@AdeleCB

Last reply

AdeleCB

Pretesting for lemtrada

Hi all, Hope you are all ok this hot summer? I am awaiting for a date for lemtrada. Have already had s blood test and go back on the 19th of this month. Not sure what for. What does the prescreening/pretesting involve? I am with Addenbrookes. Thanks for all your support xxxx

JFP16

@JFP16

Hi, I had first Lemtrada treatment 7 days ago. The prescreening tests involved blood tests mostly and urine samples. I hospital urine test morning of each of the 5 days. I had a cannula in for all five days as it didn't fail. Now I have first appointment with MS nurse booked three weeks time for bloods and possibly urine sample. I'm taking two antibacterial tablets everyday for one month after Lemtrada. I hope this helps. For me mostly bloods. I'm at the National. All best J

TraceyP

@TraceyP

Hi @adelecb, how are you doing? I was only thinking this morning that I wondered if you'd heard yet about your date, guess that answers that!? hope they don't keep you waiting too much longer - can't believe mines starting a week tomorrow - getting really nervous now but am also really suffering with some more symptoms at the minute so in other ways I'm glad its soon to get on with it. Other than blood tests I haven't had any other tests so far - I did ask Mary the nurse if I'd be getting another MRI as I've had at least one possibly two relapses since my last one so thought relying on that wouldnt be very helpful as I'm sure there would be new lesions by bow but she said no, they don't rely too heavily on the MRIs for judging effectiveness. I've got an appointment this coming Friday so I guess they might do some more tests then but no idea what! Fingers crossed you hear soon (surely it can't be too much longer now!) and you're doing ok xx

Elsa75

@Elsa75

Hi, I'm sorry to hear you don't have a date yet. From what I remember, the pretesting is what you and the 2 responders have described and even on the morning of the 1st infusion, it cannot begin until results are back from the lab. Could your waiting rather be due to availability? I was told that at Addenbrookes, only 2 people can receive the infusion at a time because only 1 room is available for the Lemtrada infusions. Unfortunately the MS nurses need to fit in people receiving round 1 and round 2 so I guess the waiting list is only getting longer especially for round 1 as round 2 needs to happen approx. 1 year after round 1 so these probably take priority? If you have any questions about exactly what the hold up is, you could also phone or e-mail the MS Nurses. I know they are busy but they are very friendly and I'm sure they won't mind if it puts your mind at ease. Hang in there, hopefully it will happen soon! Best wishes xxx

Shevs

@Shevs

I go in tomorrow for my first round of Lemtrada! I am excited but also really nervous! Good luck to everyone and I will be putting on my daily updates to let you know how I get on!

Katy79

@Katy79

Hello! I'm booked in to start on 14 August at Kings. My pre- testing involved a number of blood tests (including HIV which required a specific consent, chicken pox to check I still had anti- bodies and about 8 other things (they took ten vials of blood I think - one for each test)). I also had to we into two pots, have an ECG to check my heart was ok, a chest x-Ray to rule out TB and swabs for MRSA. It was all done in one (looong) session by the lovely team at Kings about three weeks ago - and was all very easy and painless. @traceyp - not long now! I've just started my packing list (having spent the last two weeks in Spain topping up on Vit D and eating as much seafood and dirty cheese as I could!) Are you on the Facebook group? Xxx

TraceyP

@TraceyP

I'll be seeing Mary the MS nurse next Friday @adelecb - I'll chase her up for you if you still haven't heard?. Hi @katy79 - will you be staying as an inpatient at Kings? - Addenbrookes are sending me home each night so I haven't got a packing list as such, just a lost of all the charging cables I mustn't forget - laptop, phone, kindle, ipod!! All to preserve my sanity during the long day before they kick me out!! Hope all goes well for you. Which facebook group do you mean? - I've come across several for lemtrada so not sure which one is best!

AdeleCB

@AdeleCB

@jfp16 I hope you are doing well after your treatment xx @traceyp that would be great if you could chase them up but hopefully I should have heard from them by then and I'm in on the Friday anyway. How are you? Not long now and you'll have it all over with. You'll be fine so don't worry. I'll be in touch when I have a date and I'll see you the Friday Xxxx @elsa thank you xxx @shevs good luck. Are you at Addenbrookes? All the best xxx @katy79 maybe the 19tj is the pretesting stuff, not sure. They took three viles of blood when I was there a few weeks back. Good luck xxx

Katy79

@Katy79

@traceyp - yep - admitted for 5 nights. Just the Kings way. I'll be jealous of you getting home to your own bed each night (but at least I won't have to deal with my Pussycats' 3 am mice - Richard can do that!). Great if we could stay in contact as it would be great to hear how you are getting on to help pass the 5 days. Facebook group I'm on is https://www.facebook.com/groups/1537738223107805/ - have been finding it pretty useful. Xxx

Gazmaster3D

@Gazmaster3D

I had bloods and a LP pre treatment and bloods everyday during along with 1 baseline mri and ''water'' tests. I am 2 days post Lemtrada. The days in hospital were long but bearable with a tablet, phone and a few magazines. The hardest part for me was staying in overnight but I was able to go home from the Wednesday onwards and the steroids which kept me awake for 2 nights straight. The time does pass quickly enough and before you know it the weeks over. Good luck to everyone.

TraceyP

@TraceyP

Well I hope you hear from them before the end of next week @adelecb - somehow I doubt me telling them to hurry up would get you too far, but you never know!!? looking forward to seeing you on the Friday if you get chance to stop by - I'll let you know whereabouts they put me. Thanks for the facebook link @katy79 and we'll definitely stay in touch to compare stories, hope all goes well for you, in a lot of ways I'd rather stay in (being monitored through the night would make me less worried about side effects) but I know what you mean about my own bed, will be nice to get home to my daughters and husband each night too (after they've been covered in anti-bac gel of course!?) Good luck and take care xx

Hansonxx

@Hansonxx

Hey @adelecb I'm with Addenbrookes, my date for My first Lemtrada is the 5th December, they advised me the waiting list is super long going into the beginning of next year now ? Before they gave me the date which was a few weeks ago, I had a few blood tests etc. Hope this helps! X

AdeleCB

@AdeleCB

Hi @hansonxx thanks for getting in touch. I might be in the same time as you. Hope it's not too near xmas though lol. I saw the nurse about a month ago and she said they'd ring. Still waiting. But when I was there she said it could be up to three and a half months but they expect sooner. Seriously doubt it now. Lol. Back on the 19th. Please do chase up @traceyp if I haven't heard lol. Good luck everyone. Xxx

AdeleCB

@AdeleCB

Do you think I should chase up?? Do I contact Mary? Will need to find her number xxx

Hansonxx

@Hansonxx

I might see you there! Be nice to talk have someone to talk to! I know ? I was glad mine was at the start of December before Christmas! Yes I would chase her up, give her an email or call. They called me the day after I had my appointment to advise me they were putting me on Lemtrada and when. xx

AdeleCB

@AdeleCB

@hansonxx they called me a week after then said they would ring back with the date. I have sent Mary an email. Beginning of Dec would be good for me as I wouldn't be missing too much work as I work in a preschool and get a weeks holiday pay then. But I will go when they for me in of course. I don't want it late by xmas though lol xxx

Shevs

@Shevs

@adelecb I actually live in Newcastle so my treatment will be at th RVI xx

TracyD

@TracyD

Standard pre-treatment tests in the UK are as follows : •MRI - Head and Neck with Contrast •Smear (YUK - but only if you're female clearly) •Bloods - Lots of bottle changes, they do full blood count, thyroid, HIV test, and a myriad of other stuff •Chest X-Ray - Checking to see if you have TB If you spend a lot of time in the sun they may also ask you to see a dermatologist for a skin check xx

AdeleCB

@AdeleCB

I've got my appointment date through. 31 Oct ? @traceyp xx Did you have a chest X-ray ? Xx

Shevs

@Shevs

That is fab news @adelecb!! ????

TraceyP

@TraceyP

Yay @adelecb - I'm really pleased they've given you your date. It's a shame its still a way off but at least now you have it all booked the waiting to hear will stop - that part is stressful in itself! No I haven't had an x-ray so far but who knows what fun they've got in store for me at my appointment this Friday! I've only just had my routine smear test (yuk indeed!) within the last month anyway so fingers crossed they're leaving me alone where that's concerned. Also, Hi @tracyd! how are you doing? I was interested to read about the standard pre-tests in your post - when I asked about if there would be another MRI I was told there wouldn't be - as my last one was in April and I've had two relapses since then (the last of which I'm still in the middle of now) this seems weird to me (surely the relapses have likely done more damage that they now have no record of and any post-Lem MRI's that are done we're now not going to know if any new lesions are from before or after the treatment. As much as I don't enjoy them I kind of really want another one so I now there's a clear baseline to compare to. But it sounds like I'm not getting one. Also, in a blatant plea for sympathy - I've just seen the weather forecast for round here next week when I'm having my treatment - 28 to 30 degrees!!!! the heat really doesn't like me now and i'm pretty sure most of addenbrookes isn't air conditioned, this is going to suck!!! Hope everyone's doing ok anyway xx

AdeleCB

@AdeleCB

Thanks all. Let me know what they do/say at your appointment on Friday @traceyp xxx

TracyD

@TracyD

@traceyp I'm doing great thank you. Sorry to hear you're having a time of it, April does seem a little 'far away' if you have had new confirmed relapses and new symptoms. My 'baseline' was done on April 14th last year before my treatment which started on May 18th, so a little over a month (during which I definitely didn't relapse). I'd speak to my MS nurse and Neurologist and make a point of the relapses since the last MRI and remind them that they are not comparative as a baseline if you have lesions which have appeared since then which are currently un-mapped - it could make them think you've had activity post treatment that occurred pre-treatment without an up to date baseline MRI (with and without contrast)

TraceyP

@TraceyP

Hi @tracyd that's exactly what I'm thinking too - that its a bit silly knowing there's definitely been more 'activity' not to have an up to date one to use for future reference. I had what my MS nurse agreed sounded like a relapse back in May (new symptoms involving hyer-sensitive skin and pain in both hands and arms) although we only spoke on the phone so no exam of any kind. This time I'm not quite so sure it's actually a relapse but maybe just a flare up of old symptoms as i'm having tingling and numbness from the bra line down to my toes right down the front of me along with the delightful banding feeling across my upper stomach - all of which I have had before the only difference being my upper thighs and tops of my legs weren't involved before (my first episode of symptoms involved numbness which spread from my feet up to mid thigh and then later on into my stomach but seemed to miss out the middle bit if that makes sense). so more likely this time isn't actually a defined relapse (still pretty unpleasant though!!). I did meant to ask you as well actually - would you say when your immune system came back that it came back as good as before or not? The reason I as k is I currently have what I call a 'super-human' immune system and never pick up anything - literally nothing, I cannot remember the last cold/cough/illness of any kind that I had (I work with people who are frequently germy and blame it on having kids at school but I have two of those and still get away with nothing). To the point that i'm sure a sick person could lick my face and share my coffee cup and still not get me sick (never planning on testing this theory but you know what I mean! )- and I know its more than likely the over-activity of my immune system because of MS so i'm wondering if after Lemrada its likely to come back as effective or if i'm then going to be 'normal' and more susceptible (after the first bit when I know I will be of course!) forever? Just wondered what your experience was. @adelecb - sorry for hijacking your thread there!! I will of course let you know how Friday goes - see you soon xx

AdeleCB

@AdeleCB

That is ok @traceyp lol . Don't worry! How much time did you have off after treatment, or are taking off. I don't know whether to do two weeks. I know most go back after a week but I work in a preschool with all the germs lol. I don't get paid but I'd rather be poor than ill lol. Xx

AdeleCB

@AdeleCB

My last scan was March time. But the neurologist thinks I'm having another relapse. No mention of an MRI xx

AdeleCB

@AdeleCB

I'm back on the 19th for a consenting appointment. What happens at that????

TraceyP

@TraceyP

Oh no @adelecb - sorry to hear you are having another relapse too. I'm taking the week after treatment (that's what Mary told me to do) then I'm meant to be back at work for a four day week (after August bank holiday) then I've got the week after that booked as holiday as that's the week my youngest starts school and she'll only be doing half days so I need to drop her off and pick her up. So I've only got to do four days out of four weeks just the way its worked out but should help me break into going back more slowly. Xx

AdeleCB

@AdeleCB

Yeh Mary said most people start to go back after the first week. I really don't know what to do whether to just do the week or have two. Xx

TracyD

@TracyD

@traceyp I had the 'superhuman' immune system too, the last thing I 'caught' was chicken pox in 2003 - since then I'd had nothing but a few bouts of self induced 'body has given up' kind of things - usually over say an implementation weekend when I'd had 3-4 days of 2-3 hours sleep back to back - my glands would come up and my sinus's shut down - kind of like my body going 'if you won't slow down I'll make you' - I would pre-plan it with work, they knew I'd literally crash afterwards I always did :-) Since Lem I've picked up 2 colds - both from my husband - one before Christmas last year and one in February. Both took a little shifting, but I was sick less time than he was - so my immune system even only 1/3rd functional seems to still be a 'demi-god' even if it's not fully 'god like'. I do have a quite pronounced OCD now about germy people and things (it's getting better though) I've used gallons of anti-bac and washed in some strange places - I have 2 germy 'parents' at work who sit near me who know far better than to sit within 20ft of me if they even suspect they might be contaminated :-) @adelecb I went back to work on the Monday both times, but I also worked from hospital during the treatment - the doctors approved and told me that it was better to keep busy while I was there. Just go back at your own pace, if you feel fine, do it, but don't over do it, if you don't take some time to rest up. Most of all don't feel like you 'have to be sick / tired / low' because you hear other people are - funnily enough far less people shout from the rooftops when it's all fine than do when it's not xxx

TraceyP

@TraceyP

Thanks again @tracys that's good to know that it might come back to this level at some point then - there are very few upsides to all this but the superhuman immune system is at least one good thing!! Xx

TracyD

@TracyD

@traceyp LOL ..... MS seems weird, some people pick up everything going and others don't ..... perhaps I need to give my superhuman immune system a superhero name .....

TraceyP

@TraceyP

@tracyd - I really like your idea of naming our immune systems, lol! I just know I'm really going to miss the little fella (whatever he or she is called!?) once it gets blown up next week!! Right now I'm being squeezed so hard by the damn MS hug (and what genius came up with that name anyway?!! Hugs are nice things - this is far from nice) maybe its trying to comfort me in advance for the loss of my immune system?? Or maybe its just squeezing all of the sense out of me!! (far more likely!) anyway, enjoy the rest of your day xx

TraceyP

@TraceyP

@adelecb - the consenting appointment is the one I'm having this Friday - all will be revealed Friday night!! (in other words, I have no idea what they're going to do to me yet!!)? will keep you updated though xx

TraceyP

@TraceyP

Have jus done a quick search @adelecb and i'm not sure if it is the place Mary was referring to but Pemberton house is one of the visitor accommodation places on the addenbrookes site and their prices are on here http://www.pembertonhouse.co.uk/room_facilities.php I found that link on the addenbrookes site here http://www.cuh.org.uk/services/non-clinical-services/accommodation/visitor-accommodation Not sure if that helps (or if the links will work but worth a go!! If not, I wouldimagine the Addenbrookes patient liaison service should be able to help. xx

AdeleCB

@AdeleCB

@traceyp I'm not sure if it is the hostel. Saw it too lol. Mary isn't show of the price but will find out this week. I hope it isn't £55 lol. Quite a lot for a hostel . Look forward to hearing from you Friday night and good luck xxx

TraceyP

@TraceyP

@adelecb - I thought it was a lot too, we stayed in a very nice holiday inn in Warwick Friday night in a family room with two double beds and breakfast for four people included for £72 which seems a much better deal!!! Lets hope that's not the one then!! ?