Stressed and scared. Lemtrada or Gilenya????

[Starla]

I was just recently taken off of Aubagio because my liver enzymes were elevated 5 times my baseline. I have to do the 11 day wash out now, which I'm not looking forward to but what I'm really stressed about is my next Med choice. Gilenya or Lemtrada.

The possible side effects scare me. My neuro said she doesn't think being off of Meds is an option for me so I feel pressured to pick between 2 drugs that scare me. I feel like the more research I do the more confused I become.

Ive been on Copaxone. Avonex, Tecfidera and now Aubagio. I've had issues with all of them so this adds to my worry and paranoia. Especially when I read things like "may increase risk of skin cancer". 😖

Anyone have any any advice for me or experiences with either drug that may help me? Thanks in advance.

[Brentorious]

My wife had her first Lemtrada infusion in March. She has done very well on it. We too were scared when reading the safety information, but she had been through Avonex, Rebif, Copaxone, and Tecfidera.

I can tell you that we received some horrific advise about 3 years ago, that she could try going off meds. She had no new lesions for quite some time, but her disability was progressing. In hindsight, we should have been getting more aggressive in her treatment due to the underlying inflammation, rather than going off meds. So please don't make the mistake that we made in going off completely, at least not without a 2nd opinion.

I've posted my wife's experience on another thread here. Take what you read in these forums with a grain of salt. You really have no idea the overall health of the posters and how that may play into their experience with Lemtrada.

My wife was her neurologist's first Lemtrada patient, but she was patient #11 at the infusion center. We talked with the supervising nurse at the infusion center prior, and she was a great source of info on what to expect during and after infusion. It's hard to find info on this topic, so there is another potential source for you.

Good luck with your decision. If you decide to go forward with it, please keep us up to date with how you are doing, if you are up to it.

[Starla]

Thanks

Thanks for your response and advice Brentorious.

My Neurologist hasn't had a patient on Lemtrada, so I would be her first. She said she would get another neurologist who is more familiar with it to help with my case. Im definitely leaning towards it...but still have some questions for my neurologist before the final decision.

Im driving myself crazy with going back and forth!

I'm glad your wife is doing well with Lemtrada and I wish you guys all the best.

[dastardly]

Hi Guys, Starla Im about to start my lemtrada treatment in about 2 months, the blood results came back and I need to have hep A/B shots before I start, so I have to waite a further 2 months after having those before I start lemtrada.

Like you and a lot of others this is a scary time the side effects scare me more than a little but I have a lot of faith in my neurologist.

I stopped tysabri a couple of months ago now and Im starting to get new symptoms right side leg foot has lost a lot of strength and feels all but useless now my right fingers are numb, and my right arm feels like its numb on the inside and full of concrete its hard to lift (rebound from stopping ty)

And now this morning it feels like someone moved all the keys on the computer around I can't find the letters, I have brain fog like you wouldn't believe .

Good luck with your choice of treatment and better days ahead for all of us Craig

[Starla]

Sorry about your symptoms Craig. Hope it gets better soon and the Lemtrada works well for you. MS is such a jerk! Keep us posted on how Lemtrada works for you, if you're up to it.

I keep leaning towards Lemtrada. My psychologist who specializes in ms patients gave me really good advice. Since I'm a "Jump to the worst case scenario" person she suggested that I look at those side effects that scare me and research what would happen if I had that and what sort of treatment would it require, etc.

Then compare both drugs worst case scenarios and basically see which is worse to me or what I'm more comfortable with. Same as when I compare the more common side effects I guess. Hope that rambling made sense.

I have my neuro appointment in 3 weeks so should know by then.

[sardi_g]

I don't want to further tire you with more factors to consider but it's a big decision with big consequences.

If you read Marco's post re brain atrophy and listen to the doctor talk, you will discover that Lemtrada (and perhaps to a lesser extent) fingolimod reduce the rate of this natural aging progression that is unnaturally accelerated in our cases. But Lemtrada can bring the rate closer or even equal to that of person without MS. With atrophy comes a lessening of brain reserve. Those insults our brain managed to take w/ mild or non-existent disability and/or partial/whole recovery (sorry abt this grammar :|) could (and I stress could) come back to haunt us. We may be able to stave of some of this or slow down the inevitable. I have countless lesions in every lobe, plus brain stem and cervical spine. Over 100. And black holes. I've been grimly imagining my future (mitigated w/ some healthy skepticism due to uncertainty factor and some denial). Although there's so little certainty in general I have some hope this disease may be stopped in its tracks. Who knows - with a loss/slowdown of new lesion formation and decelerated atrophy - maybe our bodies can focus on some healing. Who knows.

I spend countless minutes daily looking for things. I hope it's not more than that. Find one as I lose the other. I've emailed people to call my phone when I just can't look anymore. (a watched pot....) It took me waay too long to write this post, besides just filling in missing words. My cognition has really done downhill. Of course other stuff too but what if this is the worst it gets, at least for a while. Who knows. It's so hard to talk MS while having to... ugh forgot the word but when you have to add some conditions to stay closer to truth and farther from misinforming. That's why you gotta ask your doctor. This is an excellent place to gather questions though.

[Jules59]

Just completed my second round of LEMTRADA

I was just recently taken off of Aubagio because my liver enzymes were elevated 5 times my baseline. I have to do the 11 day wash out now, which I'm not looking forward to but what I'm really stressed about is my next Med choice. Gilenya or Lemtrada.

The possible side effects scare me. My neuro said she doesn't think being off of Meds is an option for me so I feel pressured to pick between 2 drugs that scare me. I feel like the more research I do the more confused I become.

Ive been on Copaxone. Avonex, Tecfidera and now Aubagio. I've had issues with all of them so this adds to my worry and paranoia. Especially when I read things like "may increase risk of skin cancer". 😖

Anyone have any any advice for me or experiences with either drug that may help me? Thanks in advance.

Starla,

Like the title says, I completed my second round of LEMTRADA in June. I am 57yo, have had MS for 15 years, and am considered to be SPMS (although my neuro says that once RRMS, always RRMS). I researched LEMTRADA for quite a while before it came on the market (when it was CAMPATH) and could hardly wait until it was approved so I could take it. My neuro was the first in the southeast to infuse patients and he is particularly educated in all the latest greatest DMTs that come on the market and we had discussed it at length. The literature that the drug company gives you prior and post infusion is mind blowing! They even periodically send emails with questionnaires to ask you what you know about the side effects.

One of the best things the drug company offers and pays for is a monthly blood draw and urinalyses. You have the option of home health coming to administer the draw, or you can go to a hospital. These monthly tests will alert your neuro of ANY issue that may come up. Those monthly tests will be done for 4 years after the last infusion.

The effectiveness of the drug is now six years out and I believe the numbers are 75-85% of patients have their disease stabilized. No new lesions...

IMO, the risks of any drug are something that you have to consider insofar as the stage of your life and the progression of your disease vs. the drug benefits; i.e., if you are a young mother, you might not want to risk having stem cell replacement despite the complete irradication of your disease.

I don't think LEMTRADA's list of side effects or possible thyroid or skin cancers are really any worse than, say, Tysabri with it's PML/JC Virus risks; however, you may not think so. According to my neuro, should you get either of those cancers, the fact that you are getting the monthly testing means that they would catch it on the front end and treat it quickly.

My neuro was straight with me and told me from the get-go that he was only looking for disease stabilization for me - I probably wasn't going to have any improvements in, say, walking, as others have reported (they haven't had MS as long as I have). At my appt on Sept 2, the Dr. said my leukocyte numbers were low, EXACTLY what he was looking for and that they should repopulate with no disease activating T-cells or B-cells, by Christmastime. My MRI was stable, so I reckon I'm doing as well as could be thought.

I hope this opinion helps a little, but please do the research!

Best wishes and prayers for your better health!

[Starla]

Thanks!

Thank you so much for the advice everyone. I really appreciate it. It doesn't seem as scary when I have you MSer's to talk to. I wish you all the best and I'll keep you posted on my decision.

[Temagami]

Am in a similar boat- been on Gilenya since 2012- no new lesions that I know of but averaging 2 relapses a year. At neuro appt. last spring, after another relapse, he said it could be time to consider Lemtrada. Am now in another relapse- they are sensory and or vertigo with numbness/tingling and sometimes an intense numbness. Anyone know whether to go by the relapse rate or the lesion activity? Already have about 40 lesions and 1 black hole. The lesions appeared in year one and the black hole around year 2. Also, when they say that Lemtrada works best early on in the disease, what is early one as in how many years in? Am between a rock and a hard place mentally- going off of Gilenya can cause a nasty relapse. Open to feedback.

[Goldfinch]

Temagami: "...they say that Lemtrada works best early in the disease...." Well, they say a lot of things, lol. Whoever they are. Exactly the point I was pondering myself.

I'm not sure what "early in the disease" means. I was lucky to be minimally affected right up until I wasn't. I'd been diagnosed Relapsing Remitting (and still am) for fourteen years before going on Lemtrada. However, in my case I received my first Lemtrada infusion at the same time as the worst relapse I have ever experienced was in full swing. Just in time.

For the first time in my life my MS was making me fall over; I couldn't ambulate without using a walker; I started having swallowing difficulties; Forget about multitasking; Cognition went straight down the tubes. One year post-Lemtrada, I'm walking unaided. My balance is better although I still get dizzy when the lights are off, lol. Never had that before. Cognition has returned but I'm not as good as I was pre-diagnosis. Alas, I am not the genius I once was.

But I'm as lucky as I could ever hope for. Lemtrada has let me heal up from my last relapse by keeping additional disease activity at bay. I just have to stay on top of myself to do the rest of the maintenance we all need to and work out when I can, eat healthy, and live life to the fullest extent possible. I must say I don't take anything for granted now.

Good luck to you, Starla. (neat name, by the way)

[sardi_g]

To treat MS early on with a dmt is a truism is it not? I hope all doctors have this viewpoint to treat to NEDA asap with all the dmt's.

Hmm, no new lesions? A relapse involves inflammation so if your lesion count is stable, then something must be happening to the lesions already present. I wonder if you had had an mri during a relapse would you have seen some old lesions 'lighting up' with the contrast images. This is obv a layman's guess but if your doctor suggested lemtrada - and we know that going to a higher tier dmd usually results from breakthrough disease on the current dmd - it's something to think about. Going on lemtrada requires high dose steroids to prevent a reaction to the drug so god forbid you do relapse you will be treated as effectively as possible. Because of the risks you will be required to notice any new symptoms (skin checks for example). You can't just rely on the monthly tests.

Good luck to you and everyone thinking about this big decision.