Lemtrada and secondary progressive?

[ssusan]

My neuro at MS clinic in Worcester wants me to go on it. We were waiting for it to be approved in November and it was.
At the MS conference in Boston in Sept or Oct. Dr mentioned it as having some success with secondary progressive.

Has anyone seen or heard anything?
~Susan who has secondary progressive

[69Mustang]

Unfortunately it does not seem to work as well in SPMS

I am sorry to have to tell you but I Would still not give up hope. I think the longer you've had MS the less well it works for you.

I was 29 at diagnosis and I went to Germany to get Lem just prior to my 40th birthday. It has worked wonders for me.

There is a blogspot about my journey with Lem and I am happy to share my story.

On woman "Beth" on the blog is 60 and still noticed some marked improvement in her MS after getting Lem in the UK in May. So I don't think it is ever too late. It is less likely to be a cure the older you are.

Take care,
Emma

[fishead]

Unfortunately it does not seem to work as well in SPMS

I am sorry to have to tell you but I Would still not give up hope. I think the longer you've had MS the less well it works for you.

I was wondering if SPMS was one of the types it helped. I suppose you are right, Emma. The longer we have MS the more damage it does, so the less many of these DMD's work.

[Marco]

It may slow, even halt progression, but it doesn't heal or repair existing damage. With MS in a cage your body may be able to perform repair work, but that isn't a direct effect of lemtrada.

[Kimba22]

I was wondering if SPMS was one of the types it helped. I suppose you are right, Emma. The longer we have MS the more damage it does, so the less many of these DMD's work.

The big difference as I understand it from my MS Specialist has to do with how much inflammation is still going on in the CNS. Chemotherapy works on inflammation, caused by active disease activity, which is why Lemtrada is more effective in RRMS.

By SPMS, there is less active disease activity and less chance for repair and recovery. Whatever damage has been done is most likely permanent.

[Jules59]

My neuro concurs with previous responses about SPMS

but even so, he says that if you were first diagnosed as RRMS, you are still going to benefit from the drug; Lemtrada will stop future disease activity, just not so capable of any rehabilitating effects if your disease has become "progressive" and your disability(ies) are not likely to improve--that being said, I believe the brain is a marvelous thing, so hope springs eternal! I start my infusions Jan 5th and I'm SPMS.

[msgijo]

Jules59, how did the infusions go? How are you feeling?
So many questions - yeah I am interested in this drug! A little hesitant (I am also SPMS - just entering into that stage) but I just keep hoping that there is SOMETHING out there to help ...

[Jules59]

REPORT ON LEMTRADA INFUSION

Jules59, how did the infusions go? How are you feeling?
So many questions - yeah I am interested in this drug! A little hesitant (I am also SPMS - just entering into that stage) but I just keep hoping that there is SOMETHING out there to help ...

I ended up taking the LEMTRADA the 26 Jan through 2 February. I had a "disaster day" after the first infusion where I could not stand for any time atall - had to have the paramedics out to pick me up off of the ground. I didn't fall, but just could not stand up and had to sit down on the floor and could not pick myself up and there was nobody else who could, either.

After a day, I was fine but the infusion center made me rent a wheelchair and have a companion come with me (at least on the third day) I missed the 2nd day of course and had to take my last infusion Feb 2nd. I was taking prednisone instead of the Solumedrol - the administrator said that could have been the problem as there had been one other patient who had problems taking the LEMTRADA and taking prednisone instead of Solumedrol.

My infusion center/neuro had all of us take Zyrtec and Zantac two days prior to beginning the infusions and we all have to take Valtrex for 60 days afterward. I had to take the prednisone for two weeks, tapering off the second week. I don't remember if it was on the patient sheet, but I recommend taking the Zyrtec/Zantac (both antihistamines) for at least a few days to a week after the infusions - it ended up helping me - I didn't get a rash, which is the most common side effect, but I did have a huge bruise looking thing on my hand the Saturday after the first week and I don't know why.

Since that time, I have had a lot of fatigue and some weakness. I'm looking for something to mitigate the weakness, which, for me is an inability to walk well or stand for long. If anybody has any ideas for supplements, let me know.

My neuro says to wait 60 days insofar as looking for improvements; in my case I'm just looking to make sure there are no new clinical problems - my current disabilities will probably not change. To not progress any further would be wonderful and if there is any "icing on the cake" by surprise improvements, well, Hallelujah!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[CindyLWho]

I have been DX'd with SPMS and have questions ... is anybody with SPMS still around/on this thread?

[msgijo]

Jules59

Thanks for the update. I appreciate you taking the time and effort to reply . I can imagine that things are still kinda ?hectic? trying to keep up with any new symptoms (or lack thereof) and dealing with the side effects that Lemtrada causes.
And how scary it must have been on your 'disaster day' . That took some real courage to carry on with the treatment after that.

I am currently getting the runaround in getting into the nearest MS Clinic. And my neuro wont even talk about this treatment - that is why he offered a referral to the MS clinic.

[msgijo]

FINALLY- Good news. I just got a call to schedule an appointment with the MS clinic .

The earliest is the 10th of next month, but hey, after chasing this for the last month and a half I will take it, and be glad to have it. Now on to the next hurdle - getting on either Lemtrada or Ty. But for right this minute I am happy

[msgijo]

Well, it seems that my "condition is not sever enough to consider 'heavy hitters' at this time" .

My appointment at the MS Clinic with a real MS specialist was great (I praised the doctor and her staff in another post). But since I "look so good for a 20+ year dx" she just didn't feel that any changes to my DMD was warranted.

I REALLY hate that phrase ...

[lindaincolorado]

Jules59

Hey Jules59
Please let us know how you are ? Hopefully
Thanks

[Jules59]

Hey Jules59
Please let us know how you are ? Hopefully
Thanks

Sorry that it has taken me so long to respond with an update post-Lemtrada. My daughter is a senior in high school and with all of the college applications/auditions and scholarship applications, my part-time job, etc., just NO TIME! At least I can still type!

I had a neuro appt. 20 March which was about 60 days post infusion. My biggest complaint is the change in flare-up symptoms that I had pre-Lemtrada - if I got a UTI or other infection, my typical symptoms would be pain, lots and lots of numbness in my left side - but nowadays, it's weakness - coming on at a moment's notice and making it so I cannot stand or walk. If I lie down/take a nap, it will usually go away in about 6 hours or so, but it will persist until the infection is gone. I also am SO fatigued. My family got sick with colds and although I didn't get the cold, I had this miserable weakness and fatigue for two weeks, never predictable when it would overtake me. Because I am SPMS, I know I'm probably not going to see much in symptom improvement, but I have noticed a small amount of improvement in bladder retention/urgency. Dr. says for me (the not-your-normal-MS-patient) to wait until summer and see if I have any more improvements, but he does think it may have done the trick to stop the progression so far. And that's the news from Lake Wobegone...:

[Angelea]

Lemtrada and PPMS?

Well it's weird. I was dx RRMS in 1995 then SPMS in 2003 but at my last appt my Dr put Primary Progressive MS in my file and wants me to take Lemtrada. All the research I've done says it's for relapsing forms of MS. So I have to decide if I want to go for it.

I haven't had any relapses recently but I did have a big exacerbation about a year ago but since then I've just been progressing steadily. I didn't have any active lesions on my last brain MRI but I just had a lumbar MRI because of bad pain in my hip with shooting pain all down my leg, no results yet.

I would love any input you guys might have. Thanks!