Hi Sue, I am also in a similar position to you. My bloods have been monitored every 6 weeks…repeatedly low for 8 months lowest dropping point was 0.3 stabilised at 0.5. On Friday I was given the news that I should consider my options…staying on Tech with monitoring or Trying Gilenya. I have to make the decision by Monday!!! I’ve read up on Gilenya and from what I gather it to lowers lymphocyte counts so I’m a bit confused. I’m not sure what to do… Should I insist on an appointment at the clinic to talk it through? Should I ask to be tested for Jcvirus as this increases the risk of PML. Officially I’ve had RRMS for 1 1/2 years, 3 relapses, 1 while on tech…progressive left side weakness and fatigue. I see that you have also made a new thread about stopping tech which has lead to a rebound relapse…now I know that everyone is different so it may not be the same for me but I to have reasonably active Ms. Thanks in advance for reading my ramble x
Have you had this conversation with your neurologist?
The reason I ask is that when I saw mine just after I stopped the Tecfidera, he was saying that 1) we need to wait for lymphocytes to go back to normal before trying anything else and 2) he seemed to be saying that a drug that also lowers lymphocytes would be out anyway.
Have you been on any other DMDs? Why isn’t he suggesting Tysabri, or even Lemtrada? My Neuro has even suggested Lemtrada to me in spite of the fact I’ve had MS for a long time, am pretty disabled and have previously had auto immune thyroid disease (one of the most common side effects of Lemtrada)!
Plus, how long has your lymphocyte level been at <0.7 or 0.8 even? If it’s more than 6 months you should probably stop the Tecfidera. That’s the message I got loud and clear. If it’s only been a couple of months and is starting to go back up, then maybe they’re right. Mine had stayed stuck on 0.4 for at least 4 months and possibly longer, given that the blood tests are 3 monthly. If yours is starting to improve, so long as they do monthly blood tests and it continues to go up, then you might be OK. I do get the impression that so long as it improves to about 75% of your baseline within 6 months ish then stay on the drug. But if it stays at under 0.7 for 6 months without going up again, then it won’t improve.
But, you could do with hearing this from your neurologist, rather than a scaredy cat fellow MSer who knows no science other than what she’s picked up (and probably only half understood) along the way!!
Good luck with it, whatever you do.
Sue
Lemtrada’s the drug of the moment, isn’t it? My neuro was keen for me to try it (that’s the good neuro, not the useless one). When I read the results of the original trials, I decided it wasn’t for me because of being older, having had MS for at least 16 years and being quite disabled already (haven’t had thyroid problems, so slightly better positioned than you, Sue, but not much).
Mine was even suggesting it the other day when I saw him about coming of Tecfidera. He said he’d need to get some advice about the thyroid issue. I think it’s too risky given length of time I’ve had MS and current disability but if it’s the only DMD option I’m left with then maybe!!!
Never say never, that’s today’s phrase!
(Obviously tomorrow the phrase is likely to be ‘not on your nellie’!)
Sue
Hi Sue Thanks for responding. Haven’t had this conversation with neurologist just the Ms nurse who rang me on Friday to say my bloods are still 0.5 and that I need to think about either staying on Tech even though there is a risc of PML or going onto Gilenya. She did say I could request a clinic visit if I needed to and that she would ring me on Monday to see what I had decided. No mention of any other treatments. I’ve only been on tech which I went onto not long after diagnosis. I’m surprised that I have been allowed to stay on tech as long as I have because my bloods have been 0.5 and lower for roughly 8 months maybe more. Anyway haven’t had the phone call yet and to be honest I’m a bit relieved as I’m not ready to decide. I understand err stand that they are extremely busy and I sympathise with them but this is a pretty big thing for me right now and need to know that I’m choosing the right thing. My Ms nurse briefly went through what to look out for regarding PML (one side weakness, change in personality, change in mood, headaches etc) but to be honest it’s a bit vague. I already have one sided weakness and as my husband hinted when I told him I have a pretty changeable mood at the best of times…bless him. Take care all x
In your situation, I would be making the decision unilaterally to stop Tecfidera, to push for an urgent meeting with your neurologist and maybe an MRI. If you already had the one sided weakness before starting the 'Tec, then the MRI is less urgent, but if it’s new, then definitely get one. I assume your husband is like my very own special one, making the comment about changeable mood!! Mine would probably say the same, but I’m not going to give him ammunition to fire at me!!
Rather than wait for the nurse to call you, phone her if you have the number, otherwise, phone your neurologists secretary, explain the situation and ask her/him to arrange an urgent appointment. I truly don’t think you should hang about because the risk of PML (especially if you don’t know your JCV status) is too high.
Sue x
PML is a serious thing but only if left unmonitored or untreated for a sustained period of time. Do not panic; there is no real cause for immediate concern, but i would hope you exercise proactive efforts to determine what is best for you.
Positive JCV along with very low lymphocytes can elevate your risk of PML. Knowing this, i would expect a health care professional to prioritise your being tested for JCV far sooner than simply telling you of the indications of PML!
Prevention is better than cure. Good luck!
For more information about PML and lymphopenia, see Prof Giovannoni’s blog: Multiple Sclerosis Research: ClinicSpeak: more on PML and lymphopaenia
It’s quite interesting and actually reassuring.
Sue
Hi.
I hope nobody minds me asking but I need abit of advice please my bloods have been between 0.5 and 0.3 for the last 8 months. For the past 2 months I have been suffering from bad pain in my ear and it feeling muffled, my head feels very hot even though to touch it it doesn’t. I also keep going very light headed as if I’m going to faint and keep feeling vacant as if I ain’t with it. If that makes sense. I am seriously thinking of stopping my techfidera. Been phoning my consultant and keep asking them but not getting far. Is there any side effects from stopping them. Hope you can help me please.
No side effects from stopping. Why on earth are they keeping you on the drug with lymphocytes that low for this long?
I have no idea whether your recent symptoms are related. But I would get an urgent appointment with your GP and / or neurologist and arrange to stop the Tecfidera.
This is obviously just my opinion, not medical in the slightest, but with very low lymphocytes you are at risk of infection.
Sue
Thankyou ever so much for replying. I’m just going to stop them. Fed up of feeling rubbish. I was diagnosed when I was 21, I’m 40 now. Still walking so I must be doing something right.
I am guessing that you have tested negative for JCV and thus, are not at immediate risk of developing PML, hence the reason for why despite your low blood count, you continue to be prescribed Tecfidera?
I do not know if the symptoms you report can be attributed to Tecfidera. But it is easy to see how stopping them might help you investigate your current situation.
I do not believe there will be any ‘withdrawals’ caused by simply stopping Tecfidera. I understand that it has a very brief ‘residency’ in your body (once metabolised, it is mostly exhaled!!!) and so irrespective of how long you have been taking Tecfidera, it can be completely removed from your system within about 16 hours! Of course the time required for any blood count to recover can take a good time longer.
In any event, you really ought to gain more qualified advice than that from just a bunch of anonymous, albeit well-meaning and experienced, interweb bods!
The very best of luck!
Hi Paolo
In the U.K. there is no testing for JCV before or during Tecfidera use. Basically, we rely only on Lymphocyte testing. This is why most neuros have a cut off point of maximum 0.5 Lymphocyte level. And Prof G at Barts thinks it should be 0.8. Having said this, there are still only very few people who’ve had PML as a result of low Lymphocytes caused by Tecfidera. It’s more about the risk of other infections.
Sue
Yes, i think the risk of PML has been over stated due its potential severity. It is an absolute, worst case scenario of an extremely slight probability.
I was surprised that such a low blood count was being noted and tolerated for such a long time, but in all honesty… what the hell do i know? I hope my above post didn’t suggest any cause for concern.
Hi
i haven’t taking my techfidera for a day and half. Feel ok so far. Still waiting for my consultant to get back to me even though I have phoned today. Will let you know what they say. Thankyou for the advice
Keep on trying to get a message to your neuro, they can sometimes be a bit difficult to get hold of, I’ve found the trick is often to get their secretary / admin team on the phone, get that persons email address and send them an email to be forwarded to your neurologist.
Also, you should maybe see your GP. You’ll need to keep having your blood tested for lymphocyte levels as it will probably take some time to come back up to normal levels. And ask for their opinion of what to do with regard to very low levels of lymphocytes, i.e. protecting against infections etc. It’s something they should have in their records anyway.
Ask about the flu jab too, I asked one of the MS nurses the other day if I should have the flu jab this year. She said that it wouldn’t hurt but probably wouldn’t work as you need lymphocytes to react to the flu jab.
I didn’t have any downsides, or side effects from stopping Tecfidera, in fact my neuro said that the low lymphocyte level should keep me protected from relapses to some extent, because if your immune system is not up to scratch, then it won’t be protecting you from infections and viruses, but neither will it be beating up your myelin.
Sue