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6 months ago

Hello, I first met with my neurologist and ms nurse in September 2018. I’m due to start my treatment in March 2019.

6 months ago

@wolfbite1 it depends what treatment you’re on, most treatments need to be approved my medical aid, for me the first time I started treatment it took a few months to start

6 months ago

@wolfbite1 , different treatments have different requirements. Your MS Nurse will be able to give you some idea of timescales.

6 months ago

Could be anything from a few days to a few months, depends what treatment you are expecting. Tablets or self administered injections usually cone quicker.

6 months ago

@wolfbite1 To echo the rest of this thread, the length of time between diagnosis and treatment will depend on the type of treatment you take and the prep (if any) required before beginning treatment.

By way of example, I was given a formal diagnosis in Jan 2019. My neuro expects to have me on treatment in late April/early May of this year but would have preferred to have me begin sooner.

In my case, the delay is because I’m starting with Ocrevus and need to take a range of ‘live’ vaccines before I begin as these can’t be given once I start treatment. My work requires travel (making Ocrevus particularly attractive as I don’t need to carry pills or inject regularly) so the list of vaccines, from the mundane to the exotic, is quite long and needs to be staggered over about six weeks.

There have been some hiccups with the vaccines, causing further delays. While this is particular to my case, others I’ve spoken with – on different DMTs – have found that the road to treatment isn’t without bumps. So there’s benefit in getting your head ready for some ups, downs and detours on the way to receiving a DMT.

Similar considerations might need to be made for some of the other treatments (this forum has wiser and more experienced heads than mine in this area).

Be aware that you might need to stay on whichever treatment you choose for quite a bit of time – or there may be a wash-out period which delays changeover if your first treatment isn’t suitable.

So, while it’s tempting to jump straight into treatment – and this might, depending on your priorities, be the best approach for you, particularly if it cuts down on anxiety around the diagnosis – it’s worth taking a bit of time to research (as you’re doing here) and balance the full range of you personal priorities against the varied restrictions which each DMT ties you into.

A long way of saying ‘horses for courses’.

Best of luck.

6 months ago

@doyles2 echoes my experiences regarding starting Ocrelizumab and my sentiments regarding treatment.

I had a paranoid – in a good way – doc. 2 vaccines, 14 blood tests, a chest x-ray and an ECG. Then I started it. There is an increased risk of the monoclonal antibodies – the so-called MABs – in your susceptibility to infection. The administration protocols are evolving to mitigate this as much as possible.

The Merck Sharp & Dohme (MSD) pneumococcal vaccine has supply issues in the UK and I got the doc to agree to me taking a different 13 valent one rather than the 23 valent MSD offering – hazy here but believe it refers to the spectrum of nasties that the jab covers – made by Evans. The clinical specialist pharmacist has said she’d prefer it if I had the 23 valent one before my next infusion in 4 months time.

Was on Tecfidera for 9y previously and had a 5-day washout, so although there was a ton of planning it was a pretty smooth segue from one to the other.

Best of luck.


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