My lymphocytes are low again. I started Tec in November and had my bloods checked after a month and my levels were 0.59. 3 months later dipped a bit to 0.56. My Gp has been asked to monitor my blood results and again they were 0.56 so now I’mm having them checked in a months time - at least they are being pro active but nobody has mentioned how long it’s acceptable for low readings from my docs or neuro dept 
My husband at 52 had a heart attack. Fortunately just a minor one 4 weeks ago and has joined the pill popping sessions with me now. On top of this I’m having a rough trot of things with a possible stomach ulcer (was in a&e Tues night & was given morphine for the pain) so left hospital with some medication and the following day had my 1st injection in my hip to ease my hip pain as I have degenerative cysts - hip replacement in the future to look forward to! It’s been a tough month/week
Theres someone called SSue on here, who may be able to help as she has low lymphoctes or summat. Im sure she`ll be along soon.
pollx
Yes Poll, here I am.
It sounds to me like ultimately you’ll have to stop the Tecfidera. Once your lymphocytes have been at 0.5 - 0.6 for a few months, they generally accept that they’re just not going to recover. And they take you off the 'Tec. To be honest, I’m a bit surprised you’re still taking the drug after 6 months of low lymphocytes.
The expectation is that when you start Tecfidera your lymphocytes will drop a bit, but they should recover within a short while, ie within a couple of months. I started it in March when my pre-'Tec count was 1.3, by September my lymphocytes were 0.4, where they stayed until November when I stopped taking it. The nurses said that I could stay on it and have them checked again a month later, but that once it’s got that low, it doesn’t often come back (they said).
Lymphocytes are part of your white blood cells, so they help to fight off infection. If they’re too low for too long, then you might be more prone to infections (I think, although a GP did once tell me that lymphocytes aren’t as important as neutrophils in fighting off infection). In actual fact my lymphocytes are still only at 0.5 now, so still nowhere near normal which is between 1 and 3 (on a scale that makes very little sense to me so I’m not repeating it), but I’ve not had any infections through the winter apart from one UTI. I couldn’t have the flu jab but I’ve not had so much as a sniffle, even when my OH got a cold. The most worrying thing is PML, just like with Tysabri, if you are JC+ then a low WBC could leave you vulnerable to it. This I think is the reason they stop the Tecfidera when lymphocytes go very low and don’t recover.
So clearly I don’t get all the sciencey stuff. But if I were you, I’d be asking the Drs / nurses whether you should be stopping the Tecfidera. The other problem of course is that until your lymphocytes recover to somewhere in the normal range, they may not want to risk you starting another DMD. And judging by my experience, although the neuro staff said they’ll recover within a few months, mine still haven’t and it’s been 6 months.
It may be that you can get a fuller picture from your neuro team as to why they’re leaving you on the Tecfidera.
Let us know what happens.
Sue
Wow what a great response Sue. I dont know what my before levels were but I have been checked at 1 month and then 3 & then had my next bloods at the hospital (unsure of those results, but they must be as theked for them to be monitored!), but only I only found out when I got my letter from my gp and I didn’t even realise the extra test was due to low lymphocyte levels as I also have an underactive underactiwhich needs to be monitored regularly. I’m due to have my next test on 21st June so will find out soon what’s happening and have a plan of action, but may not find out until after my hols (I go on 25th June to Canada for an amazing trip to Vancouver, Penticton, Nelson & Calgary for my 50th Birthday celebrations. So I might not find out before I go what my results are. I’m thinking if my levels don’t pick up I’d like to think my neuro will support changing to Lemtrada, as this was my preferred choise, but was unable to have it as although I have been diagnosed for 11 years this was my 1st DMD & I was told it wasnt a 1st line treatment. What treatment are you changing to? I think I’ve read they dont have to wait for your levels to climb back up as the drug effectively kills off everything before reboiting our systems!
Not sure I would be keen to jump on a plane to Canada with lymphosyte levels as low as yours mayby check with your ms team ,
I’m glad my reply was helpful.
So it’s possible your lymphocyte levels haven’t been low for months and months. I suggest, have the blood test in June, have an amazing trip (my 50th in January, still deciding whether to go away for it!), then if the levels are still low when you get the results come off it.
I don’t know if I’d be too keen on Lemtrada after having MS for 11 years. Plus, did you mean you have an underactive thyroid? If so, is it an autoimmune condition? Ie Hashimoto’s? Your neuro may have to get specialist advice on taking Lemtrada if you already have an AI thyroid problem. I had Graves’ disease in my early 20s (auto-immune overactive thyroid) and the surgery that cured that left me with an underactive thyroid. My neuro said he’d need to enquire further as to whether Lemtrada was a good idea given that the most common side effect of Lemtrada is AI thyroid disease. You are probably right that you could start Lemtrada before your lymphocytes recover, but whether your neurologist wants to take the risk …
Have you considered Tysabri instead?
I suspect that I am now out of options re DMD. I’ve already had Avonex, Copaxone, Tysabri and Tecfidera. I’ve had hepatitis caused by drug reactions 3 times, leucocytopenia, cognitive problems on Interferon, previous auto immune thyroid disease and MS for 19 years. Oh and I’m really quite disabled with a fair amount of progression. Not a good candidate for a risky DMD!!
Sue
I wouldn’t give it a second thought. Low lymphocytes are something you don’t want, you maybe are slightly more open to infection, but once you’ve run it past your GP or asked your neurologist (maybe just phone their secretary to get a message through) if you’re safe to go, then you’re OK. It’s just in order to ensure you’re not travelling against medical advice in order that your insurance is valid.
I went to India on holiday when I had very high liver function test results as a result of Tysabri. For a week before we went I was having blood tests everyday, my Neuro started out scratching his chin and saying, “oh I don’t know about going to India” and ended up saying, “go, but if you have any signs of liver failure get to a hospital!” This was the day before the flight. And we had a fabulous time with no medical problems beyond the usual stuff that comes with MS.
Sue
Eek! This thread has scared me slightly or rather scared me a lot! I was on Tec but had relapses so switched to Gilenya in Jan this year. In the first month my lymphocytes went down to 0.3 and are currently at 0.2. I’m being monitored monthly. My ALTs are raised as well. I’ve had infections in this time. The neuros don’t seem to be concerned about the low levels. Not sure whether I should shout my concerns a little louder?
Hi Fishgoose
Well, my natural instinct is to say you should stop the Gilenya. Your lymphocytes are lower than mine have ever been.
But, maybe there’s some reason why they’re not so worried?? Perhaps ask them?
If it’s the Gilenya that has given you the raised ALT/LFTs as well, then maybe you could be a little more bolshy with regard to what’s going on with your body?
It’s hard to know when you don’t know the drug so well.
I would suggest talking to your MS nurse (if you have one?) or your neurologist? Or their secretary if you can’t get anyone else?
Sue x
Thanks Sue, I will ask again. They are monitoring me closely but I haven’t actually asked the question why they are happy to leave me at 0.2 so I will x
Thanks Sue, I am checking in with my GP next week so will try and get clarification on travelling to Canada then. However, despite having low lymphocyte levels, until this week, that is, I have been healthy with no sign of catching the usual winter bugs that fly around the office! The tablets I came out of hopspital with (for a possible ulcer) seem to be doing their job and I’m not waking in the middle of the night, in absolute agony, anymore, just a bit of heartburn while eating. I shouldGP bcatching up with my GP next week anyway so will try and get clarification on travelling to Canada then. Thanks. Sharon x
Mrs hilly Billy and I went to Canada the last time in 2007 ontario wonderful place I cleared it with one of the gp,s
I was there a week and started to feel funny just not right then I started getting headaches and sore teeth went to our
Daughters docter who asked when we were going home it was only 2 days later the flight was horrendous my body was in agony splitting headache we got home on Sunday went to a&e spent 2 days in hospital 2 weeks of work with a sinus infection
Own gp told me you should not have flown with your lymphosyte level witch was . 5 I take methotrexate, levels still around .5
I have not been on a plane since .
It was after this that my health got worse and ms was suspected.
I’m sorry to hear that. Having thought about it some more, I can see that a lowered immune system might leave you open to more infections than usual and air travel is notorious for spreading bugs around. But having said that, I’ve gone through the whole winter infection free whilst having lymphocyte levels of 0.4 - 0.6 then back down to 0.5 and I’ve even even had a husband with a nasty cold as well as seeing others with viruses. (And I couldn’t have the flu jab this year.)
I don’t think having low lymphocytes is a good reason to cancel a fabulous holiday so long as ones Dr agrees that it’s not risky. Maybe ensuring absolute cleanliness, using antibacterial hand gel very frequently and where possible staying away from anyone who is sick is all a person can do. But so long as insurance in unaffected and you don’t go against doctors advice then I would still fly now.
Sue
Hi hillybilly, whilst I understand the risks involved in flying with low lymphocyte levels, like Sue, I too have remained virus/infection free. I did have the flu vaccine in October before I started Tec though and I also follow a very healthy lifestyle (i follow a vegan diet with fish & various vitamins). Once ive spoken to my GP, I’ll update this thread incase it’s of use to someone else. Thanks guys for your input.
Enjoy your vacation and enjoy canada take care g