Hi, I hope you’re all as well as possible with this horrible MS!!! Can anyone tell me what low lymphocytes 0.62 means as it seems 1.2-3.65 is the ‘normal’ range. Also urine sample positive to leukocytes but, the result was negative when sent for microscopy. I am taking Tecfidera & haven’t had any of the known problems with it but, am generally feeling unwell & have a constantly runny nose since I started taking it in February. Sorry for all the questions but I know someone on here will know the answers.
Hi Helly
I am afraid I probably don’t know an awful lot more than you but I can tell you what I think it means. I have had a low lymphocyte count and am on Tecfidera too. Mine has gone from 0.7 to 0.8 which it seems to have stabilised at at the moment. I am having to have bloods tested slightly more frequently at every two months to make sure it doesn’t go down again. It should be higher but at the moment I am being monitored.
The reason I think the lymphocyte count is important is because it has something to do ŵith your body’s ability to fight infections. If it dips below 0.5 the chances are it may be recommended you come off Tecfidera, I guess something in Tecfidera or your bodies reaction to it, can effect the lymphocyte count. Anyway the main reason for the checks are that if your count is to low you are more vulnerable to something called the JVC virus which is dormant in probably half the population. However if you are more vunerable to infections there is a chance it could become active. It is precautionary but the JVC virus can cause, in rare cases, severe difficulties with the function of the brain a condition called PML. So to prevent that happening we have regular blood tests when on Tecfidera the idea being, I think, that if your blood count drops but they take you off Tecfidera, your blood count will come back up. Just having a low lymphocyte count (below 0.5) doesn’t mean you will develop PML it is just is a higher risk.
The tests are in place to prevent things like the condition called PML from happening it is very rare but knowing that it is linked to blood counts give them an early warning sign to stop it happening. At least that is my understanding hope it helps rather than worries you. Hopefully if my understanding is wrong someone can explain it better.
Mish X
Hi Helly
Mish has it roughly right. Your blood is tested for lymphocytes before you start Tecfidera and every three months while you’re on it. Essentially, when you first start, your lymphocytes are expected to dip below normal but then recover to come back within normal range. I’ve seen different scales that are supposedly the ‘normal’ range, but at a minimum, 1.0 is the lowest it should be.
When a person on Tecfidera has a further dip in lymphocytes, generally the nurses/doctors keep testing it for a few months to see if it recovers. If it doesn’t return to above 0.8 at an absolute minimum, then you’d end up coming off the Tecfidera.
The danger of low lymphocytes is that you are open to viruses, the most dangerous of which is reactivation of the John Cunningham Virus (or JCV). Many people have the antibodies in their system for JCV, which means they have encountered it in the past. You wouldn’t know that you’d developed the antibodies to JCV as it’s a silent virus. But, reactivation of JCV is what causes PML, the very serious brain virus that can disable or even kill. In general, the danger of PML is worse if you are on Tysabri, but there have been a couple of cases with people on Tecfidera.
I stopped Tecfidera a year ago because my lymphocytes went down to 0.4 and stayed roughly there for a couple of months. It has then taken about a year to go up to 1.0. Through that year, it went up and down to 0.5, 0.6, back to 0.5 and finally up to 1.0.
With regard to your second question about UTI and leucocytes, basically, leucocytes show inflammation but not infection. If you take a sample to the doctors and only leucocytes are raised, they’ll tell you there is no infection. It’s when nitrites and / or protein are present in the urine (generally with raised leucocytes as well), that they’ll tell you there’s an infection, send your sample to the lab and start you on antibiotics. If you have a sample with raised leucocytes only, the way to reduce inflammation is to drink lots and lots of water.
Hope this all helps.
Sue
Thanks guys for your answers. I have a consultant appointment next week so I’ll see what she says & maybe change my dmd. Strange thing is that I have started to feel better for the last couple of weeks having been on Tecfidera almost 7 months. So am now hoping my lymphocytes go up & I can stay on Tecfidera, I’ll put up with the runny nose! Regards Helly.