away from home and has to be collected and returned because they're confused.
But you are right , i do still seem to be able to function- just not quickly , or under pressure, or in crowds, or with more than 1 thing going on at a time. So I am avoiding 'people' more and more because the wrong things seem to come out of my mouth at times, Names, times, events and general info etc get muddled and i realise later my mistake when the fog clears. But I'd already been contradicted like a child or glared at, or looked at as if i'm stupid by the person I was speaking to. I'v always been a bit of a control freak and find this lack of control quite distressing.
I hope this doesn't sound whiny I genuinely felt reassured by your feedback. Especially in regard to the executive function. I have always been a primarily 'logical' person (Mr Spock would be proud) and unfortunately typical of my personality type although I feel empathetic to others i have always struggled a bit with connecting(giving and receiving empathy)so i make a good boss but only have one good friend and focus on my family.

I have been a business owner and boss for 20yrs but find I'm struggling more with my responsibilities and forgetting to meet deadlines etc and staff inadequacies stress me out so much that in recent years i have cut back on the work load to the point where I believe it won't be long till i quit all together. I don't cope with change well and all things tech change regularly. My husband and I have a small farm and some other interests that only require the two of us working together with the occasional help from one of the kids. We can do this at our own pace and is much less stressful. I can probably contribute financially to the family income by focusing on this rather than what i'v done in the past and so be still considered a value in society like you said. I really feel this is important too!! I hope you have some luck with your figuring out too.

In regard to spelling and grammar - thank God for spell check etc
Was always good at maths - but not so much any more- can't seem to remember methods when i need them and what good is a calculator if you can't remember what symbols mean.
Used to recall phone numbers, prices, amounts (any figures)without even writing them down- now i don't even remember a house number 10 minutes after i'm told it.
So thanks for saying i'm understandable and logical- please tell my family that!

Craig I read your post and was going to reply and add my concerns to it but decided to start another one instead.
I would guess you have done the same as me and trolled as many of the posts to do with Lemtrada as you can. And Google'd too. I'm still unsure about the pro's and con's. Still have unanswered questions. Dr kuyler didn't have time . Have wondered though if Lemtrada is now a preferred treatment because it's been around for a while? I am following your post as well and all the best.

The steroids worry me- had them before- really not fun- can i not have them? take smaller doses?maybe up the antihistamines and antibiotics instead?
ITP- Dad died from this!
Have to be off Ty for two months prior- rebound!
Remembering to take- the cocktail of meds, i'm quite sure i'll need to fight the treatable side affects and increase in quantity and severity of infections etc that go with a suppressed immune system for five years.
Does Lemtrada decrease brain atrophy?(not just improve ms overall)
If so -How?
Mri's have showed no new lesions for years- suddenly atrophy a problem. Have others experienced this?
So far my research says most patients don't seem show improvement for about a year. does anyone have some stats ?
And I'm puzzled why the info says Lemtrada is used to treat rrms -but i'm classed as being spms- is it as beneficial for spms patients?
doc said atrophy like mine indicates inflammation and Lemtrada should reduce inflammation. This is a straw i'm grabbing at presently as i'm still sorting through loads of info.
That Mr Spock in me would love some logical statistics to clarify all the general info i have accumulated (and am trying to remember) so far.
I really appreciate the replies so far,and hopefully, look forward to any additional comments and info from anyone.
All the best.

[dastardly]

Hi Caroline Does Lemtrada decrease brain atrophy? the little reading I have done on this is that it does decrease brain atrophy, good news Craig

[Carolinemf]

Thanks Craig,
I haven't come across info that actually states that yet, just improves ms symptoms/condition in general.
But then i have been feeling really unwell and haven't felt up to doing lots of 'homework' so i probably have only skimmed the surface yet.

As well i have to admit i'm a bit in awe and envious of some poster's on here - they seem to be able to sort through and store and pass on info much better than me. Despite (in many ways) having more disabilities to cope with.
I'm really struggling to sort out all the relevant stuff and write it down (can't just remember it).
After the last of my test results come back I'm to skype with dr.
Appreciate you keeping me in the loop.
All the best.

[Carolinemf]

Brain atrophy cog fog- Avonex more effective than Lemtrada?

Hi,
I have just read a study that states that immunosuppressive drugs ie Lemtrada lack substantial efficacy in preventing the development of brain atrophy. Avonex has shown a modest but significant treatment effect on brain atrophy for RRMS patients only. I am SPMS.
Will post a feedback query in "Avonex"as well but would appreciate hearing from any Lemtrada patients in regard to either atrophy or cognitive function while being treated.

Thanks n all the best