Hi all, I have been lurking for a while and have been taking in all the information on this great forum, having recently been diagnosed with RRMS.
I now have to make a decision on medication to slow my MS and relapses down.
I have been told that my neutrophils are border line - 0.1 below normal. I am worried about PML when blood tests show below normal results for white cells. My lymphocytes are at normal range.
I have the other option of going on Copaxone injections which my other half thinks would be the safest bet.
Just wondering what you all think - Copaxone or Tecfidera?
I am not a doctor and i do not know what neutrophils are.
I do know that Tecfidera is claimed to be the best, first line drug out there at the moment, which comes without the additional burden or complexity of needles and managing injection sites etc.
PML is a reasonable concern and therefore something worth guarding against. thankfully, health professionals share this worry and if you elect to use Tecfidera, you will have to have your blood cells counted (and your liver function checked) every 3 months.
When weighing up the immediate benefits, against the very measurable and foreseeable potential costs, it becomes an easy decision to make. At least, it was for me.
The thing about white blood cells is that ‘normal’ can be different for everyone. So having neutrophils just below normal but normal lymphocytes shouldn’t necessarily prevent you from trying Tecfidera. PML is a very very remote threat and your white blood cells would be carefully monitored in any case so any further dips would be cause to take you off the drug.
I started Tecfidera with slightly lowish lymphocytes but the docs were happy for me to start. After a few months, the lymphocytes did decrease so I had to stop the drug, but I wouldn’t necessarily rule it out.
The best reason to choose Copaxone over Tecfidera though is that if you find you continue to relapse on Copaxone, it’s much easier to switch over to Tecfidera. If however, your white blood cells did adversely react against the Tecfidera, you might have to wait till they recover before starting any other DMD. And it can take some time for the lymphocytes / neutrophils to recover. I stopped Tecfidera in November last year and my lymphocytes are still low. They’ve recovered slightly but are still outside of the ‘normal’ range. So if I were to start a new DMD, I’d have to wait for the bloods to show complete recovery.
And many people take Copaxone for years and find it suits them, has few, if any, adverse effects and prevents relapses very well. I suspect that we are all a bit anti the old style drugs, because the expectation is that they only reduce relapses by 30-35%. We should remember though that this is an average, for some people it’s higher than this (and of course for some people they hardly work at all).
I suggest, you talk through your options with your MS nurse, and maybe your neurologist, think about how you feel about injecting as opposed to pills, look at the expected results and adverse effects and remember that whatever you choose you can always swap later on.
Thank you all for your replies. I will speak to my nurse again and see what she thinks.
Decisions, decisions, decisions but will get there. I haven’t had too bad a time (yet) (mostly clenching on scalp and upper body and burning on neck) as I can see some of you have had, with this horrible disease, but I have got to bite the bullet now and get things moving.
I am so grateful for this site. A wealth of knowledge and advice.