@Macattroll2

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Macattroll2

Lemtrada treatment???? Anyone tryed it

Hi there I'm just about to make the biggest descissions in my life about medicating my ms and felt scared by what to choose I have 4 options 2x tablet form 2x iv form one being lemtrada that I'm swaying towards and wondered if anyone has been on it yet if so could you share your experience with me xx thanks

Stumbler

@Stumbler

Lemtrada is a bit of the "new kid on the bock" in the UK, as far as treatments are concerned. You've probably read this, http://www.mstrust.org.uk/atoz/alemtuzumab-lemtrada.jsp . And there may be something here :- http://www.ms-uk.org/lemtradaarchive . Lemtrada, or Campath as it was called then, was trialled in Cambridge. As far as I know, the treatment consists of two annual infusions, which basically destroy your auto-immune system, allowing it to rebuild without the myelin-damaging charateristics. I hope this helps.

Crackers

@Crackers

Hi, I had it in 2009 and 2010. I haven't had a relapse since taking it, just a few minor problems brought on by other health issues. My symptoms have vastly improved but not gone away completely. My main problems were walking, balance, brain fog and bladder issues. My walking has improved, walking longer distances now and not so robotic now. My balance only gets wobbly if I've been over doing things and the brain fog has gone completely.i still have bladder issues but they are manageable and have stopped taking Detrusitol. It wasn't a walk in the park. The first time I had the infusions I felt dreadful and was off work for 4 weeks. I felt so tired and generally yuk I wondered if I had made the right decision. But after about a month I felt so much better. The only thing is I now have an over active thyroid. If you choose to have Lemtrada you may not feel as I did at first so don't let that put you off. The improvement I've seen has more than made up for it.

Cazzzzzy

@Cazzzzzy

Good luck with what you decide @Macatroll2 ! ... Keep us posted :) xxx

Macattroll2

@Macattroll2

Thank you guys for your interesting feedback xx It's great to hear from someone who has actually had the treatment and sounds like the choice to make to improve things in my life for a very long time and I will certainly keep you all up to date when I get started on it I'm just waiting on MRI scan then once results are in then the medication will start at earliest possible date xx I did hear that it caused thyroid problems but I'm boarder line under active at moment so I wonder what it will do. Just have to watch this space xx

meg

@meg

Having had a couple of episodes in quick succession, it is accepted that the Betaferon is not working for me any more. The consultant has agreed that I can go onto the next level on of DMDs so now we're trying to decide which. The blood test came back very positive so Tysabri is more or less ruled out. I'm due an eye test next month to check the risk of macular oedema which as a diabetic I am more prone to. If that rules out Gilenya then I'll have to look at Lemtrada. Unfortunately, there's a family history history of thyroid trouble (brother, sister and aunt) so there are potential problems with that too. In the meantime, I'm trying to cute my MS with diet the Australian way, subject to the necessity to balance insulin and food intake. Sorry to go on a bit -it's all getting a bit much

DarrenL

@DarrenL

Hi Macatroll2, I just replied to Judy-Gy about Tecfidera and I'm writing almost the same thing to you. Please do keep us updated on your decision and progress, as it's helps us with the decision making process. @Meg: Wow, another Diabetic MS sufferer, I didn't think there were many of us out then! Daz

Macattroll2

@Macattroll2

Oh don't worry you carry on it's always good to get it off your chest and seek advice which is why this site is good xx hopefully you can settle your ms down a bit with duet and keep your diabetes under some control then you can channel your ideas on ms treatment xx looks like if test results are ok I can try the lemrada xx We're here to off load xx Michelle Chat soon xx

Macattroll2

@Macattroll2

@darrenl Certainly will keep you all posted about my choices and test results to hope that the next step is the lemrada Iv treatment It's looks like it's going to be a tough ride for 5days in hospital. 1st week then have to incubate myself for 6-8 weeks away from people and germs as I'm going to have a compromised immune system resetting itself and getting back to normality then after 12 months I have another 3 days of Iv to then finish treatment but kept monitored for next 4 years closely to them hopefully see no relapses xx fingers crossed xx But I shall blog it so others can read and make decisions for their own great mention

US-Emma

@US-Emma

Yes! I live in the US and it is not approved here but in April 2014 I traveled to Germany to receive Lemtrada. Several of us who have gone abroad for treatment are sharing our experience at Lemtrada.blogspot.com We have tried to capture our experiences as they happen to help others who might go down this path. We have all had the same experience with the post-infusion fatigue (originally I thought I was sick) beginning about week 2 or 3 and lasting through week 12 or longer. The fatigue is different from "MS fatigue" and does get better during that time (overwhelming, all day at first, as the weeks move along it abates a little day by day) During this period your body is ramping up cell production to replace what Lemtrada destroyed. So plan to be in bed resting. For some this period is longer & harder than for others but if you know to expect it and plan for it I think it is easier to manage. This is also the time you are most susceptible to catch infections so sequestering yourself is a good idea- both to rest and avoid germs, infections, etc. I too have seen a Reversal of many MS problems- lots more in specific on the blog. I don't want to take up space here. This improvement continues to amaze me! Best Wishes and if I can answer any of your questions personally I am happy to do so. Be Well, Emma PS e-mail address removed to protect privacy. Any questions can be by personal message, after a confirmed friend request. E-mail addresses can be exchanged privately then. - Stumbler, Admin

vasy

@vasy

Hi @Macattroll2 I'm on Lemtrada since the beginning of this year. Could not say much about it as it's only 6 months (although I have some minor improvements). Know a guy from a clinical study who failed rebif and got campath(old name for lemptprada) in 2011 (or 2010?), and remain relapse free and stable since then. Hope this helps.

vasy

@vasy

Also Cambridge university published a paper earlier this year, in which they show that most of their patients treated with lemtrada in the beginning of the 2000s are stable or improved by now and only 4 are progressed to SPMS (as opposed to 40-50 as predicted given the time since their disease onset). Here is Prof G. of Barts post on this topic: http://multiple-sclerosis-research.blogspot.ru/2014/05/alemtuzumab-long-term-follow-up-for-up.html

US-Emma

@US-Emma

Vasy, What were your MS symptoms prior to Lem, if you don't mind me asking. I am 40 and had significant pain, fatigue & cognitive issues prior to Lem. I also had a fair amount of spasticity. I had stopped driving due to fatigue & eye problems (eyes would not constrict, so all light even headlights hurt also a weird phenomena where my brain would create images in low light that were not there, it has a fancy name). I was no longer shopping for even groceries, cooking or cleaning due to fatigue. I am now doing all these things & my eyes are much improved. I even went through a period where my feet hurt because they weren't used to being used! But I now have the stamina to be on my feet much more. I am much better at 20 weeks but a friend who was treated about 6 weeks after me has little improvement. She is 60. I don't know if this is our ages or accumulated disability or just time since infusion that makes the difference in our response. My response to Lem has shocked me but I wonder what makes the response rates different for different people. I only know a limited # of people who have taken Lem, and all are online friends. The medical journals don't seem to get into who responds & why. Thought you might have some insight. Thanks, Emma

vasy

@vasy

Hi @US-Emma, Glad to hear that you have improvements! Prior to the treatment I had balance and bladder problems that are almost completely subsided by now (touching wood three times) in the way that allows me to do things like wheelie/manual on my mountain bike again, which requires a strong sense of balance. I still got some sensivity issues in my upper body and limbs, they are still there but are significantly improved. Also I had eye issues like visual snow (or static) and trails after moving objects (not improved) and decline in contrast vision and altered vision fields (improved significantly). The appearance of the first two (snow and trails) coincided with my first MS attack, but decline in contrast vision and fields distortions seems to progress over many years (as the bladder problems are) before I even knew of the existence of such thing as MS. I'm not sure about visual snow and trails though. Although their appearance coincided with my first MS attack, as I see those symptoms are not typical fom MS and every MS specialist I have talked to agrees with this. Possible this is from my previous hallucinogen/psychedelic drug usage and in fact is a variant of mild http://en.wikipedia.org/wiki/Hallucinogen_persisting_perception_disorder . Or maybe usage of those drugs caused some minor damage to my brain which was later amplificated by the damage caused by MS to become apparent, who knows. Or simply this is very very rare MS symptom. As for improvements... I don't know. The general rule AFAIK is the younger you are and the less disability you have — the better chances for the good response. Although in the paper mentioned above, Cambridge doctors observed improvement as big as minus 4.5 EDSS points in one of every 5 patients, if I got them right. Regards, Vasiliy.

US-Emma

@US-Emma

@vasy, Thanks for your open-ness. One of my eye things sounds similar to yours- in low light I see things scurrying in my lower peripheral visual field. At first this was surprising and unique but if it happens while driving at night I think something is running in front of the car & have slammed on the breaks for no reason. I also had some hallucinations post Lem that lead to an early MRI about week 14. I don't have a history with psychedelics but did have hallucinations previously when taking Cymbalta (in the Prozac family). My doc was always wanting me to try drugs in this class as an adjunct for pain but I always had bad reactions & this side effect was the last straw. So like psychedelics, this drug class use may be a predisposing factor. Thanks for the link, I love that blog. Have you thought about a third course? I am not at the 6 month mark on my first round & I'm already thinking of how I can finagle 3 doses. I read a US blog of someone who had 5 rounds of Campath when it was still available here. I am kinda fanatic about aggressive therapy & I always lobby to push the envelope. I rarely have a numbness issue anymore & NO jumping muscles- that has been a true blessing. I hated when those started & lasted hours. Do you still take any muscle relaxers? I am for to 8mg of tizanidine (Zanaflex) at bedtime and 5mg Clonaezepam in the AM. I was taking 2 others and higher doses of these two prior to Lem but I can't seem to get to zero without spasms. No pills was my goal and I will keep trying to reduce every month until at least the 6 month mark- 7 October 2014, all doc told me not to 'take stock' until at least 6 months but that's hard to do when you seem improvement- I guess it's selfish to want it all back- after all I'm 11 years older... Maybe I'm being too optimistic about possible results... Emma

vasy

@vasy

Hi @US-Emma, As of visual and perception disturbances.. The Cymbalta is a serotonin and noradrenaline reuptake inhibitor (SNRI), and acts by increasing serotonin and adrenaline levels in the specific regions of the brain which is stimulating serotonin and adrenaline receptors. Most "classic" psychedelics like LSD and magic mushrooms works through a stimulation of a specific serotonin receptor 5-HT2a in the brain, which is believed to take a key part in their hallucinogenic properties. So there is some common in the way how those drugs (SSRIs, SNRIs and psychedelics) work. The HPPD disorder mentioned above is thought to be caused by downregulation of the 5-ht2a serotonin receptors after excess stimulation either by endogenous serotonin (it is known that chronic administration of SSRI causes down regulation of wide range of the serotonin receptors as result of flooding them with excess serotonin, though I'm not sure whether 5-HT2a is affected or not) or by acute stimulation with a drug. There is a community of HPPD suffers http://hppdonline.com , may be you will find something useful there. As for me, after searching pubmed and resource mentioned above, I asked my neuro for the prescription of pregabalin for this and it made some positive changes. I want to ask him to change this to Lamotridgine on the next appointment, maybe this would work better (also it could be beneficial for my MS, as lamotrigine is thought to posses neuroprotective properties). I think it’s too early to decide on the third course as I don’t know how I’m respond to the first two. And also, my neuro is personally pretty sceptical even on the need of the second course for everyone. They think that one course could be enough for the majority, although they are following common guidelines and give 2 as baseline. Sorry, could not say anything on relaxers.. And as for muscle twitching I had only short period of this, during the period of recovery from my first attack (pretty strange, though). Maybe just wait a bit, most improvements peaks between 3 and 12 months, I heard this many times from my neuro and read this in research papers.. Emma, so you got your Lemtrada in Germany and returned back to the US? But how with the monthly blood monitoring and management of possible side effects? (hope this would not be your case though!) BR, Vasiliy.

Caterpillar

@Caterpillar

@US-Emma Lemtrada ( or Campath, as it was then called) was first tried on progressive MSers at Cambridge and was a miserable failure. It seems to work early in the disease when there is still inflammation Lemtrada can stop. Later on, when there is more degeneration and less inflammation Lemtrada does not seem to work. The studies done at Cambridge enrolled people early in the disease ( 2 studies I think were up to 3 years disease duration, 1 allowed up to 10 years disease duration- but the mean disease duration of the patients enrolled in that study was still 3,8 years). I am reading the Lemtrada papers now :-), but it's probably too late for me...

vasy

@vasy

Hi @Caterpillar, There is an opinion that progression in those treated patients is much slower, but due to a lack of the control group they were unable to see this in those particular trial.

US-Emma

@US-Emma

Sorry for my absence over the weekend- a short visit turned into a longer party and left me dead when everyone left :) We don't have kids so when kids come over I 'play' and this weekend I was in the pool with them for 4 hours. Its fun to be a kid again but man the water can wipe you out! I even got a sunburn- at 40 I should know better than that! @vasy Vasiliy- I went to Germany just for the week and I can order my labs back here at home but my neurologist monitors them also. (I was a Nurse Practitioner, now retired, but this license allows me to order medical tests). I just updated my week 20 labs and something weird happened this time- you can see them here: http://lemtrada.blogspot.com/2014/08/partial-labs-week-20.html I need to consult with my neuro about them but I thought I would see what you thought. You seem very knowledgeable. The trend of the CBC and T&B cells are shown and have made an abrupt change in a strange manner from just 4 weeks ago. I think there was a lab processing error because these make no sense. Just thought I would see what you thought. As far as SE management- most of those are during the week of infusion- except for the thyroid, ITP and Good Pastures- which I guess are more 'complications' than SE. Those all peak at or around the 24th month so I'm still pretty far from that. Did you see the recent data released out of the NE US showing one patient had a kidney transplant? For that reason I check my urine for glucose and protein every 3 days at home. That is a very rare side effect but the most serious in my opinion. Thanks for your input! Ps- good friend in grad school here was a Muscovite- we had a lot of fun exploring the differences in our two cultures :) I didn't realize you were Russian until I sent the friend request- Privet! I took one semester of Russian in undergraduate studies, it sufficiently kicked my **** but I love the culture :) Emma

Macattroll2

@Macattroll2

Thanks guys for your comments and advice I have read all your comments and it's good to see that you are having a successful time on the new drug and I just want to get on now and kick butt out of this ms. I have lost sensation or use of arms, hands, legs, the ms banding (hug) pins and needles, eyes (double vision,blurring) all at different times but that's the endless list I could add but I've forgotten or just chose to block out hahaha I am feeling hopeful towards my future now I know that this is what been offered to me and the results that you guys have shared that this the treatment I have chosen out of the 4 that was given by my neurologist to research. I hope your all doing well and having a great day Keep improving or fighting xx

vasy

@vasy

Privet @US-Emma :) I was on a short vacation, so no Internet access for the whole week. The abrupt change in lymphocyte counts seems strange. I got no such thing, although my counts are still pretty low — 0.52 after ~6 months (but this is in normal range, median is 0.6 after 6 mon). Yes, Emma, I thought about performing tests at home as I read that Goodpasture can kill kidneys just in 3 days and conventional monitoring seems not to be enough. What test kit do you use? I have read about that patient. There are 4 known cases in total linked to Lemtrada as far as I know. Regards.

US-Emma

@US-Emma

FYI, I started a new post on this topic as we were getting off the main question here. Emma

sinead

@sinead

Hi there, I was wondering if anyone knew which hospitals in the UK (ideally London) are currently treating people with Lemtrada? I have my second appointment with my neuro in October, it's been a long time coming as I feel that I have been steadily getting worse on Copaxone, my first line treatment which I have been using since April. Having done endless research into alternative options, I have my heart set on Lemtrada. I have read that since NICE have given the go ahead with the drug, local hospitals now have a legal obligation to provide the treatment to patients deemed eligible, and unlike most treatments newly approved for NHS use, we don’t have to try other drugs first. This all gives me hope that I should be able to discuss my case for aggressive treatment with the neurologist, however the nurses have already told me it is not available at the NHNN, which is a real shame for such a brilliant high class hospital. I may be able to get referred to somewhere that does offer this, but I don't have the first idea where in England this may be! Any help will be greatly appreciated, and hope everyone is keeping well x

US-Emma

@US-Emma

I know of a US patient who was treated in May by Dr. Ben Turner at Bart's & The London hospital. She wrote a review (all positive) of her experience on our blog- Lemtrada.blogspot.com Her name is Beth on there. If you can't find it let me know & I will repost the info here. I don't know how your system works exactly but I hope you can use that facility. She had a great experience. Blessings, Emma

judy-gy

@judy-gy

It's a dance right? (It's ok, I am standing in the corner already, it's holding me up, but I am here) Jx