@A MyMSTeam Member...I left a previous comment but an additional thought occurred to me.

You are doing the proper thing as far as trying to gain as much knowledge about the medication as you possibly can.

Once you have gathered that information, you will have to make a decision. I know all of that is elementary but, I say all of that to say this.

DO NOT, do what your doctor suggests if YOU, are not comfortable with it.

Reading the side effects and possible problems we may have with any of the DMD's we have to choose from they are all, for the lack of a better word, dangerous.

But, Lemtrada, Lemtrada is in a league unto itself. Much like Gilenya, which I took also. Until it about killed me.

I am going to take Lemtrada. But, I don't have much of a choice. I have been on 5 different DMD's and none have worked.

I'm 5 years diagnosed and, when I leave my house it's in a wheelchair.

So, good luck to you. It's a tough decision. But, if you are educated about it, you will make a wise decision.

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A MyMSTea...

@A MyMSTeam Member.... I am waiting on my start date to begin my first round of infusions. I have referred everyone here asking about Lemtrada to a FB group called "Lemtrada for MS treatment". There is a wealth of information to be found there. There are people on there that are currently taking Lemtrada, have taken Lemtrada and, looking for information on Lemtrada.

I learned a great deal from that group. I learned enough to be comfortable with my decision to move forward with the treatment. I will caution you about two things, you will hear miracle stories in there and, you will hear stories from negative Nellie's because they didn't benefit from a miracle. You will know what I'm talking about if you choose to join the group.

I hope this helps.

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A MyMSTea...

Hi @A MyMSTeam Member thank you for your comments and advice. I'm meeting with my nurse next week and she is really good so I'm hoping to get her views on it all. The consultant feels Gilenya is my best option at this stage. I Feel why waste time on something when there is another option that has more long term benefits, like you said going straight to the top. I'll have to wait and gather all the information before I make my final decision. Good luck on your Lemtrada journey I hope it all works out for you.

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A MyMSTea...

I am 10 months post my first round of Lemtrada and here are my thoughts - I have been in a relapse with active lesions, per MRI at 5-6 months and 8-9 months, not ideal but not unexpected either. BUT if not for the MRI, I barely noticed the mild symptom changes, so would never have known. This is at least a 2 year treatment, so you need to be ready for the both the good and the bad that may come along during that time, and not get discouraged when you read how others are jumping up and down and running around the block one month after while you can barely get off the couch. I have actually had a pretty easy time with it - no infusion reactions and very few side effects. I do believe the healthier you are going into the treatment, the easier the recovery is after. I have days where it seems some of my symptoms are better, and others not so much.

With that said, even if I am in the 25ish% that it doesn't work for, I have no regrets about trying it. Why just move on to another med, that if it works, will only slow the MS progression vs the chance to completely stop it? I'd rather just hit it with the big gun. This is a decision that you need to accept and be comfortable with. The success rate is great, and the benefits and long term efficacy are outstanding, but realistically being prepared for either (1) halting the progression but have no symptom improvement or (2) being in the 25ish% of failure (but ready to hang in there for the full treatment) is essential. If it does not work, it does not exclude you from trying the next great thing that might come along (BTW, Ocrelizumab only targets B cells, so will also only slow progression vs stopping it).

As far as safety and side effects/adverse reactions. They really are no different than any other drug out there. Some occurred in higher #s, which is why they are harped on prior to treatment. But there is no other drug that requires you to do monthly blood work to proactively find any of the currently known, and all treatable, side effects that can happen. In my opinion, that makes it a safer option than anything else.

I highly recommend going straight to the top with Lemtrada, but again, you need to be comfortable with the decision and do what is right for you. Gilenya is an OK option (didn't work for me) but if you truly want to go to Lemtrada you may need to do your own advocating if you have a neuro that has not prescribed it yet. Good luck!

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