2017 making a plan

January 2017

So how to get started on some sort of disease modifying treatment (dmt)?

Made a list of all available licensed dmt in UK. One by one I struck a line through them all as either ineffective (interferons, glatiramer), contraindicated (fingo), unsafe due to lymphopaenia (fingo, dmf, teriflunamide) or unavailable as I wouldn't qualify (alemtuzumab, natalizumab).  There were some new things in development (ocrelizumab, daclizumab) but I doubted I'd qualify for these either.

Caught up with some history on the Barts blog over Christmas and read all about the Cladribine4MS campaign. Off-label cladribine sounded promising for someone like me with lymphocyte counts on the low side. Looked back at all my historical blood tests (of which there have been a lot, what with dmf, attempts at starting fingolimod, plus an historical spell of microcytic anaemia). Entered all the lymphocyte counts into a spreadsheet.  Generally, my baseline count seemed to be about 0.8 to 1.1. H'mm well let's hope it's up nearer 1.0 and hopefully I might be ok for cladribine? According to the Movectro datasheet the required baseline lymphocyte count for starting a subsequent course is 0.8.

Next neuro appointment already arranged for 15 March.  Booked blood tests for end Jan and follow-up appointment with GP.

Blood tests 25 Jan - all normal except for lymphocytes 0.60 🙁.

Booked second test for 9 March. My lovely GP meanwhile was absolutely super and agreed plan of action to (a) ask hospital if willing to prescribe off-label cladribine or if that failed (b) refer me to Barts.
GPs, in my experience, are never perturbed by low lymphocyte counts. Apparently they're really common in routine blood tests in General Practice and, unless signs of unexplained infections, nothing to worry about.

March 2016

Full blood count 9 March - lymphocytes 0.59 🙁.

Plan (a)
Hospital appointment 15 March, Didn't see my usual neuro (whom I really like and respect) but equally pleasant MS doctor whom I also get on well with.  I like going to my local MS centre, a small unit for MS, Parkinsons and dementia. I prefer sitting in a quiet waiting room with a few other neuro patients rather than hoards of folk for all sorts of miscellaneous clinics.
Disappointed with appointment on this occasion. Dr confirmed no treatment available for me (first time I've fully grasped the significance of being diagnosed 'secondary progressive').  Nor would they prescribe cladribine. Not sure she grasped the concept of 'off-label' as she kept talking about NHS England. Probably me not explaining very well, but I did leave the Barts NHS info. Maybe it's red rag to a bull leaving info from another neurology team? Next appointment in six months time. I'm not at all sure why.

Plan (b)
Back with GP. Prior to referral to Barts thought I should get lymphocytes checked out.  GP agreed little point going all the way to London to be told sorry, you're lymphocytes too low and she gave me a private haematology referral.  I asked for private (i) to speed things up and (ii) was aware haemaologist probably had more serious things to do (like treat paople with leukaemia) and I wasn't really ill, haematologically-speaking anyway.

May 2017

10 May. Saw a very helpful  haematologist who was generally pretty reassuring and said that, yes indeed, many people have 'low' lymphocyte counts. He explained that the concept that counts follow a normal distribution with 'normal' levels taken as the middle 95% values is incorrect as in practice the distribution is skewed to the lower end and number of people with values less than 1.5 is in fact high. So my GP was kinda right when she said 'everyone has low lymphocytes'. Sounds to me like the tables should be clarified as they cause a lot of confusion. So that was likely all it was. Anyway, he gave me a thorough check over (lymph nodes, spleen) and I didn't escape without about a million tubes of blood being taken 😉.

Here are the results:

Full blood count - everything normal except lymphocytes 0.50
HIV serology negative (I could have told him that, but no harm in checking)

Lymphocyte profiling (in absolute values per microlitre):

Lymphocyte profile


So what does this mean for cladribine? I really don't know.   But having come this far will press on and ask GP to continue with referral.

♧♧♧


That all done, time to head off with Charlotte for the Tandem Club National Rally in Yorkshire...

Near Skipton, alongside the Liverpool and Leeds canal. Spent a lot of time along the canal, it was the only bit of flat cycling we could find! This is why we live on the Somerset levels, the clue is in the name 😉.