I’ve just had my blood test results and have come off Tecfidera as a result of low lymphocytes.
I started out with lymphocytes at 1.4 in February and started Tecfidera in March the count went down to 1 at my 3 month blood test in June and down again to 0.4 at 6 months in September. I had a test in October which was again 0.4 and last week of once again 0.4. The specialist nurse said when someone has been at 0.7 for 6 months they have to stop. Also that when the lymphocyte count goes down to 0.4 and stays there for 3 months it is unlikely to go up again whilst on the drug. So she agreed that the right thing to do is to stop.
They should recover within a couple of months. I’ll have a blood test in January and see the neurologist then too. Meanwhile I just have to do my damndest to avoid infections and viruses! And since I couldn’t have the flu jab (due to low lymphocytes!) I have to hope I don’t get flu!
So this was my fourth DMD: Avonex gave me cognitive problems, Copaxone stopped working after about 5 years, Tysabri gave me hepatitis and now Tecfidera is out. So that’s it for me. No DMD. Unless I have a clear cut relapse with at least some remission, I’m calling it quits. I’m on the edge of SP anyway (essentially RR but lots of progression and not much in the way of relapses with any remission for nearly 4 years).
For those of you on Tecfidera, don’t worry, so long as you have your blood tests and stay above 0.7/8 you will be fine. I still believe it’s an excellent drug. You may be interested in reading Prof Giovannonis blog about Tecfidera and lymphopenia from Monday: Multiple Sclerosis Research: ClinicSpeak: more on PML and lymphopaenia
I always liked the idea of Campath, but think its out because I’ve had auto immune thyroid disease in the past. Plus, because I’ve had pretty dodgy side effects (particularly drug induced hepatitis) they’d not be too keen. When I saw my neurologist about a year ago he scrawled a list of DMDs and drew lines in everything that wouldn’t be suitable. A line pretty firmly went through Campath, mostly I think because it takes such a long time to get out of your system if you have side effects. And although I think they’d find it interesting to see what it does to a person who’s already had thyroid disease, it’s not really a viable option! A line went through everything that is metabolised by the liver as well as a few of the others.
I feel like I want a bit of time without nasty side effects before I even consider anything else. If I ever do. And of course at the present time everything’s out because I’ve got such low lymphocytes!!
Think I’ll stick to dosing myself up with chocolate. And if it has to be dark chocolate, that’s OK too. Lindt do quite a nice one with salted caramel!
I wouldn’t want to volunteer as guinea pig for that one either, Sue. I am sorry that you seem to have worked your way through all available delicious choices on the DMD cocktail menu.
Fingers crossed that your immune system is soon back in fighting trim and that you avoid the bugs in the meantime.
Thanks for the good wishes. I’ve now got an appointment with my neurologist on Friday morning. To be honest, I can’t fault the MS therapy service. I’ve had texts from my MS nurse as well as the phone call at 6pm from a therapy nurse offering me the neuro appointment.
I really can’t see another DMD being offered to me even when the lymphocytes get back to normal. (Not even Campath Alison!)
I’m sorry to hear you’ve almost certainly come to the end of the line with DMDs.
If it may be of any comfort, I’ve never been on them (my choice, but with the complete support of my neuro).
I’m sort of where you are (albeit without treatment) - i.e. not much in the way of relapses for years anyway.
I think the last definite one I had was the one that led to my diagnosis. Since then, I’ve had a couple of things that were a bit something-and-nothing, but nothing I could say with absolute certainty was a proper relapse.
There is a possibility - indeed, my neuro and I now both think a likelihood - I had MS for many years before being diagnosed.
I’m still officially RRMS, but there’s a chance I’d already done most of my relapsing before I was diagnosed - often not even going to the doctor about it, but dismissing them as viruses, muscle strains, or whatever.
Anyway, whilst I won’t say everything’s “fine”, as I’m not left in any doubt I’m ill, not being on DMDs doesn’t inevitably mean relapsing all over the place - it hasn’t for me. So with a bit of luck, you may discover you’re no longer all that prone to them anyway.
I’ve never really thought about it to be honest. Some of the early days stem cell treatment seemed to be more wishful (expensive) thinking/treatment, and after I read Stella Thorleys blog about her HSCT stem cell treatment, it scared the living day lights out of me.
I think ultimately it’s the long term goal for people with MS to be treated (or even cured) with stem cells, but I doubt I’d be a candidate at the present time.
About 4 years ago, I thought I wasn’t having proper relapses any more and wasn’t on a DMD. I was slowly becoming more disabled, went from occasionally using a stick, to first one crutch, then more often two. I thought I was SP. Then I had a total humdinger of a relapse. My legs, in fact every thing below the waist, went completely numb and totally unusable. It took about 3 days to go from using a crutch around the house to being totally unable to move either leg. I ended up in hospital for 2 weeks, then a neurological rehab centre for a couple of months. After IV steroids, and a lot of physio (and a rather expensive refit of the bathroom and certain other bits of the house, including a ramp and moving some doorways etc), I eventually came home. I was using a wheelchair pretty much full time and only doing a tiny bit of walking with a walker. It took months of trying to get help with foot drop that eventually became over 2 years before I self funded FES. I can still only walk a little bit in the house with FES and a walker and that’s for nothing functional as I have no balance, no core muscles to speak of and not much strength.
Because of this relapse that had some remission (actually quite a lot, it’s only when I think back to how pleased I was to be able to wiggle one big toe that I realise just how much) that made me go back onto DMDs. I was really disappointed by my liver letting me down over Tysabri (which took about 18 months to get) and it then took another year to start Tecfidera.
I’ve not had another proper relapse since the big one. So I suspect (again) that I’m not really RR any more. But then I thought that 4 years ago. I can’t say that in the intervening time, being on (and off and on again) a DMD has helped at all. In fact, given the hepatitis and the lymphopenia, they’ve done the reverse.
Which is why I’m sticking with your gang now Tina. No DMDs for me, unless I have another clearly defined relapse with some definite remission, in which case I might see if there’s one I haven’t already tried and/or had it ruled out for me because of previous auto-immune reactions or diseases!!!
I’ve just seen my neurologist. He agrees with me that once my lymphocytes recover, to leave DMDs alone until/unless I have another clear relapse. He actually said if that happens, he’d even consider putting me on Lemtrada after taking some advice re my previous auto-immune thyroid disease. So I could end up being that Guinea pig after all. (I didn’t like to tell him that I’d rather throw myself off a cliff than take Lemtrada, unless I was already so disabled by a relapse that there would be no downside!)
Apparently my lymphocytes should recover within a few months. So that’s a positive note for anyone who’s just starting Tecfidera - if you’re unlucky enough to have a low lymphocyte reaction, it won’t take long to recover.
In your position, declining Lemtrada would be every bit as reasonable as accepting it, so I can’t see him having a huge issue if you said no. I was going to say it’s nice he would not categorically rule it out, but I’m not sure it is, really. Sometimes I think it’s easier if something is definitely OFF the table, so there’s no difficult decision to make.
A friend of mine once said (not in relation to illness) that you can never have too many choices. But I’m not entirely sure that’s true, especially when each comes with a possible downside.
Years ago, my father was falsely told he was eligible for a trial of a cancer drug, and to go away and think about it… He was terminally ill anyway, so you might think it would have been a no-brainer, but it wasn’t a very nice drug, and didn’t hold the prospect of a cure - they just wanted to see if it had the potential to prolong life.
So really, the issue was quality versus quantity - did he want to try for an extra few weeks, but at the cost of some pretty horrendous side effects?
We went on holiday, and I know the decision preyed on his mind a lot. When we got back, it turned out it had all been a mistake, and the trial had never been open to people with his particular (rare) form of cancer! I was angry that they’d put that tough decision in front of someone who had only months to live, without double-checking he was even eligible. But I think we all felt relief that he didn’t, in fact, have to make such an impossible choice - the treatment wasn’t aimed at patients like him.
Anyway, sorry for the long digression. I just sometimes think the Medical Profession has become obsessed with more options always being good. But when they’re all pretty unpalatable, I’m not sure it helps. It just causes stress and anxiety about which would be “least bad”.
Its not unknown for people to have Lemtrada with existing thyroid issues so rest assured you wont be a guinea pig! I can understand your reluctance though given the hard time you’ve had with DMT’s to date.
When I discussed it with the clinic nurse, she told me if the lymphocytes stay at 0.7 or below for 6 months they would stop the drug. Various doctors set different limits. Dr Giovannoni from St Barts takes people off Tec if they’ve been on 0.8 or less for 6 months.
The nurse also told me that if it goes down to 0.4 it will not recover whilst on the drug. I don’t know whether the implication was that when it goes down it stays down.
Are they testing your blood more frequently than 3 monthly now? When mine was at 0.4 on the 6 month test, they retested after one month. (And again after another month.) It’s a worrying time, so it’s better to have a test sooner than later.
Don’t be worried by my experience. My blood was at 0.4 at 6 months and they were OK leaving me on the 'Tec for another 2 months while they tested the blood every month. They would have left it another month or two but I decided to stop now. It was only then that the clinic nurse said she didn’t think it would rise from 0.4.
Just make sure in 3 months time that you get the results and if it remains at 0.7 that your neurologist has looked at the results and considers the risk worth taking. It might be worth asking for the JCV antibody test at that point (because the risk of having very low lymphocytes and staying on Tecfidera is PML, which you can’t get unless you test positive).
I came off not due to the PML risk (last time I was checked I was JCV negative) but because at 0.4 there was a risk of making any other infection worse.
I will be getting blood tests in 3months (Jan) - Is the JCV test a blood test that can be performed by MS nurse at the same time as my other blood tests?
I am a bit confused as I read going on Tec doesnt make your immune system worse? I know lowered lymphocites is a normal thing with Tec, but not sure if that the lower lymphocites is what helps the MS? What is the normal lyphocite count with people on Tec?
Most importantly is there anything I can do to increase my lymphocites for my next blood tests?
Hmmmm lots of questions most of which I don’t know the answers to!! But I will have a stab at some of them!!
The JCV antibody test should be possible to be done by the clinic nurse who does the other bloods for your three month check up. Generally they do the test for people on Tysabri but I can’t see any reason why they shouldn’t do it for Tecfidera.
I think (this is not something I’ve been told, I’m just guessing really) that the reason Tecfidera works is that it does lower your lymphocytes. This is why everyone’s go down by about 25%. And they (as far as I know) go down lower than this initially but then recover to about 75% of baseline. And this would be the reason for the baseline test initially. I think maybe the problem comes when your lymphocytes don’t know when to stop decreasing. So my lymphocytes were quite low initially at 1.4 therefore when they went down to 0.9 at 3 months that wasn’t much more than expected. It was only when they dropped to 0.4 and then didn’t recover that there was deemed to be a problem.
So if yours started at 1.6, dropped to 0.9 then 0.7, so long as they increase to more than 0.7 at your next blood test then they’ll be on the way back up. Eventually I guess they’d recover to about 75% of your baseline.
The problem comes if they stay at 0.7 or drop any lower. If they drop lower than 0.7, don’t let them make you wait 3 months for a further blood test. In fact, if they don’t go above 0.7 you should get the neurologist to help you make a decision about staying on the drug.
Another guess is that there is nothing you can do to help the lymphocytes recover.
Obviously, I am a total ignoramus about the science involved in this. I’m quite happy to be corrected about any (or all) of my conjectures, conclusions and downright guesses.
