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- Nov 5, 2009
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Cipro and Celebrex, the brand names for the compounds in PrimeC, both have cousins that were withdrawn from the market (Tequin and Vioxx, respectively) and black box warnings for events such as tendon rupture and heart attacks, respectively. Neither is considered first line therapy any longer in their indications. Both are in unmarketed (proprietary) dosages for the PrimeC product in trial.
In addition to trial exclusions for a boatload of heart, kidney, and GI conditions, there is also a seizure potential warning against combining the two.
The phase 2 ibudilast trial results were negative. By torturing some secondary endpoints, and building a mechanistic argument, armed with a riluzole combo patent, funding is flowing for late-stage trials, but results are far from assured. 86% of PALS had at least one suspect adverse event, 37% had to reduce the dose, and a third discontinued early due to adverse events. There is also a case report with various combos, describing blood pressure and vision changes.
As with most therapies, there may be a sweet spot PALS for whom it works great. If you do a DIY trial to find out if you're one of them and it turns out you're not, please be prepared to act on that result. Some of us are old enough to remember when gabapentin, minocycline, lithium, and creatine were the hottest things going in ALS. None was worth the risks, and some PALS did get worse instead.
If you want to try more interventions, I would direct you to the trials on tap and the long list of things that do have proven benefit, and that are often underutilized.
These include BiPAP, feeding tubes, real food blending, positioning (hospital beds with reverse Trendelenburg positioning, lift chairs, foam blocks/boots, temperature-controlled bedding, latex pillows/overlays) and mobility devices (wheelchairs, patient lifts) along with judicious use of meds, suction, oscillation, assisted cough, etc. And Internet/mobile technology/assistive devices for communication, content creation/consumption, and social interaction.
We know these affect quantity and quality of life. We don't have that level of evidence for the pipeline meds. It's always your choice to DIY, but it's also exclusively your risk.
In addition to trial exclusions for a boatload of heart, kidney, and GI conditions, there is also a seizure potential warning against combining the two.
The phase 2 ibudilast trial results were negative. By torturing some secondary endpoints, and building a mechanistic argument, armed with a riluzole combo patent, funding is flowing for late-stage trials, but results are far from assured. 86% of PALS had at least one suspect adverse event, 37% had to reduce the dose, and a third discontinued early due to adverse events. There is also a case report with various combos, describing blood pressure and vision changes.
As with most therapies, there may be a sweet spot PALS for whom it works great. If you do a DIY trial to find out if you're one of them and it turns out you're not, please be prepared to act on that result. Some of us are old enough to remember when gabapentin, minocycline, lithium, and creatine were the hottest things going in ALS. None was worth the risks, and some PALS did get worse instead.
If you want to try more interventions, I would direct you to the trials on tap and the long list of things that do have proven benefit, and that are often underutilized.
These include BiPAP, feeding tubes, real food blending, positioning (hospital beds with reverse Trendelenburg positioning, lift chairs, foam blocks/boots, temperature-controlled bedding, latex pillows/overlays) and mobility devices (wheelchairs, patient lifts) along with judicious use of meds, suction, oscillation, assisted cough, etc. And Internet/mobile technology/assistive devices for communication, content creation/consumption, and social interaction.
We know these affect quantity and quality of life. We don't have that level of evidence for the pipeline meds. It's always your choice to DIY, but it's also exclusively your risk.
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. I guess it may not be as good news as I thought.
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