Continuing Low Lymphocytes Months After Stopping Tecfidera

Everyday living
1

I started Tec in Jan 2015. My Lymphocytes dropped under to 0.5 at 6 months and stayed there, so I was taken off it end December 2015.

I have already failed all the CRABS, and I am JC + with a high titre of 4, so my Neuro wants me to try Lemtrada. This is also a clinical decision based on my last scan in March 2016 showing many new active lesions, and activity in several old ones, so I’m Highly Active RRMS. I was Dx in 1995 but and unusual in that I’ve had a couple of 4-5 year renditions and stable periods in my 21 years since diagnosis. My first relapses was in 1991 at age 17, but my relapses were sensory and so mild that I was misdiagnosed for 4 years and so I had no DMDs for the first 11 years of MS until 2002.

At the moment, my lymphocyte count is still, after 8 months low, and along with my total WCC, bouncing around for no inexplicable reason. It got to 1.1, then dropped back to 0.8, then 0.7.

Last 4 weeks results were WCC 4.7 L 0.8 W3.7 L1.1 W4.7 L0.7 W3.1L0.7

This is preventing me having Lemtrada. I was due to have it 8/8, but now it’s put back until October to see if it comes up enough to safely have this treatment that I desperately need.

My questions to other friends are, besides of course, your own story which is the most important to me:-

  1. How long does it take for the counts.to recover after Tec

  2. Why is Tec affecting the immune system in this way

  3. If my Immune system is “suppressed” , why are my scans showing so much active inflammation?

  4. Is this why my titre level of JCV is so high, and am I still at risk of PML even though I’m not on Tec anymore?

So sorry for the long post, but I’ve never in my 25 years of MS, felt so afraid and alone with it xxx

2

Oh Glory

I do feel for you. Mine are still very low too. But I’m not HARR, not as far as I know JCV+ (lasted tested about 5 years ago) and not a candidate for Lemtrada (as you know from previous threads).

I don’t understand why on earth the neuros would say so blithely “oh they’ll be back to normal within 3 months”. Which is what they said to me and I presume you too. I don’t think they knew, it’s still quite early days for my prescribing centre so I was possibly the first low lymphocyter they’d experienced.

I so wish I’d been science minded, I might have stood a better chance of understanding the whys and hows about it all.

I don’t really understand why the white cell count is important. Mine has generally been a bit lower than yours. Over the last 6 months mine has been 3, 2.2, 2.4, 2.3, 2.6 and 2.8. My lymphocytes have been 0.5, 0.6, 0.6, 0.5, 0.7 and 0.6. My neutrophils have also been reported as below the normal range for the whole period, and a GP did once tell me that they are more important when it comes to fighting infection!!! So why do they go on about lymphocytes?

And given that my Neuro said while lymphocytes are low, there’s less inflammation, why are you still showing disease activity?

I can’t answer any of your questions, all I can do is add to them.

And utterly, utterly sympathise with you over the whole Lemtrada issue. It sounds like that’s the only DMD left for you. My options have already completely gone. So I do get your situation. If I were where you are, I’d worry too. But then I think I’ve just become more philosophical about it. My MS is going to do what the f*** it pleases, I’m just going to have to live with it.

I truly hope your lymphocytes come back up and that you can have the Lemtrada as soon as possible.

And I wish someone could answer your questions - I’d rather like to know too!

Sue

3

hi glory

i saw your post this morning but because i can’t offer any answers, i left it.

i’m just coming up to 12 months on tecfidera in october.

my way of dealing with it is to cross my fingers.

good luck

carole x