Dantrium
Posted: Wed Feb 15, 2023 9:54 pm
Hi,
If anyone is on, or is thinking of using, Dantrium this might be useful.
The background - In 2016, after a big attack a year or so earlier, I was offered an antispasticity medication called Dantrium. It is synergistic with Baclofen but works by targeting a receptor in muscle called the Ryanodine receptor (specifically RyR1). Not every type of Ryanodine receptor is affected, else our heart and diaphragm could be negatively affected. It's a difficult medication with many contraindications but can be super helpful in the right circumstances. I took 2x25mg/day with no negative effects for about six years. It was very helpful.
Last December my pharmacist told me the usual supplier could no longer provide stock due to supply problems getting ingredients (presumably China lockdowns). I was given a different brand with identical labelling.
Coincident with this, I had been getting a few Botox injections in my left leg to help with a bit of stiffness. The clinic and I disagreed about where the next injection would be located so we agreed to wait. At the suggestion of the professor in charge, I increased my morning Dantrium dose from 25mg to 50 mg.
Within 10 days of doing this, I became constipated and started to experience reflux so I reduced the dose back to the old level. Three days after that, I began to have trouble with my eyes dancing up and down and couldn't hold a steady gaze. Then my hands started getting pins and needles and the muscles in my arms began aching. At night, I started to experience very painful stomach muscle cramps.
Having been diagnosed with MS for nearly 30 years, I thought these were all atypical MS symptoms for me.
I tried contacting my neurologist but he doesn't work Mondays and Fridays and leaves his pager switched off. Then I contacted my local doctor (MS knowledge close to zero!) and we agreed to try a short course of prednisone.
The next day, whilst having a coffee with a diabetic friend, I mentioned my symptoms and he said "I go like that when I'm having a hypo, try eating something sweet."
Sure enough, that solved the problems. After being a long term user of Dantrium, and being very impressed with it, I am now stopping it.
When I read the manufacturers notes there are a number of protocols to check for liver health that should be followed. No one from a nurse to a doctor to a neuro to the professor who put me on it has ever suggested any test to ensure that it is not harming me. There are some obscure notes about Dantrium being used to treat a very rare diabetic condition called Wolfram syndrome but there is nothing else obvious about Dantrium and blood sugars. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8410026/
Based on that research, it would seem to me that your blood sugars can be affected by Dantrium.
Apart from all the physical symptoms I experienced, my urine became very dark, my body odor was revolting and I began to feel a lot worse. The smallest amount of sugar in water and discontinuing Dantrium has greatly improved every aspect of these problems.
Dantrium does challenge the function of the liver and that organ has a role in regulating insulin.
I have replaced the Dantrium with magnesium and that also targets the RYR1 receptor. Interestingly, since doing that, there has been a shift in which muscles are the tightest. I will watch and learn how that changes my movement.
The real lesson is the level of compliance by medical practitioners with the manufacturers notes on medications is low. I have had to work this out as they don't care, don't enquire, don't follow up and just aren't interested. That is a common thread across the three decades I have been diagnosed.
No matter what the medication you are on, be aware that hypo or hyperglycemic events are not at the front of mind of MS practitioners. Don't be too afraid to demand some glucose tests.
Regards,
If anyone is on, or is thinking of using, Dantrium this might be useful.
The background - In 2016, after a big attack a year or so earlier, I was offered an antispasticity medication called Dantrium. It is synergistic with Baclofen but works by targeting a receptor in muscle called the Ryanodine receptor (specifically RyR1). Not every type of Ryanodine receptor is affected, else our heart and diaphragm could be negatively affected. It's a difficult medication with many contraindications but can be super helpful in the right circumstances. I took 2x25mg/day with no negative effects for about six years. It was very helpful.
Last December my pharmacist told me the usual supplier could no longer provide stock due to supply problems getting ingredients (presumably China lockdowns). I was given a different brand with identical labelling.
Coincident with this, I had been getting a few Botox injections in my left leg to help with a bit of stiffness. The clinic and I disagreed about where the next injection would be located so we agreed to wait. At the suggestion of the professor in charge, I increased my morning Dantrium dose from 25mg to 50 mg.
Within 10 days of doing this, I became constipated and started to experience reflux so I reduced the dose back to the old level. Three days after that, I began to have trouble with my eyes dancing up and down and couldn't hold a steady gaze. Then my hands started getting pins and needles and the muscles in my arms began aching. At night, I started to experience very painful stomach muscle cramps.
Having been diagnosed with MS for nearly 30 years, I thought these were all atypical MS symptoms for me.
I tried contacting my neurologist but he doesn't work Mondays and Fridays and leaves his pager switched off. Then I contacted my local doctor (MS knowledge close to zero!) and we agreed to try a short course of prednisone.
The next day, whilst having a coffee with a diabetic friend, I mentioned my symptoms and he said "I go like that when I'm having a hypo, try eating something sweet."
Sure enough, that solved the problems. After being a long term user of Dantrium, and being very impressed with it, I am now stopping it.
When I read the manufacturers notes there are a number of protocols to check for liver health that should be followed. No one from a nurse to a doctor to a neuro to the professor who put me on it has ever suggested any test to ensure that it is not harming me. There are some obscure notes about Dantrium being used to treat a very rare diabetic condition called Wolfram syndrome but there is nothing else obvious about Dantrium and blood sugars. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8410026/
Based on that research, it would seem to me that your blood sugars can be affected by Dantrium.
Apart from all the physical symptoms I experienced, my urine became very dark, my body odor was revolting and I began to feel a lot worse. The smallest amount of sugar in water and discontinuing Dantrium has greatly improved every aspect of these problems.
Dantrium does challenge the function of the liver and that organ has a role in regulating insulin.
I have replaced the Dantrium with magnesium and that also targets the RYR1 receptor. Interestingly, since doing that, there has been a shift in which muscles are the tightest. I will watch and learn how that changes my movement.
The real lesson is the level of compliance by medical practitioners with the manufacturers notes on medications is low. I have had to work this out as they don't care, don't enquire, don't follow up and just aren't interested. That is a common thread across the three decades I have been diagnosed.
No matter what the medication you are on, be aware that hypo or hyperglycemic events are not at the front of mind of MS practitioners. Don't be too afraid to demand some glucose tests.
Regards,