Category Archives: Medicines and Supplements

Mitochondrial Disease Treatment in Phase 3 Trial

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Elamipretide

No telling how many years away from availability this is, but it seems a mitochondrial disease treatment called Elamipretide may eventually be a treatment for Mitochondrial Myopathy. As old as I am now I can’t imagine this would be much help to me. Natural aging on top of inefficient mitochondria have taken their toll on my body. I am old, and I feel old. But it’s exciting to think that the day may come in my lifetime there will be help those younger folks who struggle with this rare disease.

Read all about Elamipretide research and progress on Mitochondrial Disease News.

Phase 3 Trial is a Big Deal

Scientists test possible drug treatments on animals before getting to human trials. Human drug trials generally go through three stages. Phase 1 trials mainly want to be sure the new treatment being tested won’t harm healthy people. They track side effects compared to dosages. People volunteer and are often paid to be test subjects for Phase 1 trials. Phase 2 involves testing actual patients to see if it works or not. And of course they are on the lookout for bad side effects, even if the drug does what it in intended to do. That means any time a treatment protocol makes it through Phase 3, there is reason for optimism. Elamipretide is currently nearing the end of its Phase 3 Clinical trial.

And it seems to be actually helping the mitochondria work better. Its like “glue” that makes better connections during the chemical reaction chain that creates energy in the mitochondria. The heart muscle is illustrated in this drawing, but my problem mitochondria are in my skeletal muscles.

Clinical Trial Process is Expensive

If you read more about the whole clinical trial process, it’s not hard to see why drug research is so very expensive. Yes, we all want medicines to be cheap and easily affordable for everyone. But pharmaceutical companies will never get rich developing treatments for what are called “Rare Diseases”. It is not cost effective to do the R&D for a drug that only a few thousand people will ever need. So they have to charge more for the every day variety of meds, like for diabetes. That’s just being financially realistic. The pharmaceutical company normally applies for Orphan Drug classification for any rare diseaae research they undertake. The government provides tax incentives and a longer time as a copyrighted drug than normal medicines. And that’s meant to stimulate more research for rare disease treatments.

Ethical Drug Pricing

The problem comes when Big Pharma gets just plain greedy. They charge for the more common drugs at extravagantly elevated prices. These prices are far out of proportion to what they need to make their share holders profits. We’ve seen this happen with Insulin.

So those of us who live with one of the rare mitochondrial diseases hope for the day when a clinical trial results in a mitochondrial disease treatment protocol. We also know that such a treatment will not be cheap. And we have to face the fact that other medicines will cost more to offset the research and development costs over years of efforts to achieve that treatment.

I look forward to reading your comments!

Flu Shot? Yes or No?

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Have you had your flu shot yet? Are you planning on getting one? Maybe you avoid them? This is a hard decision to make for some people. Others have very definite opinions about getting vaccinations or not.

Flu Shot + Probiotics

This article on Examine.com* about combining the flu shot with probiotics might help you decide one way or the other, if you are inclined to get one but not sure about it.

MRSA Me

I won’t be getting a flu shot again this year. I’m on high powered antibiotics for a sinus infection once again. That means the flu shot would not work on me. This time it’s MRSA. I’m struggling again with the weakness the antibiotics bring on and the sleeplessness from the steroids I’m taking. I’m using the probiotics now to keep from having candida issues with the antibiotic. So far it’s working well. Fingers crossed it continues to forestall that problem.

I’m using my DIY RubyLux light bulb sauna every day, too. The infrared rays should help my mitochondria work as well as possible. Hopefully the infrared lamps will eliminate some of the toxins these medicines produce in my body. And I’m flushing out my system with lots of filtered water.

But for now I’m not exercising very much. I just don’t feel like it.

I will say I’m not anywhere near as sick with this infection as I was last year when I had one sinus infection after another. The skull base surgery I had on my sinuses this July has improved my overall immune system. And I am sure my improved diet and other strategies I’m using from The Energy Blueprint* have a lot to do with the milder time I’m having this year, too.

I hope you’re getting through this season without the crud that so many people around here are dealing with right here at Christmas time. And if you do plan to get a flu shot, please consider the advice from Examine.com*.

Tizanidine plus Physical Therapy

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My Neuro is trying me on Tizanidine (Zanaflex) for my muscle cramps. He also prescribed physical therapy to help me build up my leg and core muscles again. This med is a short life drug meant to temporarily relieve the spasticity of Multiple Sclerosis patients. So, like every other drug he has tried for me, this is another off label drug. There are no meds that are designed to treat Mitochondrial Myopathy. So he prescribes meds created for other diseases and disorders that involve muscle spasms or seizures.

Tizanidine

I’ve only had a few doses so far, but I can tell it takes about an hour to take effect and works for maybe 5 or 6 hours. Of course he has me on the lowest possible dose right now, with the prescription providing for three times a day if I need it. I’ve used it the last two nights to help me get to sleep. That’s when the cramps are the worst, because my mind is not occupied with anything else to distract me from the pain.

Physical Therapy

Yesterday was my first time to go to PT since I went last year after my cervical fusion surgery. It’s the first time I’ve had therapy for my legs in many years. And I’m the first client with Mitochondrial Myopathy this physical therapist has ever worked with. She found out very quickly just how weak I’ve gotten. I don’t think she was prepared for how easily I fatigue to the point of jerking and twitching. So she plans on alternating working on my core and leg strength to keep me from losing control of my muscles so quickly.

I have been trying to exercise here at the house more and more each day, but I am obviously still very weak. I’m much better than I was after trying to use Clonazepam. But I’m not self disciplined enough to make myself exercise as much as I need to. It’s just too easy to sit, since I don’t notice the cramps as much when I’m busy on the computer. So I am confident that having someone make me work harder than I want to is going to be good for me.

And I can only hope that the Tizanidine helps with the muscle spasms. Time will tell.

Back to Methocarbamol – Not as Weak – Still in Pain

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I’m finally completely off the Clonazepam and back on the Methocarbamol and Neurontin. And I have a Neuro appointment in June. I had hopes that the time off the meds, while I tried Clonazepam, would make them effective again – but no such luck. They take the edge of the pain, but don’t really stop it. But I’m not as weak as I was at my worst on the Clonazepam at least.

Sinus Infection

I’ve had a bout of sinus infection that caused one side of my face to ache like a toothache. In fact I actually went to the dentist, thinking I had cracked a tooth clenching my teeth in my sleep while I was still on the benzo. The x-rays showed it was more likely a sinus infection. So my doctor put me on an antibiotic. He also told me to stop using the regular OTC sinus medicine I’ve been using, as my blood pressure was way to high. He said to be sure I buy a brand that has HBP on the label, and we bought some on the way home from the doctor.

Antibiotics usually give me digestive problems, but this time it hit as nausea and vomiting. I ended up having to get the doctor to call in something for that. So I haven’t really had what you could call a normal week yet since being back on my old meds. I can still hope that the pain level will subside.

Muscle Pain

It’s hard to describe these pains – I call them traveling pains, for lack of a better term for them. I will ache in one place, say my shin, for 10 or 15 minutes, rub it for a bit  or use a hot pad on it, then it subsides and within a few minutes my other leg hurts in the calf. Repeating the rubbing and heat, and the next thing I know it’s my neck that’s hurting. A few more minutes and my arm hurts. This goes on all day long and all night long. In the daytime, as long as my mind is occupied, such as when I’m working on the computer, it usually doesn’t take over my awareness. But let me get still, like at church? It’s NOT comfortable. The same thing at night – I don’t sleep well, waking up off and on all night long trying to get comfortable.

The odd thing is, I remember waking up during the night screaming as a young child, begging for my Mama or Grandmother to rub my legs. They called it growing pains back then, but now I wonder if I wasn’t already having MITO symptoms.

My Last Clonazepam

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Well, I “slept” without the Clonazepam last night. It wasn’t good sleep, by any means, as I have no idea how many times I woke up and waited to go back to sleep for a bit – but I made it through.

Of course, because of the long half-life of this benzo, I still have some of that last .25mg pill from Thursday night in my system. It will take the rest of the weekend before I dare try going back to my old meds – Methacarbamol and Neurontin. I have called for a Neuro appointment, but no telling how long it will be before I can actually see him.

Maybe this couple of months off my usual meds will make them work better for me again. I had been gradually increasing the doses to the maximum, because they were no longer helping with the muscle spasms and pain. And the high doses were making the brain fog worse. That’s why I had asked for a med change, and how I came to be back trying Clonazepam.

I decided to look back through all my blog posts for every mention of Clonazepam, as I had been on it once before, back near the beginning of this saga. At that time I was on Parkinson’s meds, and the extreme muscle weakness I experienced was attributed to the combination of meds. Now I know that’s probably not the case. The wet noodle muscle weakness I described back then is exactly how I’m feeling now.

Asking for Help Doesn’t Come Easy

DH has done his best to take up the slack here at home, helping with things I would normally do quite easily. I had gotten very frustrated with him, because he wasn’t helping. But he’s not a mind reader, and I hadn’t actually asked him for help. So we had a “come to meetin’ talk” the other night. Now the air has been cleared, and I’m getting more help. I still have to remind him, as he had gotten in the habit of letting me do a lot of stuff he once would have done automatically. His paralyzed leg and slow recovery from his heart attack changed both our roles considerably. But for now, I’m more in need of help than he is. And I’m getting it, sometimes after asking, sometimes without asking.

I did ask DH to bring the walker back upstairs, but I’m resisting using it, just as I did years ago. My DD fussed at me yesterday when she saw how slow and shuffling my gait has gotten, saying I needed to get over my pride and go back to using it. I know she’s right, but it’s a hard change to make. It feels like defeat. And in my mind it’s so much more VISIBLE than my gait – it makes me conspicuous, and that’s something I am NOT comfortable with.

This whole process of slowly going off one set of meds, then slowly going on another med, slowly increasing the dosage, then slowly cutting the dosage back to nothing has taken a couple of months. It’s the only safe way to transition from such powerful chemicals, and it’s the only way to find out if something different will help any more than what I was already on.

So I continue being a clinical trial of one, basically using myself as a guinea pig, praying each time that something will work to improve my quality of life.

Clonazepam Is NOT for Me

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Titrating Off Clonazepam

Last time I wrote I was still slowly ramping up the Clonazepam dosage, hoping to get some pain relief and help with my hyper emotions. Well, it did calm down the startle reflex and extreme frustration and irritability I was experiencing, but it did NOT help with the muscle spasms. In fact it made my muscles so weak that I’ve been doing a lot of shuffling of late, either because I could not lift my feet, or due to the fear I would fall again, if I did pick up my foot in mid spasm.

So now I am working on titrating back off of the Clonazepam. Even when I was up to three .5mg  pills a day, I did not get any pain relief, so it just wasn’t worth it.

I’m down to .5mg at night, but not taking any during the day. Yesterday was horrible, with legs so weak and painful it was all I could do to get up from the chair, but today is better.

I don’t plan on going back on the Methocarbamol and Neurontin until I’ve given plenty of time for the Clonazepam to be out of my system. They didn’t help much, and made the brain fog worse, but it looks like they are still the best meds I have available. The half life of this benzo compound is like 60 hours, so it takes a looooong time to rid the system of it completely. That long half life is great for smoothing out anxiety issues, not so great when it makes the muscle weakness worse.

Another Diagnosis Anniversary

Another birthday has come and gone, making this my 10th year with some kind of movement disorder diagnosis, not counting all those years when doctors dismissed me as just a whiny hypochondriac female LOL. Initially it was thought to be Parkinson’s, but was eventually conclusively diagnosed as Mitochondrial Myopathy.

I’m basically my own doctor at this point. No new research findings in the years I’ve known what was wrong, so it’s left to me to try various nutrition programs and what I think might be helpful in the way of meds – with my Neuro’s approval, of course.

At my last appointment, my Neurologist broached the subject of me eventually being fitted with some kind of AFO braces to support my legs better, as my age is beginning to work against me. Exercise intolerance is one of the hallmarks of this disease, so I have to strike a balance between not moving enough (trying to keep from hurting) and moving too much (which damages muscle cells and does more harm than good).

So I thank God for the better day I’m having today, and continue to do what I can to improve my quality of life.

Praising God, from whom all blessing flow!!!

Emotions and Muscle Spasms Stronger

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I’ve been having problems with acute emotional reactions for several months now – sometimes extremely nervous and very easily startled. Loud noises are especially uncomfortable – almost like I have super hearing. I had a lot of emotional lability (more recently called Pseudobulbar affect) years ago, when I was wrongly diagnosed with Parkinson’s.

For the last few years I’ve been living off of Methocarbamol muscle relaxers and Neurontin for nerve pain, and taking a large number of supplements in an effort to keep my nutrition level as high as possible.  But it was taking higher and higher doses of muscle relaxers to get any relief, and the shoulder jerking had even come back. So I asked my Neurologist to try something different.

Since I was experiencing heightened emotional responses, as well as more and stronger muscle spasms, he put me on a low dose of Clonazepam – an anti-anxiety med that is also used off label to calm muscle spasms. I started on the lowest dose, but now I’ve bumped it up a bit. It does seem to be taking the edge off the startle reflex and inappropriate nervous reactions, but the muscle spasms continued to worsen.

Trying Clonazepam

Several weeks ago my calf muscle cramped hard just as I put weight on that foot, and down I went, falling flat on my face. I was very lucky to only have a few bruises. The leg continued to jerk fiercely for several days, so I had to be extremely careful to not take a step without holding onto something. I called the Neuro’s nurse, and he added the Methocarbamol back with the Clonazepam.

I’m still spasming more than I was for a while, so I spend most evenings on the hot pad trying to relax the muscles.

I’m extremely thankful that I had already asked for more help from my Neurologist and there had been time to bump the Clonazepam dosage up a bit before a new turmoil hit our lives.

Care Giving Again

We are now back in the “care giving business”, trying to help a friend deal with a serious hospital stay and accept a Rehab Nursing Home situation. He’s not an easy person to get along with. He’s antagonized so many people over the years that he’s burned his bridges, except for a few families still willing to help him. It’s a shame, but he’s brought it on himself, with poor health management and lifestyle decisions and frequent angry outbursts over many years.

If it weren’t for the Clonazepam I don’t think I would be able to survive the emotional upheaval he seems to keep stirred up.

So for now at least my “new normal” consists of dealing with a cranky old man who is too sick to live independently. As his Nursing Home “Sponsor” there’s lots of paper work and responsibilities to deal with there, and of course Hubby and I will be visiting him once or twice a week.

The rest of the week I’m trying very hard to relax and rest as much as I can. I’m very thankful that my dear Hubby is so supportive, picking up the slack around the house when I don’t feel like doing much. We make a good team.

God finds good use for all our life experiences, so being care givers for our Alzheimer’s parents,  parenthood, plus teaching school for 29 years have prepared us about as well as anyone can be ready to deal with a curmudgeon in failing health LOL.

We covet your prayers both for him, and for us!

Bones, Muscles, and Pain Equals Surgery

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Bones

Two years ago my bone scan came back showing excessive bone loss. My mother’s hip broke and caused her to fall (not the other way around). That, and the scan results, put me in the high risk category, so I’m very motivated to improve my bone density.

My OB/GYN put me on daily Evista to treat the Osteopenia, but I had a severe muscle spasm problem while on it. Not surprising, considering how much jerking, twitching, and trembling I’ve had at various times over the years, due to my Mitochondrial Myopathy. I stayed on the Evista for two months, thinking surely my body would adjust to it, but it just kept getting worse.

(My Orthopedist suggested I try Forteo, which is a daily self administered shot, and I have not had any bad side effects with it. I’ve been on it for eight months now.)

Muscles

Even after I stopped taking Evista, the muscle spasms didn’t stop, particularly in my upper back and neck. I started upping the doses of Methocarbamol muscle relaxer and Neurontin (for nerve pain), trying to control the pain. The more pills I took a day, the more foggy I became. I couldn’t function without the pills, and just barely with them.

My Neurologist did another MRI on my neck and sent me to my Orthopedist for a series of epidurals. These helped, but not consistently, and they will only do four a year. So the relief from pain was fleeting. The last epidural I had didn’t help at all.

Pain

By February of this year I was in severe pain all the time. It had radiated down my arm, midway down my back, and gone up to the top of my head. The headaches felt just like someone had a huge nail pressing into the top of my skull. February 25, 2015 was my turning point. I ended up in the ER with my blood pressure over 200, and my head about to explode. They brought it down with IV meds and sent me home.

Surgery

I started on Amlodipine blood pressure pills and went to my Orthopedist to ASK him for surgery. After looking at the new X-rays and MRI of my neck, he agreed. On March 24th I had Anterior Cervical Discectomy and Fusion (ACDF) of C4-C5 and C5-C6. I stayed in the hospital that night and came home the next day. The hospital stay is a blur for me, because I was on a Morphine pump. About all I remember is the nurse telling me to “push the button” over and over. And I remember choking and gagging on whatever it was they tried to feed me.

Recuperation

I had researched the surgery, of course, so I was aware that they go in from the front of the neck, moving the esophagus aside so they can reach the disks and vertebrae. Hoarseness is a common side effect of this surgery and often swallowing difficulties as well. For most people the hoarseness only lasts a few weeks. At first it was an effort to squeak out even a syllable or two, and everything I tried to swallow choked and gagged me. And there was more swallowing pain than I had expected. I should have known there would be considerable pain; they sent me home with a prescription for 90 Norco tablets.

It’s been about six weeks now, and I’m still a little hoarse, although much better than I was to begin with. I’ve been using Thickit to make swallowing liquids easier since the first week at home. I’m needing it less and less now.

Outcome

The voice and swallowing problems have been very frustrating, but become less of an issue each day. But the neck, shoulder, and back pain have diminished from 8-10 to 3-4!!! I’m no longer on blood pressure medicine, and I usually only take two muscle relaxers a day.

I was apprehensive about having this surgery, but I’m glad I did.

I consider the operation to be a Success!! Praise God for his gracious healing.

WOW Has It Been a Year???

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I could just as easily have titled this post as “WOW Has It Been a Year!!!”.

The last post was on November 3 of 2012, and here it is November 10 of 2013. So much has happened that it’s hard to imagine. But one thing is so crystal clear, and that is that we have a LOT to be thankful for!

On November 28, my wonderful hubby had emergency open heart surgery for what’s called the Widow Maker heart attack. He did well after surgery, except that something they did in surgery left his left leg paralyzed from the knee down. That slowed his recovery considerably, but he improved enough to be accepted into rehab.

But instead of going home right before Christmas, he was back in ICU, due to a severe auto-immune reaction he had to the heart medicines he had been on since surgery. His platelets (that’s what keeps you from bleeding to death) dropped from a normal count in the hundreds of thousands to TWO thousand!

They started pumping platelets in in the morning, only to have his immune system kill them by the evening. They tried one treatment after another, still pumping in platelets each day, only to have the platelet count down that night. So the decision was made to put him on chemotherapy to kill his own immune system and hopefully allow his body to keep the platelets. He was on Chemo for four weeks, and his platelets slowly built up to the point that he was returned to rehab.

Every day I was writing to everyone on Facebook to pray for him, and a large part of our small town and our Church friends were deeply in prayer for him. I’m confident that it was prayer that pulled him through.

It was slow going there, as he was so weak from being in the hospital almost three months, but he’s a strong willed man and worked as hard as he could every day. They fitted him with a temporary leg brace, so he could learn how to walk again and do such simple things as getting his own socks on and getting in and out of the bed. So many things we just take for granted, he had to learn a new way of doing them, but he did, and his strength improved, and he came home at the end of February. Home Health made it possible for us to continue his improvement at home, and then he went to out patient therapy for several months.

Yes, we have much to be thankful for. In God’s wisdom, the very week that my hubby had reached the point that he was pretty much doing everything for himself, on Easter Sunday night I went to the Emergency Room with severe abdominal pain – and had surgery for a bowel obstruction from 35 year old scar tissue several days later! I had some complications, ended up with aspiration pneumonia, but came home well, but very weak. Then I had Home Health coming out to the house for ME! They did a great job of helping me build my strength back. In fact I was actually stronger when they finished than I have been for the last several years.

But more weirdness was in store for me, it seems. In October my OBGYN did my routine bone density test and found my levels were now in the range to require taking medication for Osteopenia, a dx I had been holding at bay for several years with doses of Calcium and D3 supplements. We discussed which prescription might give me the fewest side effects, and I started the dosage.

Almost immediately I started having severe joint and muscle pain – a sure sign that my Mitochondrial Myopathy was not happy with this medicine. Hoping the side effects would subside, I tolerated the pain, thanks to Neurontin and Methacarbamol, for about six weeks. By then the pain was so severe that I called the doctor and told him what was going on. He prescribed a different medicine, but I decided not to take it until my Neurologist said it was OK.

It took about six weeks to get to see my Neuro, and during that time I was getting by with the strongest pain and muscle relaxer doses I dared to take. When I saw him, he read the PDR sheet for the alternative the OBGYN had prescribed, and told me not to take it. He did ease my mind about how much pain meds I had been taking and actually told me to increase the doses. That has helped considerably.

I’m glad to say that hubby is still improving and walking quite well now with his custom brace without a cane in most situations. That’s a far cry from his time in a wheelchair, then walker, then quad cane, and now on his own. Although I am still in a lot of pain, I’m hopeful that careful exercise will gradually improve my situation.

So here we are coming up on Thanksgiving this year, and our family has more than many to be thankful for. We praise God for where we are today. Praise GOD from whom ALL BLESSINGS Flow!!!

 

Earning my Medical Degree

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I decided that the only way I was going to be able to get an accurate picture of what nutrients and supplements I was taking was to get out all the bottles and make a spreadsheet of each and every nutrient in them, with the amount of each vitamin, mineral, enzyme, etc., they contained.

That task took me a couple of weeks, because I kept getting confused by all the various ways different bottles displayed their contents. But I finally finished it, and I now know how much each pill costs me a day, how long a bottle lasts, and exactly what the total is for each supplement. I found one, D3, that I felt sure I was getting too much of, so until I can see a Nutritionist, I’ve cut that dose down considerably.

I’ve asked every medical doctor I’ve seen in the last month or so if they could refer me to a Nutritionist, with very little help in that direction. I saw my Neuro last week, and he gave me a recommendation. I have an appointment with that Dr. in November. Until then I’m basing my supplement regimen on my own attempts to do research.

I feel like I’m studying for a medical degree!! And I’ve about decided I know more about Mitochondrial Myopathy than 90% of the doctors I see.

My Neuro has finally decided that it’s time to try to do something about the ongoing pain I have in my neck, down my arm, up into my head, and in the mid back under my shoulder blade. So I had an MRI Monday. The tech really did all she could to make me comfortable, but lying still on my back on a hard surface is just something I can’t do. About half way through, the nerve from my neck going past my elbow and down to my pinky finger was causing such intense pain that I started having Myoclonic jerks – all that did was make her have to repeat one of the series – and make me lie there that much longer!

I haven’t recuperated from the MRI yet. Still feel completely worn out, plus I had another doctor’s appointment yesterday to make me even more tired. I did get some blood work done there that I’m quite anxious to see the results, compared to a year ago when they were so abnormal. I had another appointment scheduled for tomorrow, but I postponed it.

The epidural is scheduled for next week, and I’m trying really hard to remain positive about it. I had epidurals many, many years ago that gave me great relief, and I’m praying for the faith that I will get relief from the ones coming up. It usually takes several to get maximum results. My fear, that I’ve not totally overcome, is that the steroid will send me into a tailspin of weakness. That has happened to me twice in the last 10 years – once when I was on Parkinson’s meds, and last year when I had massive steroids to treat Angioedema (severe swelling of the lips and face from a drug reaction). Both of those times I was barely able to gather the strength to talk, eat, or move around at all for months afterwards. I pray I don’t have that kind of problem this time.

I do intend to continue with the series of posts I started about the various supplements I take, as it helps me to think through what the benefits to me are and understand more fully the mechanism by which they work to improve my energy.

I covet your prayers over the next week, and I pray for the faith to depend on the Great Physician, who DOES understand my disease completely!!!