Dantrium

[Scott1]

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,

[NHE]

Hi Scott1,
I’m sorry to read this. Your problems seem to have arisen after switching to the new prescription. What company is the manufacturer of the new meds? Is it from India? There have been a large number of fraudulent pharmaceuticals coming out of some Indian companies like Ranbaxy and Wockhardt.

https://www.peoplespharmacy.com/article ... hould-care

https://www.peoplespharmacy.com/article ... y-medicine

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.

So much for FDA ‘Black Box’ warnings.

https://www.accessdata.fda.gov/drugsatf ... 049lbl.pdf

Have you had a liver enzyme test done?

[Zyklon]

Good to hear that you are better now.

[Scott1]

Hi NHE,

I believed I was on a version of Dantrium made by Pfizer. The problem is I don't know how or when they acquired the formulation. They certainly did not invent it. In December, I was switched to a product made by a Netherlands headquartered company called Norgine. The box has a sticker label on it which points to Pfizer Australia for enquiries. The box has printed on it that Dantrium is a registered trademark of the SpePharm AG group of companies and is licensed to the Norgine group of companies. I cannot tell who actually made it. The pharmacist did say, when it was switched, that it was a different formulation but who knows what that means.
I'm aware that a liver enzyme test should have been done. When Dantrium was first offered to me there was no suggestion to do such a test. When I realised this, I had presumed I was ok as I had been using it for years by then without problems. All my issues started when the old product disappeared and I was offered the Norgine product.
Unfortunately, the prescribing professor isn't really interested and my local doctor is just a drone who repeats prescriptions without any reviews (welcome to modern medicine).
I'm still having 'hypo' events but can control them with apple juice. Hopefully, staying away from Dantrium will allow my liver to resume normal functioning.
It would be fair to describe me as rather cross.

Regards,

[NHE]

Hi Scott1,
I recommend getting some blood work done now so that you have documented your current status in case you should need it at some point in the future. From what you describe, it sounds like your liver has been damaged and is no longer breaking down glycogen to maintain your blood glucose level.

Unfortunately, the prescribing professor isn't really interested...

How could they not be? Indifference is negligence which is malpractice.

Complications

Untreated hypoglycemia can lead to:

• Seizure
• Coma
• Death

I would also save the suspect Dantrium. It may be possible to get it analyzed for possible contaminants and correct dosage. Find a doctor who will take this issue seriously. At a minimum, blood tests are certainly in order.

A glucose monitor might also be a good idea. Here in the states they can be purchased inexpensively from Amazon.

[NHE]

Hi Scott1,
Here is the prescribing information for the Norgine Dantrium.

https://www.medicines.org.uk/emc/produc ... smpc/print

[Scott1]

Thanks NHE,
There are plenty of references in that note about being wary with sugars. As a child, I was extremely dairy intolerant and dairy products had to be excluded. That was about the sugars, not the protein. I still have to be careful with fructose as well as it can leave me feeling bloated and uncomfortable.
Although, I'd normally dash off and get a base line reading, I will have to wait. As I was initially wary of an MS event (this isn't), I'm taking a precautionary short course of prednisone, which will elevate my blood sugars, and I'm needing a bit of sugar in the morning to sort my vision out. That will invalidate any useful study in the morning. Having discussed my symptoms with a friend, who is a diabetic, I am having classic 'hypo' symptoms. Once I'm off everything completely, I'll get a test.
The bottom line is we need to read the manufacturers notes for medications because most medical practitioners ignore them.
Hopefully, this sorts itself out soon.

Regards,

[NHE]

Hi Scott1,
Here's the Australian Pfizer prescribing information for their Dantrium.

https://www.medicines.org.au/files/pfpdantc.pdf

[Scott1]

Hi,

Well, now I have the answer to what was going on.
When my Dantrium dose was increased by 25mg (total became 75mg) I started to become constipated. This is, most likely, because the higher dose wasn't warranted and the matter that should have passed through me just sat there. The consequence of this was an opportunistic infection could set up and I developed a urinary tract infection. Everything that transpired from the time of the constipation was all part of the development of the infection.
It is not uncommon for MS symptoms to flare up during infections. I didn't feel like I was having a true MS attack but certainly my eyes and limbs were affected.
As to why a bit of sugar straightened up my vision - I don't know. Bacterial infections love sugar but I really don't know why adding sugar made me feel better.
Nonetheless, yesterday, no matter what I did, I seemed to be getting worse. I took myself to the ER at the hospital and six hours later I had the answer. Prior to this, despite describing my symptoms, the dark colour of my urine and every step from constipation onwards no one stopped to check for infection. The spasticity people and my local doctor were talking the hypoglycaemic line. Infection was never considered. Thank goodness for clever people in ER.
Antibiotics should fix this. The change of drug supplier is just coincidental. The change of dose was the problem.
Regards,

[NHE]

Hi Scott1,
It’s good to hear that you found a direction forward. Most often, it’s best to check the basics. Sometimes it’s easy for doctors, and others, to become biased by preconceived assumptions.

It is not uncommon for MS symptoms to flare up during infections.

I also become weak when I’m not feeling well. For example, one UTI I had made me so weak I didn’t even have the strength to eat until I brought the fever down with some Tylenol. However, another UTI produced no symptoms except for cloudy deposits in my urine.

At the suggestion of the professor in charge, I increased my morning Dantrium dose from 25mg to 50 mg.

I’m curious why this was done?

[Scott1]

Hi NHE,
As I mentioned earlier, the clinic wanted to inject a muscle that I did not want them to touch. Instead I wanted them to inject part of my calf. We agreed to disagree and review in 5 weeks. To compensate for the stiffness in my leg, the suggestion was to increase the Dantrium dose and see how that went.
The problem is Dantrium has a systemic effect where my tight muscle was a local event. Using a higher Dantrium dose slowed the motility in my gut, and I became constipated. That created the opportunity for a UTI to become established. That took a few weeks to become a problem.
The antibiotic is finally starting to work, so hopefully its all improvement from here.
Regards,

[Jaded]

I have just seen this thread.

Sorry to hear of your problems Scott1, are you feeling better now?

[Scott1]

Hi,
Yes, thank you. All good now.
The interesting thing was after using Dantrium for 6 plus years (and finding it very useful) I discovered that I probably didn't need it any more. Usually, if you start on Dantrium or Baclofen it's something you continue to take for a very long time.
Until I understood it was an infection giving me problems I blamed the change of brand of Dantrium for making me unwell and stopped using it. That exposed the effect of it's ability to create systemic weakness. Using Pilates I overcame that and built up my muscle strength.
Fortunately, many of the lesions I had have resolved and the effect created by Dantrium was no longer required. So now I am just back to my usual protocol of acyclovir and a few supplements. Works for me!
I hope you have been keeping well.
Regards,

[Jaded]

Ah that's good to hear!

Not doing so well here - tripped up in early Feb and ended up with a wrist sprain which has reactivated the neuralgia. It's been pretty painful. Tried all my usual tricks, no luck so have been taking amitriptyline hoping it'll numb the pain. I am also having physio which helps the shoulder and neck pain from the fall. That really helps the neuralgia for a couple of days....been a very expensive time!

Keep well,

J

[Scott1]

Sorry to hear that.

Is the shoulder and neck tight or just painful?

Regards,