I got letter from Neuro to say MS was confirmed and received a load of books on different drugs and that I need to start on something and he will see me in clinic.
It didnt say whether i would be written to with an appointment or whether I needed to make this appointment myself? Should I call or wait for appointment? what is the “norm”?
The books I have received are:
Copaxone
Aubagio
Tecfidera
Plegridy
Zinbryta
Am I supposed to chose one of these? if so can anyone give experience of any of them?
Feel rather confused as didn’t expect to get bomshell through the post like that
Well from experience I’ve learned you must take responsibility for your own health. Phone and ask for the Nuero’s secretary, ask if you can make a follow up appointment, being newly diagnosed. You’ll soon be informed if one will be in the post to you or if you have some kind of input as to what time/date.
Initially diagnosed rrms, I chose Plegridy. Like you I was offered a range of glossy brochures printed by the Pharmacuticle companies. Each one claims to be wonderful and shouting, “pick me!”. That seems to be the norm. No Neuro will choose for you. These drugs are all relatively new (20 years ago there was nothing for ms) and so recommendations won’t be made, although opinions may be.
The Plegridy nurse came to my home and instructions given for correct usage. Easy and simple. I only chose it as it seemed simple. One injection once a fortnight. I didn’t do any further research. I found the side effects too much. Very low moods and depression kicked in the evening of injection and stayed for 48 hours. As in didn’t want to get out of bed or get dressed. Eventually when I did around lunchtime, I would find the tears rolling for absolutely no reason. 4 hours later, back to normal wondering what that was all about and feeling very foolish. This occurred without fail after every dose! After six months I pleaded to change.
I made a far more informed choice and chose Tecfidera. The statistics for slowing progression and reducing/stopping relapses are far higher. Brilliant. Two tablets twice a day. A bit of flushing and cramping, if I hadn’t followed instructions and taken on a full stomach. Easily sorted.
However a year later my diagnosis was changed to ppms, for which there are no drugs, as yet. Hope you hang around here. Keep reading on here. Loads of info too, if you type a query/word into the small search bo above posting. It brings up lots of threads with relevant info.
The Plegridy sounds awful, not sure whether already being on anti depressants that would make it worse.
I havent read the brochures as I can imagine they are more like a sales pack, I have instead looked online at each one and thought jeez what are all these side effects about they sound really quite scary!
I suppose I may actually be limited on my choice due to already being on anti depressants and taking other medication which I need regular liver checks due to the side effects for that, that said i am terrible at remembering to take tablets and needles well Im also not a great fan of those, but it looks like i am gong to have to get better at taking tablets, or stop being such a wimp!
I did read though that Zinbryta wouldn’t be allowed unless Lemtrada had been tried first or wasn’t suitable, however Lemtrada wasn’t a book that was included.
That was only MY experience with Plegridy. Others don’t have a problem. However, it’s a poor offering I think in terms of statistics in comparison to other drugs out there. Tec comes in a blister pack with days printed on each one. There’s even an AM PM symbol on it! I used to keep mine by the kettle. It was easy to see and keep track of. If someone forgot or took double doses, then I don’t think they should be administering their own medication!
Top of this page click on “What is ms?”, then choose Treatments. A very helpful guide for the various drugs available. Very useful. Good luck.
Have a look at MS Decisions aid | MS Trust you are most likely to be offered a choice of the old style injectables, these include Copaxone and Plegridy. Some people do experience depression with Plegridy, most people don’t experience significant side effects from Copaxone in the short term, but in the long term, injection site reactions can be a bit nasty. Both of these drugs have a relapse reduction of 30-35%. Aubagio and Tecfidera are the other drugs you are likely to be eligible for, these are both oral therapies. Aubagio sounds (to me) like the worse option, it has an average 30% reduction rate and can cause side effects. Tecfidera is a better option, it has a relapse reduction rate of on average 50%. It can have side effects, like all the others, but is well tolerated by many people. It is also considered by some eminent doctors, to be most effective when it’s the first DMD a person with MS takes.
With regard to your next appointment, why not give the neurologists secretary a call and ask? You could also ask for the contact details for an MS nurse. S/he would be a good person to discuss all the various drug options with as well as any ongoing symptoms you may have.
