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First appointment with MS specialist

So today I had my first appointment with my MS specialist. What a nice man he was and I was took my husband along too . It was not a shock for me to have confirmation of MS as the neurologist I had seen whilst I was in hospital had practically spelled it out to me that it was unlikely to be anything else. The only surprise for me was his diagnosis of RRMS as I had convinced myself it was going to be PPMS.

i am being allocated an MS nurse which is good and referred to the Neuro physio. I’ve also been given a choice of DMTs to research and make a decision on. Now I’m the sort of person who hates to take even a paracetamol unless I’m desperate but hubby is the complete opposite and takes one just in case he gets a headache! So as you can imagine he has heard the statistics and thinks that the 30-40% reduction in relapses over 2 years is a no brainer. He not interested in the side effects so I’m wondering if you lovely people can tell me your experiences. The DMTs I’ve been offered are Copaxoul, Beta-interferon , Aubagio and Tecfidera

Hello

Well the good thing about having an RRMS diagnosis as opposed to PPMS, is that there are disease modifying drugs (DMDs) available to you. These are designed to reduce the number and severity of relapses by a given percentage.

I am a firm believer in DMDs. If you read the post on the Everyday Living forum here: https://community.mssociety.org.uk/forums/everyday-living/dmd-side-effects-anyone-not-take-them you can read my experiences and the reason why I believe in these drugs.

Also, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid The decision aid lists all the various DMDs available. It includes their various efficacy as well as potential side effects.

This is my thoughts on what you’ve been offered:

Copaxone is really easily tolerated by most people. In my experience, it had very few side effects. It is an injectable, but it’s a tiny little needle that goes in subcutaneously (just under the skin). The only thing you have to watch out for in rotating your injection sites. When I used it, I was pretty skinny so tended to inject my fattest bits, generally my bum and thighs, occasionally my stomach, but avoiding my skinny upper arms.

I’ve not tried Betaferon, but generally people manage that pretty well, again a subcutaneous injection with about a 30% relapse reduction rate. The commonest side effect is flu type symptoms after the injection. You can avoid the worst of this by taking paracetamol.

Betaferon and Copaxone are both old drugs. This is both a good and a bad thing. The side effects are well known, they are fairly well tolerated, and most importantly, if you don’t get on with them, they ‘wash out’ of your system very quickly and easily. The minuses for both are that they are injectables and their efficacy is only about a 30% average reduction of relapses. But as this is an average, you will find some people on both drugs for years with no, or very mild, relapses.

Aubagio I’ve not taken, and nor would I. It is an oral therapy, but to my mind, that’s all that’s good about it. It still only has a 30% relapse reduction rate, but the down side (IMO) is the list of side effects is quite long, some of them quite serious. Have a look at the information on the decision aid for the list of possible side effects.

Tecfidera on the other hand, has the best relapse reduction rate of the drugs you’ve been offered, at an average of 50%. It too is an oral therapy. It does have potential side effects, the most common of which is nausea and stomach upsets at the beginning. You can reduce this by starting slower than is generally prescribed. Usually people start at a half dose for one week then go to the full dose in week two (I must admit, I did this with no problem, but others do have trouble). It is possible to start by taking one half dose per day (instead of two half doses) in the first week, two half doses in week two, one full and one half dose in week three and the full 2 doses in week four. There is the possibility of developing reduced lymphocytes on Tecfidera (fairly common), which might mean you have to stop the drug. But it’s probably worth the risk (blood is taken to check this - if it’s going to happen, it will be after about 6 months that your lymphocytes will settle down). Lymphocytes are the kind of white blood cells that fight against viruses, which is why if your lymphocyte count goes down very low and stay there that you have to stop the drug. There is some research that shows Tecfidera has the best results if it’s the first DMD you take.

So, out of these drugs, I have taken Copaxone and Tecfidera. If you’re not needle phobic, then Copaxone is possibly the easiest drug to take because of the lack of side effects. But it only has a 30% relapse reduction rate. If you want a more effective drug or prefer not to inject yourself, then Tecfidera is a better option.

These are all my opinions. Do some research yourself, talk to your MS nurse when you see her/him about the drugs. And make the decision together with your husband. If you start a DMD and decide that you hate the side effects, or the method of taking it, or you continue to have relapses, you can swap to another drug. There are plenty more available. So the decision really isn’t life or death, it’s usually easy to swap to another drug.

Best of luck.

Sue

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Thank you so much Sue, your knowledge is incredibly useful. I wish I didn’t worry so much about the side effects but they scare me, but then I’m also scared not knowing what the future holds. I do think though that I owe it to myself and those closest to me to at least try and I would hate to regret not doing so later down the line.

i feel like such a baby when there are those brave enough to have the stronger therapies and stem cell treatments.

From what you have said together with the information in the decision portal I’m leaning towards Copaxone.

.

Great info from Sue and in my opinion it looks like you are being smart by trying DMDs.You can always change or stop if they are not for you.

All the best

Mick

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