Medications & supplements
I am NOT QUALIFIED to give advice - please remember this is MY experience. So, with that in mind, firstly talk to your MS nurse. They will discuss the possible use of any disease modifying drugs (DMDs) that may suit your condition. There are several new drugs going through trials which sometimes hit the headlines – talk to your consultant to get the facts, please don’t rely on the Internet.
I started injecting Rebif in July 2009; the support available is very good. Yes, I wasn’t sure I could cope with injections but I did, it wasn’t the highlight of my day but became just part of my routine. I swapped to Fingolimod (Gilenya) in February 2013, a once-a-day tablet and still take it (as at Nov 2021).
Low Dose Naltrexone (LDN)
Your MS nurse won’t talk to you about this as it is not a recognised medication for MS. Some consultants will talk about it but don’t (as far as I am aware) prescribe it (although I do know of one GP who does but they are an exception). Visit the LDS Research Trust site (http://www.ldnresearchtrust.org/) talk to others with MS and you then can make an informed choice on whether to give it a go. I started on LDN in Sept 2011 but then swapped to CBD oil.
Gamma-Amino Butyric Acid (GABA)
Lots of research and items in the press about links between Vitamin D and MS. Views vary on the use and magnitude of supplements – talk to your GP, a blood test may show up any deficiencies and they can offer dietary/supplement advice.
This is a steroid that the MS nurse can arrange for you if you are having a relapse. I have only had the pill version but others I know have attended hospital to have the treatment intravenously. I have had course of pills twice due to a relapse, and both times encountered side-effects. A leaflet is available to explain the side-effects, but sometimes this doesn’t reach the patient so ask for it to be emailed to you. My advice: be prepared! I know they do the job but I do suffer many of the side effects for a week or so. The first time I was prescribed them I struggled to find a chemist that could get this high dose for me – Sainsburys by M4 J12 have since proved reliable. And they taste totally disgusting so a few packets of strong mints would be a good idea!
Cannabis oil without the elements that cause a ‘high’. Approved by NICE but not yet available to those with MS as clinical trials are needed to prove it is both effective and value for money etc. I have tried it but not currently using it. I purchased it privately and used CBD Brothers Blue oil. Do your research as it pricey, and tastes revolting!
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