Forum

Rebif and blood counts

Has anyone suffered with low White cell or low platelet counts whilst on rebif? I have suffered both but my platelets are very low at the present time and I’m worrying that I might get taken off the Rebif. Has this happened to anyone? Would they try me on a lower dose of Rebif perhaps?? Or maybe try a rebif " holiday" ie. stop taking it for a period of time. Just thinking someone else out there has probably had similar problems. Many thanks. Roger

I’m sure that some on here have (I remember reading it), but I can’t offer any advice myself, sorry. I did want to say that if you have to come off Rebif, there’s always Copaxone - it doesn’t affect blood counts. I hope someone else can tell you what to expect. Karen x

I have been on Rebif for a few years and my white blood count is low. I think my MS nurse said that was normal for some users - she didnt seem too concerned anyway and my GP’s surgery who carry out the blood tests seem to think it is within acceptable levels. (Obviously, you need to check your own health with your own GP as we are all different)

Thanks for replying. I think my platelets have fallen steadily since starting rebif. Can’t believe I’m the only one this has happened to. Also … How can you reply to replies on here? You used to be able to on the old forum! I might ask this question about platelets again later on in a week or so in hope of getting a few more replies. Thanks anyways. R

Hi Roger The same thing happened to me a few times. My neuro would generally get me to take a holiday of a week, after which my blood count would always go up. However, it few too many times for my neuro and she eventually told me to stop it completely. I was disappointed as it had been extremely effective for me. However I’m now on Tysabri, which if anything has been even better. You may well be fine, but in case you are taken off it there’s always other DMDs to try. Dan P.S there’s no longer the ‘reply to replies’ option. The best you can do is use the quote option in the top right-hand corner of each reply. However, I may be wrong about this but I don’t think that sends an email notification, so it’s possible the person may miss that you’ve responded to what they said.

Hi Roger Agree with what the others have posted, when i was on Rebif mine changed but was not anything to worry about according to my neuro/MS nurse, but did need to be taken into account if results were being reviewed for any other reason ie if your own normal range for an analyte shifts due to meds/illness will effect how changes are monitored, so if rebif iscausing you to have a low white cell count this becomes the stabilised norm for you, so if an increase due to infection perhaps brings your result up into the “normal population ranges” whoever reviewing the results need to be aware of previous results and look at the trend rather than dismissing it as the norm Hope this helps i have explained this ok, really should be in bed and usual cog fog now amplified by tiredness R xo
he_funk wrote:

P.S there’s no longer the ‘reply to replies’ option. The best you can do is use the quote option in the top right-hand corner of each reply. However, I may be wrong about this but I don’t think that sends an email notification, so it’s possible the person may miss that you’ve responded to what they said.

if the original poster or anyone replies to that post check the (Notify me when a reply is posted} option below the text box they should be notified if anyone else posts a reply to that thread. This option is now working, though doesn’t take into account who you actually are replying to within the thread Hope this makes sense R xo

he_funk wrote:

Hi Roger The same thing happened to me a few times. My neuro would generally get me to take a holiday of a week, after which my blood count would always go up. However, it few too many times for my neuro and she eventually told me to stop it completely. I was disappointed as it had been extremely effective for me. However I’m now on Tysabri, which if anything has been even better. You may well be fine, but in case you are taken off it there’s always other DMDs to try. Dan Thanks Dan. I’ve been relapse free for over 2 years so Rebif has done the job well. Never tried a rebif holiday to see if it helps- a good idea which I hope my consultant thinks of too. The platelets can’t be allowed to go too low I guess. Will wait for next results. Many thanks. R