Stop press - prolonged lymphopaenia post dimethyl fumarate (Tecfidera)

News to me this one! When I presented at hospital in March I was told my  lymphopaenia (0.59) at 14 months post Tecfidera was unrelated to the dmf and to ask my GP to refer me to a haematologist. Which I did.

Learned this week from the Barts blog
http://multiple-sclerosis-research.blogspot.com/2017/07/clinicspeak-casestudy-lymphocyte.html that prolonged lymphopaenia (months/years?) is common and it is possible some people may never return to baseline. Demonstrates the importance of MS specialists keeping in touch with latest research and clinic findings from other centres. Simply following the Barts blog is one easy way to do that for a start.  If I as a mere patient can pick stuff up then anyone can.

Anyway, this requires a spot of replanning. My treatment preference is still off-label cladribine:
http://multiple-sclerosis-research.blogspot.com/2016/01/the-special-one-cladribine-acting-in-cns.html


Neurologists look for a baseline of 0.8 (or 800) depending on which scale* you are using. Indeed, this is the figure stated in the 'Movectro' (old brandname for clad) datasheet. Factor in my lymphocyte profile (lacking CD8 T cells, they keep a look out for viruses and tumour formation) it would be good to get back to my old baseline of about 1.0+.  I think it is a case of being a patient patient. Another year or so shouldn't make much too much difference in the grand scale of things?

Maybe not, but what if investigations show loads of active inflammation and further damage? Especially in brainstem and cervical spine (where I know there are some pretty big lesions already) - fairly critical points I understand.  Our brains are pretty amazing at re-routing around damage just like as seen in people post stroke, but not many rerouting options in spinal cord. So if things are looking nasty there are two possibilities.

Rituximab is a MAb used for rheumatoid arthritis. Would involve hospital infusions every 6 months to a year ongoing.

Autologous Stem cell therapy (AHSCT) is essentially collecting some of my haematopoietic stem cells and putting to one side to use later (Blue Peter style) then zapping my immune system with some pretty serious chemo. They then stick the stem cells back in and wait for them to grow into immune cells.  There is a centre in London currently taking NHS referrals but am pretty sure I would not qualify. But fear not for £££££ there are many centres in such far flung places as Mexico, India, Russia etc offering the same.  Would require some serious research as there are any number of variations in how treatment can be carried out and some of the clinics are probably pretty dodgy 🤪 The other thing to bear in mind is, although apparently safer these days, it's still on the risky side plus it's only gonna stop new damage - many of my nerve cells are already primed to die and this would not be reversed.

H'mmmmmmmm....

*lymphocytes were traditionally measured in number per litre. These are pretty huge so you get numbers like 0.8 x 10~9 (that is meant to show 10 'to the power of' 9). The modern way of measuring is number per microlitre so you get numbers like 800.