Oh, I know. I did look at all the potential side effects for every DMD, as well as the % reduction in relapses and new lesions for all of the studies done on them. I already know the Interferons are not something I can ever go on, so it was an exclusion game from there.ElliotB wrote: ↑Sat May 11, 2019 9:13 amCurrent DMDs typically do not prevent long term progression and are not advertised to do so.
I have been taking Copaxone for almost 6 years and when presented info about it originally by my neurologist, one of the first things I noticed was that progression of MS was clearly shown not to be altered by taking Copaxone. Although unofficially they consider it a possibility.
And while the thought of taking a capsule instead of an injection may seem like a good/convenient choice, PML concerns (a rare brain infection that usually leads to
death as there is no cure) as well as reduced white blood cell count and liver issues with an easy to take drug like Tecfidera warrant serious thought about it - there are safer options. These are very,very serious side effects/issues! All the DMDs have side some side effects, but some are too serious/deadly to make them a choice to consider and other drugs have been shown to be well tolerated with minimal or certainly less serious side effects that are often not life threatening.
I actually have a really severe phobia of throwing up left over from stuff that happened in my childhood, so deciding to try to Tecfidera was not an easy choice for me. The reality is though, if I don't go on medication just because I'm scared (or because, in the case of Copaxone, it isn't actually effective for 8-9 months, and then is only a little over half as effective at reducing progression or relapses than Tecfidera) of side effects, it's only going to end up hurting me since the chance that this is actually MS is very high at this point.
I've read all the research and merits of starting on heavier DMDs even with just an initial episode, and I've also read more recent studies showing that more aggressive oral/IV DMDs are way more effective (with IV ones coming out on top, but obviously the side effects are much worse and PML is more likely with the "best" one) on younger patients. Tecfidera is the starting point for me, if I can get an exception to get on it and if I can handle the side effects (I'm fully prepared to be throwing up at work when I take it, I'm generally not lucky with medication that causes nausea, but if that's what it takes, that's what it takes).
Tecfidera has a lower chance at causing PML than other aggressive DMDs, and obviously does affect your immune system like all but Copaxone, as well as having the chance of liver trouble, but the risks also come with the tradeoff that it's much more effective than any of the shots. I would rather test severe side effects (it's sort of the midway point between really serious and low-impact in terms of side effects) to start with and see if they're tolerable than to settle for the one drug that has almost no side effects, but also won't help as much. I think it's a reasonable first medication considering that it's not one of the ones with a high-ish chance of causing things like cancer and such, and not like Tysaris which has a noticeable chance of causing PML and much worse other side effects.
All of this could very well be a moot point if my insurance denies me, and I'll have to try Copaxone, but an aggressive DMD will be my next step when/if new lesions appear. I have been on medication before that had a high chance of affecting my liver, and never had trouble. I used to drink like once every few months socially, but I'm cutting that out completely regardless of what I go on, as well as adding things into my diet that I've just never bothered with but are really good for long term health.
My main worry at this point, aside from just medications, is the fact that I'm still having significant symptoms. Not enough to affect my day to day life MUCH, but my grip in my right hand is noticeably weak, and the neurologist confirmed that, along with the residual numbness in half that hand. I have an intention tremor in my right leg that has persisted through both rounds of steroids (dexmethasone and SoluMedrol), and I'm still getting severe back pain at random (which is why he's doing a lumbar MRI next), as well as blurry vision. The eye doctor my neuro sent me to on Monday said he thought it was just a side effect from the SoluMedrol, but most of the blurriness has persisted, so my neuro thinks it might actually be a mild case of optic neuritis. I'm on another 5 day stretch of Dexmethasone to see if it clears up the lingering symptoms, particularly the blurry vision, which is making it hard to focus on words or see things straight.
My symptoms have improved enough that my neuro cleared me to go back to work on Tuesday, with only one accommodation, but my boss is really lax and has been really supportive through this, so we'll work things I can't handle out as we go. The accommodation I asked for was just so other departments wouldn't throw a fit because they may not be as understanding, and I'm not giving everyone details on what's going on with me - I've been through the whole gossip bull back in high school when I was diagnosed with Fibromyalgia, but the stigma associated with MS is much worse. Most of the information is being kept in our department, with some executives being in the know as well. I'm really excited to head back to work, whether or not the third round of steroids does the trick. The neurologist warned me that it may take days, weeks, months, or the symptoms I still have may never go away.