@lilbird

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lilbird

so... why not choose Lemtrada?

I'm really just curious to know why those of you who have opted for other treatments passed on Lemtrada? It's starting to look to me like the most logical option & there are certainly many people on this site who strongly advocate it. I guess what I'm asking is, is there something I'm missing at the moment? Does it just come down to the undeniably somewhat terrifying list of SEs that are too much for some people to tackle or are there other factors that I've not yet considered? Any thoughts & opinions welcomed even if you're "not eligible" for treatment I'd love to hear (well read) your thoughts, they're so much easier to process than endless technical & medical jargon for a change :D

Charliegirl

@Charliegirl

I had Lemtrada 4 weeks ago and at this point I sometimes wish I had not had it.... Apparently I have to wait 3 mths for any change.... I want changes now....am inpatient by nature lol....would think really good about trying Lemtrada as its a 5 yr commitment to blood tests every month. ...apparently the Lemtrada is out of my system after a week but causes a whole bunch of other issues...I had no other medication to go on as nothing else is working for me....have had MS for 23 yrs so my disability is noticeable....5 yrs ago I could live with it in the background but now it is in my face....I dont know how long you have had MS ....the trials on people who have MS FOR 5ish years or less seems good but someone like me there hasnt been trials so don't know what is going to happen....good luck with finding what your journey should be for you....am still learning lol

lilbird

@lilbird

Thanks to both of you :) @orlando27 I've had plenty of experience of the medical profession for myself & others over the years, therefore have known from a young age that they're certainly not all to be given blind faith! @charliegirl I am only recently diagnosed. Symptoms of my current relapse are pretty difficult to ignore as the worst affected are my hands & arms. A 5 year commitment to blood tests doesn't sound too bad as a trade off if there is any possibility of "fixing" this problem &/or preventing all manner of other possible nasties. Everything I'm reading suggests the sooner you act after diagnosis the better the possible outcome. Does that mean I could be lucky enough to stop this thing in it's tracks before it does any more damage? That part really does sound tempting.

AndyWhittaker

@AndyWhittaker

Hi, I've just been asked the same question as yours via a PM and this was my reply. I’m just coming up to my 4th week after the 1st infusion. Compared to other people (so I’m told) my infusion went very well with only a very mild rash on my arms on day 5. I think you have to look at our disease pragmatically, meaning that it is gradually destroying your nervous system. The nice thing that happens to us is that we eventually get better but are never fully better again. However, during the good times it’s very easy to forget about the bad times and feel somewhat fraudulent as being classed as an MS sufferer. I particularly feel like that when I visit my Neuro Dr and see all of the very ill people around me. All the time our nervous system is under attack. My MS Nurse said that our disease is like badly spraining your ankle, it bloody hurts the first time you do it but ultimately it gets better. Sprain the same ankle again and it will probably get better but it’ll never be quite the same. Do it yet again and it’ll start to get even worse. What I’m trying to say is that unless we stop our immune system attacking our own body, we will only deteriorate. Lemtrada needs to be given as early after diagnosis before the damage to your body gets too worse. I think this is why they don’t class it as a cure because once the damage is done, it can’t be fully repaired. As far as side-effects go, take a look at the information leaflets for paracetamol, aspirin or any of the DMTs out there. The big advantage of Lemtrada is that you have to have mandatory blood tests once a month for 5 years (they do say 4 years but if you work it out, it’s 5) but at least they do that to catch anything early. There are a few potential nasties but I think in the long run, they aren’t that bad and we may not get them. Just my opinion; I suppose seeing my wife deteriorate over 5 years with cancer tends to focus your mind on mortality and quality of life. We found that we got ”quicker” treatment by rolling up our sleeves and marching round The Christie seeking out the correct department rather than going home and waiting for a letter. Good luck! Andy x

US-Emma

@US-Emma

I had my first Lem dose April 2014 after being diagnosed 10.5 years. Although I treated my MS aggressively every step of the way and had been on Tysabri for 6-7 years at the time of the Lem decision, I was failing to keep up with MS damage. I was home bound due to fatigue and pain and didn't have much hope of life improving. I thought Ty was the best thing out there and was thankful I could still get it, but finally my doc said 'no more' bc my PML risk was just too high. (Insert long story, traveled to Germany, got Lemtrada, for that story see Lemtrada.blogspot.com) 1.5 years later I am in zero pain and have no fatigue, my memory has improved, I have recently been hiking and White Water Rafting. I travel a lot (an ability I lost due to MS) and enjoy an active lifestyle. My husband and I have a running joke- "Today's (fill in blank with activity) is brought to you be Lemtrada" Without my Lem decision I would have no quality of life now- mental nor physical. MS had started to really get me down, and I'm an optimist. I just bought a Tshirt this last trip inscribed "Optimist by Nature" with a nature scene. That pretty much sums up my Lem Life! Beet wishes with your decision, Emma

hollylb10

@hollylb10

I didn't pass on it, I was told it was not suitable for me! I have Relapsing Remitting MS and have had 3 relapses since Christmas, when reading the info I would say I qualify!

Helena

@Helena

Hi I was diagnosed in January this year privately - I then had to wait until May to see the Neurologist on the NHS - as there is no private medical insurance in the UK for MS. Having seen him he arranged for an MRI scan which was done in late June - results of this showed no new lesions and no"Activity" therefore although diagnosed as RRMS not entitled to Lemtrada as MS not showing as "Active" only offered the other frontline drugs. When I asked the Nerologist about Lemtrada he said he would not want me to put my body through it, as my MS is mild - I thought it would be my choice. So its obviously partly down to Money as always. Have decided to go for Plegridy - same as Avonex only injected every 2 weeks - have seen the MS nurse and now just waiting to start the DMD. So it seems we don't really have the choice until our MS gets worse even disabling before we can have Lemtrada. I live in the South of England - do the same rules apply in other areas of the Country do all Neurologists follow the NHS protocol? What concerns me is if I have to wait another 12 months for another routine scan, am having relapses but a new scan does not show "Active" this will mean I still can't have Lemtrada -madness! I still cant believe it will have taken 9-10 months before getting drugs - what do they define as getting drugs early as a time frame? So best wishes to everyone out there - just fight hard for want you want and scream the loudest.

Ahmed

@Ahmed

Keep fighting Helena, never give up what you want

Helena

@Helena

Many thanks Ahmed and best wishes to you.

lilbird

@lilbird

Hi all :) Thanks for all your input. @andywhittaker it sounds like you've had a really tough time. Everything you're saying makes sense to me. The damage has to be stopped & the sooner the better. I like the sprained ankle analogy, it really works. I hope you're feeling well, best of luck with your continuing post Lemtrada recovery :) I've been on the phone again this morning chasing up promised appointment letters! US-Emma I know Lemtrada seems to have worked miracles for you :D you're certainly not shy of a challenge! I can't imagine having to contemplate that extent of travel on top of the illness, disability & stress of treatment issues. You've really earned your miracle :) & it's great to hear how much enjoyment you're getting out of it! Hi @hollylb10 I really don't understand why you wouldn't qualify, sounds like you're keen to try & definitely sounds like you fall within the crazy criteria. Any chance you'd be able to get a second opinion or a better doctor. Fingers crossed for you- well if I could still do that :P @helena your story is a little different from mine. I managed to get to see a Neurologist fairly quickly (little over a month) as my GP was very concerned about my sudden onset & rapid deterioration. From there I was sent for an MRI (took around another month) & then nothing... I waited patiently, I had done my research & was pretty sure it would be a diagnosis of MS so at first the waiting was time to enjoy my blissful ignorance- I looked at it as until someone told me otherwise I was possibly fine & this would all just go away. Eventually I had to start chasing things up as I wasn't getting any info, long story short after endless fruitless calls, answerphone messages left, requests for alternative numbers I was woken by a call first thing in the morning & the news,that it was in fact undoubtedly MS was delivered to my semi awake self over the phone by a (very nice) doctor who I have never met. This was about two months ago & I still have no appointment. Given the apparently unquestionable clarity of my MRI & my ongoing symptoms I assume that my case is anything but mild & hopefully all this will make good ammunition in a case for Lemtrada. My concern is that I will have to fight hard for whatever I need- so much for avoiding stress! - sorry if that got a bit ranty! Anyway best of luck to you, whatever you decide to do next, do you have the option of seeing a different doctor? Worth a try if you can, if you haven't seen @US-Emma's story she tried a different continent! I realise that's not for everyone, not sure I could face up to that tall a challenge!

Ahmed

@Ahmed

@lilbird Lem is a very effective drug but I don't think it is enough in and of itself though. You also need a neuro-protective or a remyelinating agent on top of it, IMO. Which hopefully, will be out in our lifetime.

lilbird

@lilbird

Hi there @ahmed That's another thing for me to add to my list of stuff to read up on & research. Are you receiving treatment? There's so much to learn. :)

AndyWhittaker

@AndyWhittaker

@ahmed, I think @orlando27 has seen Lemtrada remyelinating alone. Andy

US-Emma

@US-Emma

The deal with remyelination post Lemtrada: Your body is doing the healing. Once you halt your own immune system's ability to attack the CNS, which happens after day 1 on Lem, the body's own repairative processes have a chance to get ahead of the ongoing (now halted) damage. Those processes were always there but where steam-rolled by the pace of the MS disease Damage. Make sense? Your ability to repair depends on what parts you have remaining to repair (cite the "your brain on drugs" campaign from the 1990s). The extent and location of severe damage you have accumulated will play a major role in how far you can recover. I have made a nearly COMPLETE recovery and just when I think there are no more improvements to make I seem to crest another hill of achievement. Just today I went grocery shopping, got labs, swept and mopped the entire house, made a Veggie Chowder, cleaned up, did laundry and emptied a 3 car garage (with my husbands help) bleached it, power washed it and reorganized it. We finally had to quit when it got dark. My ability and stamina seem endless.. Tomorrow we have a full day of travel, attending a festival, a family party and travel back home for a football party. I regularly plan and am able to do this many things in one day, and again the next day. Prior to Lem I was home bound, nearly bed bound and in constant pain. I could not do hardly any of my ADLs and even needd assistance blow drying my own hair and bathing. Quite the turn around in less than 18 months. Take this option if offered to you. Ask @Hannah015 about advocating within your community to get this medication on your health system at your local hospital- she had to work 18 months to get Lem but has just recently been treated. This medicine is a miracle and the only truly effective treatment available to us. Take care, Emma

lilbird

@lilbird

Thanks @orlando27 I hoped that as I'm very recently diagnosed that would work in my favour & improve my chances of recovery. I suppose there's no way to know how much recovery anyone can expect until they try it. @US-Emma I don't think I've ever had the kind of energy you seem to have now so I wouldn't expect to get that much from it! :D

AndyWhittaker

@AndyWhittaker

@lilbird when you have your Lemtrada infusion, the first 3 days are doubled-up with Methylprednisolone which is the anti-inflammatory steroid we sufferers are treated with to reduce the inflammation in our brains. It seems this is administered to reduce some of the infusion related side-effects of Lemtrada; remember MS is inflammation in our nervous system but unfortunately Lemtrada can cause system wide inflammation which can also cause odd relapses. Although it's early days for me, I have so much energy right now too! Andy

TracyD

@TracyD

@hollylb10 Your neurologist is wrong and needs to allow you the treatment or be replaced - Simples !!! With active relapsing you do qualify and some carful discussions about your lifestyle / work / existing medical conditions the use of others may well not be appropriate. I too scored 0 on the disability scale and will continue to do so thanks to the treatment, MS will take nothing more from me as a result!!!

lilbird

@lilbird

Hi @andywhittaker, I have had the 5 day course of Methylprednisolone a couple of months ago, just after I was diagnosed. So far I've not noticed any consistent improvement but some of my early symptoms that had spontaneously improved between GP referral & neuro (before steroids) are back- not sure what to make of that :( I understand that Lemtrada isn't a guaranteed miracle & most likely gets worse before it gets better but it really good to hear all the good outcomes people are having. I'm really glad to hear that you have loads of energy too maybe we could all end up like US-Emma :D

lilbird

@lilbird

Hi @sj-low You have sooo much to deal with. I have a close friend who is bipolar & I can't imagine having to stack that on top of MS :/ I'm not familiar with the problem steroids pose but it sounds like you're situation is even more complicated. I hope you have good support & a decent medical team to back you with whatever you decide. Keep fighting, keep smiling & keep your chin up! :D

lilbird

@lilbird

OK so I finally have date for neuro appointment next week so now this starts to get real & I have to actually do something. Think I'm having that exam moment where everything I've learned has evaporated from my head! Anyone got any notes I can borrow? :P

Stumbler

@Stumbler

@lilbird , time for a bit of revision. Start to make a short list of questions. Use the two headings:- 1. Where are we?; and 2. what do we do next? That should focus your thoughts... :wink:

lilbird

@lilbird

Thanks @Stumbler & I thought my revision days were behind me ;) Time for some deep breaths & lots more reading (or re-reading) & possibly some chocolate...? :D

lilbird

@lilbird

So summing up the original question... Some people want it but can't access it for either location or personal medical reasons. Other people don't want it because they don't feel they can risk the potential side effects, does that seem accurate??

lilbird

@lilbird

Shingles vaccination?

lilbird

@lilbird

@orlando27 thanks I'm trying to read all I can but between tiredness & foggy brain (& the sheer volume of info) I'm struggling to retain it. So now I'm trying to limit myself to the directly relevant & then move forward from there. To your knowledge is there anywhere you can look up Doctors or info on treatments avaliable in particular hospitals? I understand that Lemtrada Is the only treatment that offers the possibility of those results. That's what prompted me to pose this question here in the first place & there really doesn't seem to be any solid reason not to try it! Are there other necessary vaccinations or is it just shingles that lurks like that? I wish I'd met this doctor before so I had a better idea of the approach that would work best. Guess I'll have to work him out carefully but quickly as I go.

TracyD

@TracyD

@lilbird Drop me a PM if you want to talk and I will send you my contact details. Your location shows as London on the map but then almost everyone's does for me so that might be rubbish. Shingles is a virus that lives in you spinal fluid if you've had chicken pox. It can appear at any time immune system or not and its rather unpleasant. Let me know if you want a chat, there are places I can help you get information about Lemtrada friendly neurologists in your area xx

hollylb10

@hollylb10

I had a long chat with my nurse yesterday about Lemtrada, I then had a think about what my neuro said to me and I have decided I am not going to push for it yet but I am going to request another scan to see if there is new activity and active lesions. My neuro mentioned to me that I am a young (30 next month) mother and it is important to keep me well. He believes that Lemtrada is not suitable for me as I have got this far in my disease course (possibly a decade) and I have done extremely well. There is a chance that my MS may remain this way for the foreseeable future and taking a drug like lemtrada (which is not a cure for MS) may put me at more risk of other diseases and ill health and there is not enough info on patients 10, 15 and 20 years down the line. I have decided to trust this opinion from a specialist, but that does not mean I will rule out Lemtrada if things change for me. Just remember that everyone will have an opinion on what is best for you, but you should listen to the specialists, do your own research and make your own decision. There are people who are very pro Lemtrada and have had amazing experiences, which is great, but maybe they were experiencing a different disease course to you. There are people that are very against Lemtrada and other DMDs, and there are also people that manage their disease naturally and do very well. What I have come to realise is that if you ask a question on here or on any other MS forum you will have mixed views and opinions. Don't let that confuse you, you need to do your own research and speak to your own neuro. How do you imagine yourself 10 years down the line? How do you want to imagine yourself 10 years down the line? If you really want something and it is not being offered to you then fight for it. There is no cure for MS, the realisation of it sucks, but there are a variety of drugs out there that can help. And there looks to be some good ones in the pipeline for the next few years.