Hi Julie:
This post is long, but necessary.
First, I’d like to apologize for the poster who may have unnecessarily frightened you by jumping to unfounded conclusions and making implications and statements that are egregiously misleading or completely false, the very least of which is the inability to spell voilŕ.
It isn’t uncommon for the interferons to cause an elevation in liver enzymes. Elevations aren’t necessarily serious, but are instead indicators of an irregularity. Sometimes the increase doesn’t resolve and the person is taken off the medication to prevent further, potentially serious, problems. That can happen even when the enzymes aren’t seriously elevated. That fits right in with your statement that your husband’s liver enzymes were “off.” You didn’t say anything directly or indirectly about your husband’s liver being significantly compromised or “bad.”
It was already, then, an unsupported overstatement that your husband’s liver is “bad.” In litigation, that’s referred to as “assuming facts not in evidence” and is cause for objection. Even if true, there’s no evidence of that in your post, so anything said after that is without merit. To then imply that, because your husband has a “bad” liver, the 5-day steroid treatment was inappropriate is a pure fabrication on the part of the poster. With the evidence presented that your husband’s MS is progressing rapidly, steroids (unless otherwise contraindicated – and there’s no evidence of that) were completely appropriate. There isn’t an equivalent way of stopping inflammation quickly, and is a standard procedure. There’s no indication here that your husband or his doctor made an inappropriate treatment choice. Please put that out of your mind immediately.
The blanket statement that the interferons have been shown to make people much worse flies in the face of 15 years of medical evidence to the contrary. It might be true for some people with MS (with or without neutralizing antibodies, and is true for some other conditions besides MS), but there’s no evidence at this time that it’s true for your husband. And with MS that’s progressing rapidly anyway, there might not be any way to ever know if that’s the case. So the statement that “they finally figured out that the interferons meds make you MUCH WORSE..than better. PERIOD” is BLATANTLY false. PERIOD. The fact that the poster doesn’t understand neutralizing antibodies only underscores her own lack of credibility.
Also, at this point, discussion of whether your husband was actually harmed by Betaseron would be unproductive. Water under the bridge. The future is what matters now.
Even more egregious is the implication that your husband might be or is really suffering mostly from liver damage caused by medication. There’s no way to know that from the evidence presented. The evidence implies otherwise. So PLEASE don’t be frightened or mislead by such an unfounded fabrication.
Well, enough of that!
What does bear repeating – from educated and credible posters – is that the use of any immunosuppressant medication before Tysabri appears to put a person at greater risk for developing PML. So far it looks like it’s workable to take Tysabri before other meds, but not advisable to take some other meds before Tysabri.
I’m going to quote from MrsBones, who has always been a well-informed and thoughtful poster:
“Something to consider when choosing between Novantrone and Ty is that while the PML risk is small, it appears to be greater in those that have previously used immunosuppressants or used immunomodulators/suppressants while using Tysabri. My doctor suggested that I should reserve Novantrone for the last ditch effort as taking it first may make me an unsuitable candidate for use of Tysabri, Cladribine or other new drugs expected in the next few years, thus removing one of the better current options for treatment from my list of options. When you're young and dealing with this, it's best to keep that list as long as possible for as long as possible.” [Emphasis mine.]
The article that poster Marco cited is very good. It is hard to compare Tysabri and Novantrone in some ways because the studies didn’t look at the same factors and outcomes. But based only on the undesirability of putting other drugs before Tysabri and leaving other options open for later, Tysabri comes out ahead of Novantrone. That way, Novantrone can be held in reserve as an option for later. The choice may be different if you use other criteria. Personally, I think the order of trying the drugs is one of the major points to discuss with your husband and his neurologist.
Again, I'm sorry you got some bad advice and perhaps some unnecessary scares to go with it, but there are many other people here who are well informed and credible, and you also heard from them. My best to you and your husband.
This post is long, but necessary.
First, I’d like to apologize for the poster who may have unnecessarily frightened you by jumping to unfounded conclusions and making implications and statements that are egregiously misleading or completely false, the very least of which is the inability to spell voilŕ.
It isn’t uncommon for the interferons to cause an elevation in liver enzymes. Elevations aren’t necessarily serious, but are instead indicators of an irregularity. Sometimes the increase doesn’t resolve and the person is taken off the medication to prevent further, potentially serious, problems. That can happen even when the enzymes aren’t seriously elevated. That fits right in with your statement that your husband’s liver enzymes were “off.” You didn’t say anything directly or indirectly about your husband’s liver being significantly compromised or “bad.”
It was already, then, an unsupported overstatement that your husband’s liver is “bad.” In litigation, that’s referred to as “assuming facts not in evidence” and is cause for objection. Even if true, there’s no evidence of that in your post, so anything said after that is without merit. To then imply that, because your husband has a “bad” liver, the 5-day steroid treatment was inappropriate is a pure fabrication on the part of the poster. With the evidence presented that your husband’s MS is progressing rapidly, steroids (unless otherwise contraindicated – and there’s no evidence of that) were completely appropriate. There isn’t an equivalent way of stopping inflammation quickly, and is a standard procedure. There’s no indication here that your husband or his doctor made an inappropriate treatment choice. Please put that out of your mind immediately.
The blanket statement that the interferons have been shown to make people much worse flies in the face of 15 years of medical evidence to the contrary. It might be true for some people with MS (with or without neutralizing antibodies, and is true for some other conditions besides MS), but there’s no evidence at this time that it’s true for your husband. And with MS that’s progressing rapidly anyway, there might not be any way to ever know if that’s the case. So the statement that “they finally figured out that the interferons meds make you MUCH WORSE..than better. PERIOD” is BLATANTLY false. PERIOD. The fact that the poster doesn’t understand neutralizing antibodies only underscores her own lack of credibility.
Also, at this point, discussion of whether your husband was actually harmed by Betaseron would be unproductive. Water under the bridge. The future is what matters now.
Even more egregious is the implication that your husband might be or is really suffering mostly from liver damage caused by medication. There’s no way to know that from the evidence presented. The evidence implies otherwise. So PLEASE don’t be frightened or mislead by such an unfounded fabrication.
Well, enough of that!
What does bear repeating – from educated and credible posters – is that the use of any immunosuppressant medication before Tysabri appears to put a person at greater risk for developing PML. So far it looks like it’s workable to take Tysabri before other meds, but not advisable to take some other meds before Tysabri.
I’m going to quote from MrsBones, who has always been a well-informed and thoughtful poster:
“Something to consider when choosing between Novantrone and Ty is that while the PML risk is small, it appears to be greater in those that have previously used immunosuppressants or used immunomodulators/suppressants while using Tysabri. My doctor suggested that I should reserve Novantrone for the last ditch effort as taking it first may make me an unsuitable candidate for use of Tysabri, Cladribine or other new drugs expected in the next few years, thus removing one of the better current options for treatment from my list of options. When you're young and dealing with this, it's best to keep that list as long as possible for as long as possible.” [Emphasis mine.]
The article that poster Marco cited is very good. It is hard to compare Tysabri and Novantrone in some ways because the studies didn’t look at the same factors and outcomes. But based only on the undesirability of putting other drugs before Tysabri and leaving other options open for later, Tysabri comes out ahead of Novantrone. That way, Novantrone can be held in reserve as an option for later. The choice may be different if you use other criteria. Personally, I think the order of trying the drugs is one of the major points to discuss with your husband and his neurologist.
Again, I'm sorry you got some bad advice and perhaps some unnecessary scares to go with it, but there are many other people here who are well informed and credible, and you also heard from them. My best to you and your husband.
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