I read all the post here everyday so uplifting. I Was wondering if anyone has done Lemtrada I had my 1st infusion in Jan. 2016 go for my 2nd Jan 2017 my walking is very bad I use a rollator all the time. My legs got worse about 3 months after my first dose I have a lesion on my spine none on brain. Dr. said it would take a few months for the med. to start working. I am just scared that the 2nd inf. might put me in a wheelchair.

34 Replies

  • REDLIPS44 , How did you do with the first 5 days of Lemtrada? After you got over the initial infusion period, how did you feel? How have you been during this past year? I ask because I had decided on Lemtrada and it had been ordered and I had been approved then my neuro pulled the order before it started because he felt I was too old and the risks were too great. We still may do it but he is not ready.

  • Well I am 53 years old iPad Ms for 17 years I did good with no side effects but in the fourth month 4/3 month my legs just got very weak so now I use a Rollator all the time I know other people have had different experiences and the purpose of this medicine is to stop the progression not to fix the damage has already been done and I know not too many people have done around 2 since this medicine at 7 a.m. good luck to you if you do have it

  • I'm 57 & recently did my 1st 1 month course of cladribine. It was easy to tolerate. Although off-label now (I took injections), oral drug should be approved soon. Safer than other PIRTs & pretty effective. Check it out: multiple-sclerosis-research...

  • I've read that the pulsed immune reconstitution therapies like lemtrada take 2 years before the full effects are seen. See here: multiple-sclerosis-research...

  • thank you

  • tnolan2006 you do understand that the link you sent is to a blog, which is just an interpretation of what someone else has read and rewrote the way " they " see it?

  • Yes and thank you

  • Yes. Much of the material there is their interpretation of the MS literature. The posters are MS clinicians and researchers based in London. They certainly have some unpopular opinions and many people in the MS community disagree with them. One of their more contentious recent hypotheses is that people with MS have the same disease, not just RRMS which then converts to SPMS, which is different than PPMS which isn't the same as relapsing progressive, completely separate from benign MS. Also, many in the MS community state that MS is primarily a T-cell driven disease, they disagree. They favor treating early with more effective DMTs. Current British guidelines have patients taking 1st line drugs, then waiting for further damage before trying more effective ones.

    I think that they have good material on the pros and cons of the various treatments for MS. An article posted today looks at Lemtrada and autoimmunity. It is only their opinion, but it's based on data from 2 different clinical studies and compares the rebound in B-cell levels after dosing Lemtrada or dosing cladribine. Lemtrada has great efficacy and it sounds like most are really pleased with the treatment. The dosing side effects seem kind of rough, however. Eventually, we'll know more about the relative merits of the various treatments, and more of the DMT's will be generic. Whether alemtuzumab, ocrelizumab, rituximab, HSCT, cladribine, something else or a combo of things is best isn't yet known.

    Ultimately, it's our decision how we treat it, based on what we know now. I can't just let my neurologist decide how I get treated, otherwise he'd have nothing for me. I decided that I was most comfortable taking cladribine, along with simvastatin and high dose biotin. Before cladribine, I took rituximab in a trial. None of this is currently approved on-label for MS. I'm pretty far gone on the disability scale, having my 1 and only CIS in the mid 80s, before anything was available. Just trying to best preserve remaining function.

    A good way to keep up with the literature without the filters of commentators is through Google Scholar alerts.

    I realize that many (most) people don't care about this stuff, hate it and wish it would just go away. Hopefully we'll get to the point where treating MS is just taking a pill, then you're cured. Until then, we depend on our medical care team and ourselves, for better or worse.

  • Thank you good information

  • Thank You tnolan2006 for all your information. :) As your so right much more info is needed on the subject. And it is up to each of us and our Dr's on how to treat us.

    I just needed to make clear to others that it was a blog. Weather good or bad. It's up to the individual to come up with there own conclusion.

    Keep up the good fight tnolan We are in this together. :)

  • Hi, tnolan2006 . I try to keep up with the scientific issues in MS because I know that I am progressing faster than I thought I would, although I have been fighting it every step of the way. I find that, as with most other diseases, research in this area is scant, and I remember when the only thing out there was Copaxone. Now I am on Tecfidera which appears to have prevented any new brain or spinal lesions but I still suffer from relapses. What I am waiting for is a medication or any new modality that will cause remylination. I have heard that THC, the active ingredient in marijuana, causes fat cells to adhere to the nerve cells, which one would think would act the same as myelin since the affected nerve cells are no longer "naked", but I haven't heard any scientific opinions about this or seen any research on it. My neuro says that the evidence that marijuana "helps" with MS is pretty solid, but I think that's just with the pain or other symptoms, not remylination. I have read so many studies and scientific articles that show that off-label use for FDA approved epilepsy medication, for example, can remylinate the nerve cells. Have you heard anything about this issue? Thanks. Sukie

  • I have heard it helps with the pain. Everyone if different just because it worked for them does not mean it will work for you. Keep looking for new meds I know there are some coming up so I wish you luck. We need to take this day by day I know that is easier said then done.

  • I know that Sativex is approved in Europe for muscle stiffness and spasticity. It's a 1:1 mix of THC & CBD from cannabis plants that you spray into your mouth. In some states in US we can grow or buy cannabis that contains various amounts of those cannabinoids. I like the mild euphoria that low amounts of those mixed strains provides. It helps a bit with spasms and cramping and helps to distract the mind. As far as legality goes, my view is as long as you're not hurting anyone else - consenting adults etc., the state should mind its own business. Politicians are the worst when they think they should tell you how you should run your own life.

    I haven't heard anything about THC and remyelination. I don't think that remyelination is that big of a problem compared to stopping the ongoing inflammation in the brain and spinal cord. We see remyelination occur when we go into remission. Once the nerve cells themselves are damaged, they're gone. Once the brain's reserve capacity is gone, then the disability becomes more apparent.

  • Thanks, tnolan. I have tinctures that are mixtures of CBD oil and THC, but I don't the ratio of the mixture nor the strain of the marijuana that produced the THC. I agree with you about the govt. staying out of our private lives. What consenting adults do behind closed doors is their own business as long as they're not hurting anyone. And who told them that they have the right to ban a plant, for goodness' sakes? I'm going to see if I can find Sativex.

  • Hi tnolan 2006. I am look for Cladribine and where to find and import the vial for subcutaneous injection. I understand very well your explanation and agree 100%. And I need a drug who works fast and got pass to blood brain barrier and safe. I understand the BigPharma game. I just want to find my way to better solve my problem. I have 56years old, and took Tecfidera for 2years which cause a huge low white blood cells, red and platelets all together. Big messy.

    I would like more details of where I could acess Cladribine vials for subcutaneous injections.

  • I live in California, USA and my biggest problem was finding a supplier for the drug. I wound up getting it by mail from Avella Speciality Pharmacy, located in Sacramento. The price for 3 vials was about $1400. I think that there are only two manufacturers selling in the US - Mylan & Fresenius Kabi. They didn't seem very familiar with the drug. Mylan said that they had not shipped any so far this year. If you are ordering internationally, maybe you can get some from one of the more reputable Indian pharmacies at a lower cost.

  • Thank you very much for your reply. Few years ago I use to buy medications from Germany, Israel, India, UK,, Jamaica, etc using Canada Drugs. The price was great and the service. But last week after couple years without using I went to the site and it was big deception, charging super high price and per pill. Ridiculous. I found some Indian pharmacy few days ago looking for Ayuverdic products for me. Mylan is a great Pharmaceutical also. I will do my research, but now I have a starting point. It is very important to me. After stopped Tecfidera and waiting for natural recovery I did no want to use Aubagio. I sign up for research in Ocrelizumab, but my Neuro is insisting in Augagio which is not efficient neither pass thru the brain barrier. Prefer begin with Cladribine.

  • And during that two years you need to be exercising regularly, eating appropriately, not smoking and using alcohol in moderation. The exercise though is crucial to retrain muscles that have become atrophied from disuse. REDLIPS44 what are you doing to strengthen those legs? And the new data shows that lemtrada not only reduces or stops progression but also begins to reverse progression in some folks as of the ECTRIMS conference in London in September. This was looking at the 6 and 10 year data on the drug.

  • I have really not been doing anything for my legs (no energy) I do smoke have really really cut back on alcohol and do not really have an appetite (spelling sucks) I do eat in the morning, but after that don't even feel like eating lunch. I just really want to get rid of this rollator I just feel like I am chained to it.

  • I know it's hard getting into a routine when energy levels are so low. I have been there! For years!! But...start slowly and add a bit each time you begin to feel that what you are doing has become easy. It may take weeks or months to be able to see that you are actually exercising but it will come. Studies are confirming that smokers (male or female) progress at a rate of 50% faster than non-smokers (this also applies to non-smokers who live with smokers who smoke around them).

    Just taking your bath towel and holding the two ends in your hands then putting a foot in and straightening the leg and pushing with it can strengthen both arms and legs over time. Then you could graduate to an exercise band that provides some resistance. This is an easy and excellent way to get back into shape without using too much energy.

  • Thank you for your replies. I do know that smoking is bad I guess I use it as my crutch.

    Thanks again and have a great weekend.

  • I'm with you REDLIPS44 lm a smoker also. It's almost a crime to admit it anymore, but lm not quitting. My Dr doesn't even ask anymore hahaha.

  • Mine doesn't either

  • Smoking is seemingly more difficult to quit after even a few months than narcotics are. Not blaming anyone...just bringing it to the fore as a reason some with MS have more problems than others. Most of our docs are more than willing to talk about it and help get you into a smoking cessation program (lots of different ways to approach).

  • CherieMSCN lt is seriously hard to quit smoking. l have 3 times. The last time was so bad that l a swore if l ever started again, that would be it. Never quitting again. I almost had it too. Then 2 things happened, l moved where the ppl upstairs are serious chain smokers, whereas l never was or am. And my insurance wouldn't cover the last 2 wks of patches that l needed to finish off the cycle. Which was because I was on a very long term quitting program. 3wks, 4wks, and 4wks maybe I would of made it, maybe not. Who knows.

    What l do know? Is that l will NEVER go through those nightmares again. :'(

  • Well, I've seen studies that say the addiction is tougher to break than heroin! Why can't this be treated for a week or two "in-patient" drug rehabilitation? Insurance companies should pay for this if it will reduce their costs in the future. But, they won't because, at least I believe, because the make more money treating smoking complications.

  • TOTALLY agree but like some, if you are living in an environment of smokers, that may not be successful. I have worked closely with a few families where a member has MS and the smoking family, when they know the potential harm, agrees to not smoke in the house or around the person with MS and it has improved the PWMS's health and functionality over time. There are ways to make things work. Again...I am not in your shoes as far as smoking is concerned. I have never even tried it! But I have always had trouble being around it.

  • You are walking in those shoes and not I so I cannot judge you or anyone in the battles they take on or choose to avoid. I applaud you for trying and knowing that you could get close.

  • Don't get me wrong here, l DO NOT Condone smoking. l NEVER smoke in the house with my grand children. I will also open the house the day before to air it. I won't smoke in car that doesn't allow it. So on and so forth. I also put the butt in my pockets, it's my habit not anyone else's. But l will say, ppl need to back off us. As it is our choice / habit to make. 'Nough said tyvm :D

  • Amen.

  • Thank you for being so considerate of others when you do smoke. The only reason I mentioned it was to give area of change where one might be able to improve outcome. I did not intend to start people going on the offensive.

  • No offense taken, I am always very aware of my surroundings when I smoke.


  • Hello, Redlips. I have never been on Lemtrada, but when it came out I asked my neuro about it and he did not want to put me on it, but I can't remember why! I do not know of anyone who is on it and I am very curious to know how you feel after your infusions and how it does for your MS. So can you please keep us posted? Thanks! Sukie

  • I had my first infusion last week of Jan. 2016. my legs had gotten very weak before I started. My neuro said it would take 3 months or so for it to really start doing it's job. So my legs are very weak I use a rollator all the time. I did not have any side effects except a small rash on my wrist. which went away. I go back the last week of Jan. 2017 for the 2nd dose. I did have a lesion on my spine but not active. This medicine is meant to stop the progression and if it fixes anything that is just a plus. I did read a lot about it. There are groups on Facebook and I get a lot of information on there. I will keep you posted.

You may also like...