smurf69 05/12/17
Last reply 7 months ago
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 her letter today and she mentioned that we will discuss the update Mcdonald criteria 2017 when I see her in clinic. Looking that up, it allows for ms diagnosis from positive LP plus lesions disseminated in space but doesn’t need time too.

“Probably the one that’s going to be the most controversial,” he said, is the recommendation to use the presence of OCBs in cerebrospinal fluid (CSF) to make the diagnosis of MS in a patient with typical clinically isolated syndrome (CIS) who has clinical or MRI evidence of dissemination in space

Guessing that’s why I’ll be eligible for different treatment options as I’ll be diagnosed with ms.

Also, my planned laparoscopy booked for 7th December has now been cancelled due to my low wbc 😢

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stumbler
7 months ago

@smurf69 , you have to have a certain amount of trust in your Neuro that they are working in your best interests.

She seems pretty proactive in that she is already looking to the revised McDonald criteria for your benefit, to allow you to adopt an oral medication.

Try not to worry about a short treatment break. It’s only a short break that’s being considered, which will allow your body some time to recover.


smurf69
7 months ago

Thanks @stumbler,
I don’t post much but do read the forum and you always offer sound advice. My head totally agrees with you that I’m lucky that she’s forward thinking and seems to be willing to apply the most recent criteria. However, I can’t help feeling a bit wobbly by the possible diagnosis and treatment change especially when my recent MRI was unchanged so I’d relaxed about things recently.
I had been feeling quite rough but put it down to the Rebif maybe it was that and the low wbc. Had been sort of relying on a few weeks off work post op recovery to get some energy back. Spoke to my GP and she’s signed me off work for a couple of weeks in view of how I feel plus low wbc putting me at risk of infection given that I’m a health care professional.


stumbler
7 months ago

@smurf69 , it sounds like you have a good team, Neuro and GP, looking after you.

Just take this time to rest up and recharge your batteries,


smurf69
7 months ago

Thanks @stumbler, it wasn’t my usual GP so it took a while to explain my situation to her. However, she was brilliant and said she thought I needed some time off work to listen to what my body is telling me to do. It’ll be interesting to see how if I feel better off the drugs and whether my bloods recover and how quickly. Neuro said that she wouldn’t consider starting new treatment until my bloods were back to normal.


potter
7 months ago

I switched from Rebif to Tecfidera and had a month wash out period. My problem was skin rejection not low white blood cell count. Potter


smurf69
7 months ago

Thanks @potter, my neurologist said that it would be unsafe to start a new DMD whilst my wbc is so low. I must admit to feeling nervous without the Rebif but am hoping that the flu feeling goes soon. I’ve either felt like I’ve got flu or getting over flu depending on which day of the week it was. I’ve played it dish with the MS nurse and said it was manageable as it was with analgesia.
How long did it take for the flu effects to go for you once you’d stopped it?


smurf69
7 months ago

That should read down not dish btw ☺️


potter
7 months ago

My flu effects stopped immediately, I think your problem right now is probably caused by your low white blood cell count. I was so excited about changing to a oral medicine I might have not noticed flu symptoms. Don’t worry about typing errors we all have fingers that want to type the wrong words, as long as you can get your message across that is all that matters. Potter


smurf69
7 months ago

@potter, I’m reassured to hear that your flu side effects went straightaway. I just feel tired, stiff, achy and generally like I have a virus and have done for quite a while. Had bloods repeated today to confirm the decision re cancelling the op. Bloods still low but slight increase but op still going to be rescheduled.
I’m hoping that I start to feel better soon. Just have no energy at mo which isn’t like me.

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