Forum

Coming off Rebif

Hi Everyone,

Hope that you are all well. I just want some advice really. I’ve been on Rebif since Feb following a CIS diagnosis. They have been keeping a close eye on my white blood cells as these have been up and down but always on the low side. Anyway, my neurologist has just called me to say that my levels have dropped again, to take a treatment holiday, repeat bloods in 2 months and then see her to discuss treatment options. I had an MRI in November which was unchanged.

I can’t help but worry about relapsing whilst not on treatment and had thought that I wasn’t eligible for many options. However, she mentioned tablets so wondering if anyone else has switched from Rebif and had oral meds with a CIS diagnosis. My symptoms are sensory and mainly at night but haven’t resolved since starting last June. I did have an episode of pins and needles in my lower legs/feet in 1999. This hasn’t been included for diagnostic purposes as difficult to rule in or out as only had MRI lumbar spine.

I have to admit to feeling a bit all over the place since she called.

Thank you for reading.

Edited to add that I picked up neurologist letter yesterday and she mentioned that we will discuss the updated McDonald Criteria 2017 when I see her in clinic in 2 months. Looking that up it allows for MS diagnosis from positive LP plus lesions disseminated in space but doesn’t need time too. Guessing that’s why I’ll be eligible for different treatments as I’ll be diagnosed with ms.

Also my planned laparoscopy booked for tomorrow has been cancelled due to my low wbc.

My GP has signed me off for 2 weeks as I’d been feeling rough and just put it down to the Rebif but maybe it was that plus low WBC. Had been relying on a few weeks off work post op recovery to get some energy back. Be good to see if this improves stopping the Rebif.

If you’ve got this far, thanks for listening.

Hi Smurf

You’ll probably not be able to take Tecfidera if you’ve already had low lymphocytes. This is a problem with a few of the drugs, ie causing lymphopenia. Hopefully they’ve not gone too low or take too long to recover. Do you know what the level was? Normal range is 1-3 (somethings I don’t understand). On Tecfidera mine went to 0.4 and stayed there for over a year. They are only just normal now two years after coming off the drug. (I’m now seen as SP and ineligible for DMDs - it’s partly because I’ve run out of DMD options!)

But other drugs are not known for depleting lymphocytes. It does sound as though your neurologist is up to speed on the revised McDonald Criteria, so chances are there will be lots more (and more effective) DMDs available to you.

What my neurologist told me was that while lymphocytes are low you are possibly protected to some extent from relapses anyway. The argument is that your lymphocytes are part of the white blood cells, which fight infection, and also mistakenly attack your myelin (heavily simplified version as I sort of understand what happens but can’t even start to explain it!). So if your lymphocytes are low, there’s less in the white blood cell army to attack your myelin and cause relapses. Or that’s roughly what I understood.

Hopefully your bloods will be OK after a couple of months and you can start on a new DMD.

Sue

Hi Sue, my WBC were 2.6, neutrophils 1.6 and lymphocytes 0.6 on Monday. They were rechecked yesterday and are 2.9 1.8 and 0.7 so at least up not down. They were rechecked as I was booked a laparoscopy for endometriosis today. That’s been postponed until January as gynaecologist still feels too low to safely proceed. Neurologist thinks they’ll recover in between 1-2 months.

On the one hand, I’m pleased that my neurologist seems to be using the latest criteria, I’m still nervous about actually being diagnosed with MS. I know that probably sounds crazy as nothing has actually changed and my MRI has been unchanged since August 2016. At least it’ll give me access to more effective drugs although not sure which ones if my WBC has already been affected by Rebif. Does it always follow that if one drug lowers them then others will? I wonder what I’ll be eligible for I would rather know so could research before seeing neurologist. My MS Nurse is on leave this week so I’ll try and speak to her next week. Any ideas what I’ll be eligible for?

i had thought, like you, that low WBC was a good thing in a way as less of the buggers to do damage.