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experience with treatments? what to opt for?

Hi all, I’m new here, was just diagnosed with very active RRMS yesterday, handed a book full of information amungst which was about 9 options of treatments! I am overwhelmed and haven’t a clue which option to take, so I thought that I would ask here for your experiences with treatment options, what worked for you? what reactions did you have? side effects? what was your best option?

IIve been adviced to probably avoid injections and to opt for tablets or infusions instead as my MS is so active. Have you had any of these treatments? tell me your experience please!

Hello

That sounds like a pretty unhelpful way to be given a diagnosis of MS.

Were you given any pointers by the neurologist as to which drugs he thought you should be considering? Apart from ignore the injectables? And the contact details of an MS nurse so you can run through the options with someone knowledgeable?

The incredible thoughtlessness of doctors makes me want to shout and swear at them.

Of course you are overwhelmed. It may be that you were expecting the diagnosis, but even so, it still hits you like a hammer to the forehead. I would anticipate your emotions to be a bit all over the place over the next days/weeks/months (maybe longer). Don’t feel constrained to ‘see the positives’, or ‘accept’ it. MS is crap. And the best you can do (imo) is to fight it with a big stick (ie a strong disease modifying drug).

In terms of disease modifying drugs (DMDs), these can all have side effects to balance against their benefits. The point of a DMD is to reduce the number and severity of relapses. And the DMDs vary widely in their efficacy. But to balance their effectiveness comes potential side effects.

The first DMDs on the market were the initial 4 injectables, the beta-interferons and Copaxone. These have now been joined by variants of the types of interferon and Copaxone. Essentially though, they come with milder side effects and an average relapse reduction rate of about 30%. Added to this group is Aubagio, a once a day pill. In my opinion, I should give Aubagio a body swerve, it’s still got a relapse reduction rate of about 30%, but comes with a long list of possible side effects. These drugs are all category 1.1, or Mildly Effective. And they are what you’ve been told to ignore as options.

The next group is category 1.2, or More Effective: Gilenya, Cladribine and Tecfidera. They are all tablets, all have a relapse reduction rate of about 50%. They all have the possibility of side effects, some more serious than others, but the side effects seem to be all resolvable once the drug is stopped. Gilenya and Tecfidera are daily pills, while Cladribine (aka Mavenclad) is taken over 2 years for 2 periods of time each year. I would expect that Cladribine and Tecfidera are the best options from this group.

The last, category 2 is Very Effective: Lemtrada, Ocrevus and Tysabri. These are all infusions, and all have an average relapse reduction rate of about 70%, but significantly worse potential side effects. Lemtrada is taken 2 years running but has some risks attached including developing Autoimmune Thyroid Disease. Tysabri is a once a month infusion and also has risks, in particular a rare brain virus called Progressive Multifocal Leukoencephalopthy (PML), But you can only develop this is you have the antibodies for a virus called John Cunningham Virus (or are JCV positive). The risk of this is quite well managed with regular blood tests, but it is a real consideration. The newest of this category is Ocrevus, it’s taken every 6 months by IV infusion but significantly has much less serious potential side effects. This would probably be the safest and best option out of this group.

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid This decision aid goes into a lot more detail about the various drugs, their benefits, means of taking them and possible side effects.

If you have been given the contact details of an MS nurse, I’d talk it through with him/her as well as with your family and/or friends as any decision you make is likely to also affect your close family. If you’ve not been given access to an MS nurse, try phoning your neurologists secretary and ask how you get in touch with a nurse. Talking all the options through with someone who understands what they’re all about is fairly essential.

I used to think it was a pretty bad show in the bad old days when I was given four videos of the four injectables that were then available (films made by the drug companies!) and told ‘watch these and pick one’. Times have improved in terms of the number of drugs available, but not in interpersonal terms, if you’ve been just told: ‘here they are, avoid those, but pick one of the others’!

I wish you the best of luck with your choice of drugs. If you chose a lower risk category 1.2 drug, you would of course still have the potential to move to one of the more effective category 2 drugs. But many people, faced with ‘very active MS’ head straight for the most effective drug they can get hold of to hopefully avoid potential disability in the future.

For my part, I’ve been unlucky with DMDs. I had side effects with 3 out of 4 drugs that I’ve tried and Copaxone stopped working. I’ve had MS now for 22 years, have just started relapsing again after a few years when relapses stopped and am going to give Copaxone another whirl, simply because that’s my only option. Because I’ve spent nearly all my years DMD free, I’m quite badly disabled. This is the reason I would definitely start a decent DMD as soon as you can (very few people have such a bad experience with as many drugs as I have).

Sue

Thanks for sharing your experience. It will help lots of people.

@Ssssue Thank you so much for such a detailed and well thought through response, that has really helped me! I had a gut feeling to go for the octrevus and what you have described has made me 90% sure thats the right choice for me. I’ll check out that site you have provided before I make my final choice.

I have contact details of an ms nurse, so I will contact her also.

With regards to my emotions following diagnosis… I’m pretty numb. It didn’t really come as a shock but it wasn’t really expected either. Its like ive been told I have a chest infection… bit of meds and ill be fine. I know thats not the case but thats how i feel. Maybe it will hit me later. Right now I’m being kept busy with my 2 kids!

I hope you have an easier ride on the new drugs you are trying, and the relapses arent too severe. And again, thank you for taking the time to reply so well!