Category Archives: Treatments/Drugs

The Age of Overkill

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Overkill: “An excess of something (such as a quantity or an action) beyond what is required or suitable for a particular purpose.”

Life was simple in the 1950’s. Throughout my long life, I’ve witnessed the evolution of product choices, variety, and quantity. Vehicles, foods, gadgets, electronics, medicine… On the one hand, it’s wonderful to have so many things to choose from. On the other hand, more isn’t necessarily better.

Overkill is stressful; it takes a lot of time and energy to figure out what/where/how to buy something and which is the best value.  The learning curve is constant with new updates and inventions to try or buy. Overkill can easily lead to over-spending, over-shopping, over-eating, over-doing, over-treating…Overkill can even kill.

Especially in the medical field. Our medicine cabinet in the 1950’s contained aspirin, Pepto-Bismol, Caladryl, bandaids, a bottle of hydrogen peroxide and a thermometer. We had annual checkups with our GP and eye doctors at their home offices; emergencies in between were handled by a single call and a same-day visit.

Today, the quantity and types of doctors, specialists, tests, medications/treatments are amazing. Obviously, having what is available in medicine is tremendous for our health and wellness needs. The downside, however, is that the excess of so many options with doctors, treatments and healthcare specialties has created complicated health management. And legal ramifications (another topic, another time.)

?????????

Who takes care of coordinating our previous/current day status of doctors and medications?  Many people assume that current-day technology does this. Others assume their PCP does this. During a visit with my PCP yesterday, my list of meds was not updated since our visit six months ago. Only one of the four specialists I had seen sent him an update of that visit. It was no surprise to either one of us. Dr. S. added that it’s a now a common problem, and it’s being exacerbated by the increasing number of specialists.

Age brings wisdom. Having lived for 67 years, (42 of them w/ MS), gave me quite an education with doctors and medicine.  My own health team grew to include many PCPs, 8+ MD Specialists, P/T & O/T to help just about every part of my body. I can’t count how many times or days I spent in hospitals for myself or other family members.

Who keeps track of my medical management? I do, because the  constant change of all variables over time can’t possibly be coordinated by anyone else. If anyone believes that their PCP, insurance, computers, etc. does this, they are mistaken.

I have always kept a journal and made sure every drug, doctor, pharmacist was up-to-date and connected with my current health status. For every new visit and prescription.  It’s my responsibility, even if a screw-up happens in our health system (that does a great job of covering their butts).

Another consideration: who do you trust as a backup for your medical management if you get in a situation that you can’t do it on your own?

In a recent blog article, I told the story of my mother.  Poor medical management almost killed her. Assisting my stepdad with her care management since January revealed many previous mishaps. During the past couple of years, she had been overmedicated and prescribed several wrong medications. Doctors (i.e., PCP, neurologist, GI specialist….) were not coordinated with her meds and updates; follow-up visits with the team of doctors did not occur. Stepdad is her health care manager; but in some cases, two heads are better than one.

It’s complicated to live nowadays. It’s complicated when sickness befalls us. It’s complicated when we grow old. It’s complicated to die. Crap happens when you least expect it, whether it’s you, your partner, your parents……..

Medicine is complicated. I don’t trust anyone but myself with my medical management. I read every word in every document before I sign it. My husband is my backup.

What about you?

 

Debbie Petrina
Author of Managing MS 
       Kindle Unlimited
Moderator, MultipleSclerosis.net 

 

Getting MS Stem Cells Internationally for MS Damage Repair

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                                         Dr. Louis Cona and Debbie Petrina

I did it! And would do it again.

After much research and living with this beastly disease for 39 years, I found the opportunity I had been waiting for and took it.  I am 64 years old, in perfect health, and probably would not see anything like this available in the United States for the rest of my life. And, it was not expensive relative to anything else out there for treatment that suited me.

I never took a disease modifying therapy/pain pill, practiced wellness (diet, sleep, exercise…) and am a paraplegic; though looking at my fit 105 lb. frame you would never think I had MS, or the other 10+ symptoms I have had to manage.

Where?

I went to DVC stem (https://www.dvcstem.com/ ) in the Cayman Islands, which stands for the Da Vinci Centre.  Though existing for over ten years, the clinical trial for MSers began only about one and a half years ago.  No, it is not considered a cure, but the purpose is to repair damage caused by MS and regain function. What makes them so special?

  • It is a pioneer and practice by Medical Director Dr. Louis A. Cona, a licensed physician and surgeon, who did transplants and general medicine for forty years. He has a General Medical Office on Grand Cayman in addition to the Da Vinci Centre.
  • They are one of the most highly regulated clinics in North America offering this type of expanded cellular treatment. fully licensed and inspected by the government of the Cayman Islands. As a British Overseas Territory, healthcare regulations are extremely strict, on par with the US, UK, and EU. The entire medical staff is fully registered and licensed, and the stem cell protocols are IRB reviewed and approved by a board in the United States.
  • DVC Stem is partnered with Vitro Biopharma, an award-winning medical laboratory located in Golden, Colorado, which is fully FDA registered. Cells are only sourced from American Association of Tissue Bank (AATB) certified suppliers of full term, ethically US donated human umbilical cords. The selection of these donated tissues is extremely regulated and strict. All of these cells are expanded using safe and standard protocols and are then flown overnight in sub-zero containers directly to the clinic for immediate treatment. To ensure maximum treatment effectiveness, the cells are expanded to as much as 300 million cells before being administered.  http://www.vitrobiopharma.com. There is no other country that has these standards.
  • DVC Stem uses cord tissue-derived mesenchymal stem cells sourced from US-donated, full term human umbilical cords. While other common sources of stem cells are fat tissue or bone marrow taken from the patient directly, there are many benefits to using cord tissue. Cord tissue-derived cells are essentially “new”, in their most primal state, free from the effects of aging or disease. Additionally, they are minimally invasive to the patient, without the need for any extractions, free from immune rejection, and have zero risk of transferring viruses or other communicable diseases.

The Procedure

  • Treatment consists of a two-day period including a 3-hr. IV transplant of 300M cord tissue-derived stem cells, as well as a variety of therapies designed to aid stem cell activation and potency (chiro, physiotherapy, acupuncture, lymphatic massage, etc).  I was delighted—no chemo, immune-system wipeouts, hospital stays!!!
  • To apply for the treatment, a phone consultation with Dr. Cona is arranged to discuss your specific case and candidacy for treatment in depth. He is very selective in approving potential patients.
  • After the consultation and acceptance by Dr. Cona, I was given two packets of information to be completed by me and my doctor, as well as a two-page list of current tests, labs, doctor visits, vitals… that needed to be performed. The purpose is to rule out any diseases, infections, illnesses etc. to prevent diverting the cells from repairing something else and not MS damage.  (It was maddening, but I thought it made so much sense.)
  • I researched everything I could think of, and personally talked with others who had actually gone to DVC for cells.  About 150 MSers went there over the past year and a half. Not one person has had bad side effects, and all showed different types of improvement in different ways.

Of special note is my personal assessment/professionalism of all staff, the sterility and comfort of the clinic.  Dr. Cona was personally with me when he did the three-hour infusion in all his sterile garb, and we talked non-stop the entire time.  He wants to know his patients, and at discharge, he said that I or my physicians should feel free to call him anytime.  He has been courted by other countries (Panama, China, India) to partner with him for knowledge and profit, but has declined all of them. His only interest is his patients’ well-being, not profit.

After returning home, follow-ups or “markers” of MRI’s etc. are requested to determine progress at various intervals.

My Progress

I put a list together of all of my MS symptoms, and have kept a journal since May 29, 2019 that was my IV date.  It has only been two weeks, and by June 12th here are some specifics from my journal:

May 29, day of infusion
Very bad headache, dizziness, light-headedness, foggy throughout evening. Trouble sleeping.  Symptoms all gone the next morning.

June 2
Overall, feel good.  More endurance, ability, time doing aquatic water therapy (one hour).  Clear head.  Feel stronger despite rigorous pace of travel and unpacking, etc after trip.

June 7
Continued as above. Today, balance seems improving.  Took Grizzly on his entire walk this morning without having to hold on to an armrest.  Spasticity seems to show improvement.  Less tremors and tightness, especially in the morning when I get up. Was able to do 9 push-ups on wall in pool.  Could not do this before.

June 9
Did 10 pushups on wall in pool. No nap today—just a 45-minute lay-down– very busy all day.  (yesterday was a high-anxiety day/ 112-degree day).

June 11
Spasticity definitely improved:  longer stretches between baclofen pills (3 instead of 6 pills/day), easy to get catheter in, sometimes start to pee without catheter.  Balance getting better–washed hair with both hands and am able to do many things without needing to hold on with one hand for support.  Feeling stronger—did 12 pushups on side of pool. Seems easier to move legs around and up, though I still can’t do it on my own.  Only lower back pain now.   I can hold a pen more securely and write better. Bowels still messed up. (Note: this is happening on a day following 3 days of high anxiety/stress and excessive near the triple digits.)

June 12th
Today is a “pay day”.  I have been pushing too hard and the heat/anxiety was overwhelming.  I’m going to listen to my body and just rest and sleep.

To learn more about the DVC stem cell treatments, I recommend visiting https://www.dvcstem.com/.

Additionally, here is a link to an article put together on how stem cells are used to treat the symptoms of MS: https://www.dvcstem.com/articles/stem-cells-for-ms/, and an article about David Lyons, founder of the MS Fitness Challenge: https://www.dvcstem.com/articles/david-lyons-ms-fitness-challenge/. Being a member of David’s site enables persons to receive the stem treatment for $17,500. David went to Dr. Cona in Oct. 2018 with a leg that was dragging with a dropped foot.  He is now jogging!

Would I do it again? Absolutely! I had nothing to lose except my time and $22.5K for total fees and all travel expenses. It was safe with no side effects. At the date of this post, Pharmas offering treatments in the U.S. cost $50K-$70,000 annually for DMT’s (disease modifying therapies) for MS. They are only effective <50% of the time, have side effects, and require intensive follow-up that is exhausting. I was not desperate enough to consider the high risk of HSCT in U.S. clinical trials.

Stem Cell Update—January 20, 2022

Since my infusion, my neuropathy symptoms remain improved–less numbness, burning and stabbing sensations. Hand coordination, sensory and strength remain good e.g., can button buttons, grip a pen and write, feel objects in my purse, shuffle cards… (could not do any of these things for years prior to receiving the stem cells) Much less overall fatigue and more energy since the procedure. Cog functioning is very good except for forgetfulness, that is probably due to my age. No improvement in bowel/bladder functions, or ability to walk. Can stand, but only for long enough to pivot or do ten partial leg squats holding on with both hands. I have no doubt after all of this time that this stem cell procedure was successful for me.

Debbie Petrina
Author of Managing MS
MS Counselor/Living with MS 39 years.
http://debbiems.com/

 

 

 

 

 

 

How do you Manage MS?

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“Want some help?”

Everybody wants a cure for MS, to halt the progression of it, and restore the damage it causes to us. But what do you do in the meantime until those things happen?

You manage your MS effectively.

If you ask people with MS how they manage it, most would respond by saying what treatments/meds they are taking and then add that they may exercise, do yoga, etc.

While this is true, it’s only a small part of a big answer. Everything about MS is complicated: the diagnosis, the symptoms and relapses, treatments, health team support, relationships, the explanation…  ALL of these things have to be managed effectively in order to survive MS.

One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case. Yes, let me repeat that– One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case.

I know, and I know countless others who know. Beginning in 1980, I’ve lived with it for 34 years, and have been actively involved in the MS community for nearly thirty years. An ordinary person of moderate means, I went through motherhood, had a career I had to eventually give up, managed a household, and enjoyed life.

In a nutshell, these are the main objectives in managing MS:

1. Prevent sickness/infections, physical problems, and long-term chronic stress.
Why?  Because any of these will trigger a relapse. And relapses usually result in progression and nervous system damage.

2. Take care of  your body in all ways to be healthy.
This includes getting enough sleep, exercise, eating sensibly, managing stress, being mentally and emotionally happy, etc. This also includes things like weight watching, no smoking, etc.

Why?  Staying healthy keeps one’s resistance up to prevent getting sick (thus preventing relapses) as well as keeping symptoms from intensifying. In addition, maintaining wellness helps prevent your body from getting other serious problems like high blood pressure, diabetes, poor circulation…

3. Carefully choose and monitor your treatments.
While drugs are often helpful for treating symptoms, relapses and slowing progression of MS, there are downsides.  First, one must remember that all drugs have side effects that add stress and other impairments to the body. Second, MS is a life sentence; one may live decades until a cure is discovered to halt progression or restore damage. Every drug taken is passed though the liver and has other risks. There is not a treatment that exists today that totally halts progression, relapses, or improves symptoms.

4. Use a 2-prong approach when managing symptoms.
In addition to using medications, there are SO many ways that MS symptoms can be managed non-medicinally—pain, spasticity, bladder issues…  Often, using a combination of using medicinal and non-medicinal means together can be helpful as well. For example, I take baclofen and do stretching exercises daily to reduce my spasticity.

In addition, alternative non-medicinal therapies  have been successful like yoga, acupuncture, massage, pilates, etc. to help with symptoms.

Managing MS effectively requires a tremendous amount of knowledge and support. It’s hard, it takes time, requires change, but it works.  However, learning to managing MS is a daunting task because we know that no two MS cases are alike and the disease is so unpredictable. Furthermore, because there is so much information available from so many sources, one can become overwhelmed and confused.

Want some help?

My book “Managing MS: Straight Talk…” is now available on eBooks for only $2.99 . You can also check out my website below for oodles of info—articles/resources with links, videos, my MS blog of nearly seventy articles, my credentials… The information is accurate, easy to understand, and concise.

My personal mission is to help others dealing with MS, and these two tools—my book and my website—will definitely help you with something. There is nothing to lose, and I guarantee something to gain!

 

**Video:  “How to Manage MS: Two Tools”
https://www.youtube.com/watch?v=iliPH66JCaw

www.DebbieMS.com
Author/MS Counselor/Living with MS

Where and How to get Your MS Information

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                                                  “Tips and Cautions”

The upside of the internet and social media is that mounds of information about MS are available immediately with the stroke of a few keys and searches. Folks need as much knowledge that they can get to help them understand and handle this complicated disease.

The downside of the net–besides being overwhelming–is that one has to be very careful with the validity of the source and information of what is read. I read discussions between MSers on Facebook, other social media, and MS Association sites and am concerned by how much info is misleading, incorrect, and cause for fear. Bad information causes bad decisions.

1. Understand which treatments/drugs help symptom improvement.

While it is gratifying that DMTs (Disease-Modifying Therapies) are reducing relapses for many MSers, participants in some discussions talk about how their symptoms improved when they were taking a certain DMT.

This is not true. Here is what one MS specialist-neurologist stated:

“The disease modifying medications do not directly help with symptoms in MS. these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better. I told them that the medications are to keep from getting worse and not to make one better.”(see Source #1 below)

Now, there ARE drugs to directly and successfully treat symptoms (e.g. depression, bladder incontinence…), and relapses (e.g. steroids). These often improve symptoms and help a patient feel better, but not alter the disease course or direction of the disease itself.

2. No treatment exists today that will stop the disease activity/progression and damage completely, or reverses it. (see Source #2 below)

Recently, I followed a discussion on FB about stem cell treatments that miraculously accomplished this for them.  Most of the participants that had the procedure were diagnosed within the past two-three years. These participates probably did not know their personal pattern of relapses; it’s not uncommon to lose one’s sight or have impaired mobility for a long stretch of time in their initial relapses. Their recovery was more likely due to the relapse being over and they’re being back into remission with little residual, which is very common in the early years of the disease.

Furthermore, it takes a while for a patient to understand their own case of MS and how their body responds to a variety of things—both medicinal and non-medicinal. Nowadays, it is even more difficult since a newly-diagnosed person during their first couple of years are receiving DMTs and drugs for relapses and symptoms all at the same time. What is doing what?

3. Be careful with reading statistics, study results, etc.

I worked a number of years in my professional jobs doing financial analyses and market research. One of the things I know from that experience is that conclusions of studies can be misleading by what numbers are used and how numbers are presented. I’ve become quite the cynic about this.

For example, one might read “according this study, 50% of patients using XYZ showed a 38% reduction in…” How many people were used in the study, what were their characteristics, how long did they take XYZ, what were their side effects, who did the study, etc. You have to dig deeper, be cautious, use common sense and talk to your professionals when you hear something of interest and want to pursue it (like trying a new medication).

How would you feel if you discovered that a study was based on eight people?

4. When gathering information, consider the following:

• Use common sense and logic.
• If something sounds too good to be true, it probably is.
• Listen to your gut, not what you want to hear.
• There is no cure, and if something says you will be cured, throw it away. You can manage MS and even control it in many ways, but there is no cure yet.

5. What are good Sources of Information?

MS associations and Pharmas are good sources of information that can be trusted for acquiring basic MS knowledge about the disease itself, the symptoms, current research/events that are happening, and treatments that are available. They also can be helpful in providing programs and forums for people dealing with MS to get together and interact.

Where to use caution?

• When listening/reading information that MS associations, Pharmas, and neurologists present statistical information about study/treatment results. They all recommend DMTs as the first line of defense, and one has to be careful of taking this information at face value. Re-read #3 above, and know that numbers/statistics can be arranged to project just about anything. Dig deeper into what you are told. You may be surprised.

For example, a current starting point to get specific data on DMT’s is Source #2 below. And read closely. On Page 13, the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS)<3 after 10 years.  After 20 years they found while 51% remained benign, 21% had progressed to EDSS >6 and 23% had converted to SPMS.

The point? Stats like these could help a patient weigh their options more carefully.

• A standard line of advice is “consult with your doctor.” Do you trust your doctor? How experienced is your doctor with MS? Does your doctor listen to you and talk with you, respect your questions and doubts? If the answer is no to any of these, it’s a red flag. Remember that doctors get kickbacks, and truthfully are limited to prescribing drugs and giving referrals. Get second and even third opinions.

• Social media sites are wonderful for sharing information and feelings with other peers, but remember that two-thirds of effective communication is through body language. There is no eye contact, no voice to hear, etc. that can make judgment of people difficult. Learn the background of the people you engage with. If reading an MS blog, make sure it is a credible, respected and experienced person that is doing the writing.

Here is a link to my Resources/Links page on my website that is quite comprehensive, not overwhelming, and judged by many to be trusted http://debbiems.com/links-resources_271.html . (You can check out my background, experience and credentials in other sections of my site.)

(Sources)
#1 The NPR Diane Rehm Show (9/24/2012) aired “Diagnosing, Treating and Living with MS.” A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

#2 The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidence http://bit.ly/1oEnTqY  September, 2012

www.DebbieMS.com
Author/MS Counselor/Living with MS

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Tisch MS Research Center: Stem Cell Trial News

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“Read, Support, Spread the Word”

March 17, 2014

The words “Repair—Regenerate—Renew” are music to the ears of us with Multiple Sclerosis. Every day we get a step closer to this goal, and I was asked to pass on the following information about Tisch MS Research Center’s Clinical Stem Cell Trial that is almost ready to launch. They are just shy of $200,000 and are asking for donations. That’s all that is needed to get started. Please read the following, help if you can, and spread the word:

New York, NY- March 17, 2014 – The Tisch MS Research Center of New York (Tisch MSRCNY) today announced that they have launched a dedicated campaign on Indiegogo to raise funds for their FDA-Approved Phase I Clinical Stem Cell Trial.

The non-profit research center aims to raise $300K to be directly applied to the first twenty patients selected to participate in the clinical trial. “We are excited to embrace the online technology that is now available to us to help fund our mission,” stated Dr. Saud A. Sadiq, Chief Research Scientist at Tisch MSRCNY and the study’s principal investigator. He added, “The FDA’s approval in August 2013 of this treatment provides patients and their families with a realistic hope that reversal of the damage this disease has caused is possible.”

The groundbreaking study will investigate a regenerative strategy using stem cells harvested from the patient’s own bone marrow. These stem cells will be injected intrathecally (into the cerebrospinal fluid surrounding the spinal cord). This will be an open label safety and tolerability study. All study activities will be conducted at the Tisch MS Research Center and affiliated International Multiple Sclerosis Management (IMSMP).

“When it comes to a mission of this significance, we will leverage every means possible to secure funding,” said David Greenstein, Chairman of the Board of Directors at Tisch MSRCNY. “It was only natural to turn to the industry-leading capabilities and international reach of Indiegogo to help bootstrap the crowd sourcing needed to enable this important clinical trial.”

MS is a chronic human autoimmune disease of the central nervous system that leads to myelin damage and neurodegeneration. It affects approximately 2.3 million people worldwide.

To view the campaign and make a donation, http://bit.ly/1idZk2L
or visit: http://igg.me/p/696737
For more information on this study visit: www.tischms.org

www.DebbieMS.com

Prednisone & Corticosteroids: Helpful Tips

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“What doctors/pharmacists don’t tell you.”

January 3, 2014

It is amazing how frequently the subject of steroids comes up. Just in the last two weeks, three people told me they were on prednisone and they were all irritable about the side effects. One was taking them for sinus problems; another was taking prednisone for arthritis. The third was taking them for an MS flare-up.

They are powerful drugs and are prescribed often for people with and without MS. Why? Because their primary purpose is to reduce inflammation. And inflammation occurs in all parts of the body, and these drugs do help.

But there is much to know about steroids, and unfortunately, the doctor and the pharmacist never tells it all. The first experience with steroids is horrifying to say the least, and creates tremendous confusion and stress. I personally hated them in the beginning, but after I understood my own body’s reactions and the fact that they did work for me, steroids became my friend.

For folks with MS, corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). Solu-Medrol is given intravenously for 3-5 days usually at home (about 1-2 hours per day). Prednisone is given orally usually over a 10-14 day period, beginning with a very high dosage (e.g. 80mg/day works for me) and tapering down the last week to 10 mg. by the last day.

What to know about steroids:

• Again, the purpose of steroids is to reduce inflammation. When the dosage is high, the immune system will become suppressed. Therefore, you want to take all measures to keep your resistance up and your exposure to infections, colds and viruses low. If you currently have an infection or virus causing the flare-up, try to get rid of the infection/sickness before getting on the steroids if possible.

• A very common side effect of steroids is water retention. Eliminate as much salt as you can from your diet while taking them. This goes beyond table salt. Canned, frozen and packaged foods, pickles, condiments, luncheon meats, etc. are loaded with sodium; so avoid these and eat bland and fresh foods. Often, people will get what they call a “moon face”; the face can become full and rounded.

• Appetite usually increases when taking steroids, so stick to snacks like carrot sticks, celery, apples, or unsalted popcorn. The sacrifice of a strict food regime for a maximum of two weeks is well worth the extra pounds you won’t gain and have to worry about later.

• Once you start steroids, follow the complete program and do not just quit taking them. If you do, it can inhibit your adrenal glands from producing the natural amount of cortisol later.

• A universal complaint is insomnia. Speak with your doctor about sleeping pills. Even with a sleeping pill, you may only get four to six hours of sleep. Try to read, do paperwork, or anything that will keep you from dwelling on not sleeping.

• There are many other side effects when taking steroids; the amount, type, duration will be different for everyone. For example, I get supercharged and euphoric when I’m on steroids, especially when they kick in and my symptoms are improving. I also get very constipated. Other frequent complaints include irritability and mood swings. If you are anxious, consider asking your doctor about an anxiety pill to minimize stress.

• For women, it is not proven yet whether steroids affect birth control pills. It is always a good idea to use additional protection while on steroids.

• Try to temper your expectations and not compare yourself to anyone else. Some people respond faster and better than others. Take notes everyday about what is improving, what isn’t, how much… It will help with your next episode. You will learn your own body reactions and patterns as time goes on.

• When a steroid program is finished, a person will often go into drug withdrawal. Symptoms may worsen again, and different side effects can pop up. For me, I get the shakes, anxiety, weepy, acne, some hair loss, sleepy; and my symptoms will be worse than before I even got on the steroids. After my “withdrawal” period, my symptoms will adjust to what will be normal for me; and all of the other side effects from steroids will go away. After having been on steroids on average of twice a year over the course of my MS, I’ve learned what to expect and how to ride it out.

• There are serious side effects to using steroids over a long length of time—like months or even years. These include things such as bone density loss. As always, one needs to weigh the benefits against the positives when taking any drug.

Sometimes, steroids work for a person, and sometimes they don’t. And of course, all people react to a drug differently—both in response to the effectiveness and to the side effects.

All you can do is try. If it works, great; if it doesn’t, well something else will have to be tried to alleviate the problem.

www.DebbieMS.com

MS: Disease Modifying Drug Therapies

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“Questions and Concerns”

April 5, 2013

On March 27, a news article stated “The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS.”

This is the tenth DMD (Disease Modifying Drug) that has been approved by the FDA to reduce the progression and activity of the disease. It is also the third DMD approved in the past two years that can be taken orally in lieu of an injection, exciting many persons who have MS.

The National MS Society and most neurologists, are strong proponents of these DMD’s, and recommend starting one as soon as a diagnosis is made. “Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration,” states an article on the internet front page of the National MS Society today.

Is it the best course of action to take for everyone? Here is a list of questions/concerns to think about when deciding whether to use a disease modifying drug:

1. Is it wise to start a treatment that was just FDA approved (or just approved in the past couple of years), without knowing the long-term side effects?

• None of the DMD’s decrease the relapses 100%; most decrease them in the 28-68% range. Is this enough to justify the possible long-term effects of possible liver, kidney or heart damage? Built up resistance? Other serious health implications? What if the person is only a teen or very young and has decades of life ahead of them?

• The biggest fear of having MS is the loss of mobility, although there are numerous other symptoms of MS that are disturbing. This fear is exemplified by slogans, ads, pictures and more. Yet, for years the statistics estimated that 25% of MS patients end up using a wheelchair during their life. After living with MS for 32 years, I am one of those people in a wheelchair. Maybe this sounds stupid to someone, but I personally feel that I would rather manage living in a wheelchair than with a damaged liver.

• What happens if the DMD is found to not work after all? News came last July that an extensive study suggests interferons, the basis for many DMD’s, did not reduce MS progression. This news was alarming. “Can this be true?–after all those years of injections, tests, office visits, side effects, dollars spent….” were comments expressed in social media.

Within the above-mentioned article, Bruce A. Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and Chair of the National MS Society’s National Medical Advisory Committee states “As with all newly-approved treatments, we will learn more about the benefits and safety of Tecfidera over time.” Hmmm—does this comment concern you?

2. Does the decreased rate of 28-68% of possible reduced relapses warrant the short-term side effects and other things people experience with DMD treatment?

• Yes, treatments do have side effects, and again they vary widely for each individual. Nausea, flu-type symptoms, dizziness, site-injection soreness and fatigue are some but not all common complaints. One has to ask and decide for him/herself if the treatment is worth it; for example, feeling like you have the flu 1-2 days a week after an injection. Or putting it another way, which is the lesser of two evils? In addition, I hear and read so often in social media about how frequently MSers change their DMD because of the side effects, or that it is not working in slowing the progression.

• DMD’s require much monitoring–doctor visits, MRI’s, clinic visits… The therapy adds more cost, are time-consuming and exhausting. Fatigue—a very disabling symptom 90% of MSers experience—is compounded.

• Taking a DMD is a difficult regime. It adds physical, emotional and mental stress on the body. These could lead to depression, and more fatigue. It is possible that the stress of taking a DMD could nullify any possible benefit of it for some people.

• Treatments are expensive. The price tag on this new treatment is $55-60,000! While some patients get financial assistance through the drug companies or being a clinical trial participant, many others pay thousands of dollars annually out-of-pocket. I’m becoming quite cynical of pharmaceutical companies when I see their expensive ads, exhibits and give-aways at events.

3. Should a newly-diagnosed person start a treatment without first evaluating how aggressive or mild their disease course is?

• Up until 1996, a type of MS included a “benign” course. Up to 20% of MS patients had this type of relapsing-remitting, in which few relapses occurred that would go away and leave very little or no residual damage or disability. Symptoms were primarily sensory, but could include others such as motor or bladder disturbances. The term is no longer used, and this type is now included with the relapsing remitting type.

The point is that many persons diagnosed with MS could have a mild case, and how would they know if they started a treatment immediately after diagnosis? In addition, a newly-diagnosed person is usually quite stressed and often prescribed other drugs to relieve symptoms or the relapse. The waters become muddy in knowing what is causing what, positively or negatively, when everything is happening at the same time.

• A newly-diagnosed person should take notes and keep a journal about their symptoms, reactions to any drugs given for a symptom or a relapse, etc. to learn about their own case of MS. Delaying a treatment of several months will make little difference in the overall course of the MS. Not taking care of oneself, feeling pressured by doctors/others, and chronic stress can affect the MS as much as not taking a DMD.

• Meantime, research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc. Use common sense, and remember that this is your body and ultimately your personal decision.

4. To expand on #3 above, has both the doctor and the person with MS evaluated his/her course for a reasonable period of time before starting a DMD?

• Each person with MS has a different course of progression, relapses and symptoms. No two cases are alike. Patterns of these factors will emerge after awhile. What are the frequency, severity, duration and residual of a relapse? Is the relapse being defined properly? MS is sensitive to many things, and several days or even a week of intensified symptoms does not necessarily indicate a relapse.

• The number and location of lesions being used as the sole indicator of disease progression can be leading. New and old lesions cannot always be distinguished and lesions showing on one MRI may not appear on the next one.

5. Do doctors honestly know if a slowing of progression is from a DMD? Couldn’t less lesions result from the natural course of the disease itself or any health/wellness program a patient is following?

• The truth is, DMD’s are difficult to monitor accurately. And it is worthwhile to note that DMD’s are not meant to make a person feel better.

6. Why isn’t there more emphasis on managing MS from a non-medicinal standpoint? Why are drugs pushed as the first line of defense?

• Since there currently is no cure for MS, the objective is to reduce the amount and severity of relapses to prevent further damage to the central nervous system until a cure is found. It is common sense that a comprehensive therapeutic approach should be taken to treat MS.

• There is no single drug to make MS go away. While drugs play an important role in helping symptoms, relapses and the course of MS, there are so many non-medicinal things a person can do to both manage and control it as well without side effects. Examples include:

– Taking care of oneself with proper diet, exercise, sleep, low stress…
– Not getting sick or infections since MS is an autoimmune disorder.
– Alternative therapies, such as Yoga, Pilates, Tai Chi, massage…

There are many MSers who use this approach successfully to manage their MS, while taking drugs for symptom relief or relapse treatment (corticosteroids) as needed.

Sure, I want a cure or an effective treatment just as much as the next person, but I have always weighed my options carefully. I’m only 57 and I have many of years ahead of me. So I have to make sure I do my research and ask questions in order to make the right choices. Shouldn’t everyone?

www.DebbieMS.com

Serious Effects of Getting Sick for MS/Autoimmune Disease Patients

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The season of colds, flus and viruses is upon us. For normal people, getting one of these is no fun, but they soon get well and life goes on. For those of us with multiple sclerosis, an autoimmune disease, these sicknesses are detrimental to our overall health.

 


What to Know

1. When a person with an autoimmune disease gets sick, those fighter T-cells from the immune system get to work to combat the invading bacteria or virus. Unfortunately those cells goof up on the job and attack the body instead of the real villains. For multiple sclerosis, the central nervous system is attacked; for patients of rheumatoid arthritis, the joints are attacked; for lupus, the body’s organs are attacked, and so forth.

For a person with MS, the attack means that inflammation in the nervous system will likely occur, causing present MS symptoms to worsen and perhaps causing new symptoms to appear. The probability of a relapse is high, often followed by residual damage to one or more areas of the CNS.

To make matters worse, because the immune system isn’t working properly, recovery time is extended. A normal person may recover from a cold in five days; recovery for a person with MS or an autoimmune disease may take up to ten days or even longer.

2. Drugs taken to treat MS (DMT’s) suppress the immune system. Corticosteroids used to treat MS relapses also suppress the immune system. These have a dual purpose: to suppress the immune system to avoid releasing the T-fighter cells and to reduce the inflammation that an attack ultimately causes. During an MS relapse, steroids (Solu-medrol, predisone…) are usually prescribed in high doses to quickly remedy these two problems. The downside to these benefits is that the person is left highly vulnerable to getting sick or infected because the immune system is suppressed.

Another example is an MS treatment available called Acthar. It is an option to treat MS relapses and inflammation differently from steroids; however, like steroids it suppresses the immune system and increases the chances of getting infections and illnesses.

3. Depression, anxiety and fatigue are common symptoms of MS and other diseases/chronic illnesses. Sickness and infections exacerbate these symptoms. As the winter season drags on, these symptoms are often affected even more. A rolling stone gathers moss…

What to Do

1. Take all measures to keep your resistance high and your exposure to infections, colds and viruses low:

• Make sure to get a good night sleep, eat properly, and drink plenty of water to keep the body healthy.  Take vitamins, especially the B’s to boost the immune system.

• Constantly wash hands, don’t share food or drinks, and never put fingers in the mouth, nose or eyes. Take hand sanitizer with you and use it often, such as in a bathroom, after reading magazines or shaking hands with someone. Avoid rubbing your eyes, sharing food, or putting things in your mouth, like a pen. Take your own bottle of water in lieu of drinking from a water fountain.

• Stay away from people with colds or viruses. If someone who wants to get together with you is sick, suggest having a phone chat instead. When it is someone you live or work with, keep your distance from them as much as possible. Put kisses and hugs on hold, and then double up on them when the sickness passes. Teach kids to wash their hands, use the chicken-wing when sneezing, and all of the things listed above.

2. With regard to flu shots, it should be a personal decision regardless of what doctors or researchers advise about shots. Many people choose to use commonsense methods to avoid the flu and don’t want the risk of any side effects from annually developed vaccines on what the ‘new’ strains are expected to be.

3. Check the inserts that come with your medications to learn whether they can effect the immune system.

4. If you have an infection (e.g. sinus), call your doctor for an antibiotic.

5. If you have a virus, try to hang in there and tolerate the MS symptoms until the sickness is over (even if it is causing a relapse/flare-up).

• Again, recovery from a sickness for a MSer is usually longer because of the immune system dysfunction. The waiting can be a real burden on our patience, adding stress. Getting on steroids while ill can cause a longer recovery period while leaving you exposed to getting something else.

• Take extra steps to rest, take care yourself, build the resistance up, and try to recover on your own.

• If you can’t hang in there, consult with your doctor about a course of action. While colds, flus and viruses cannot be treated with antibiotics, the symptoms of these sicknesses can be treated for comfort (example: a decongestant or cough suppressant).

6. If the cold/sickness is over and the MS symptoms stay intensified afterwards, then call the doctor to discuss steroids because at this point the MS is probably active.

7. Remember that heat has an adverse effect on many people living with MS. Having a fever that frequently accompanies a virus or flu can significantly intensify MS symptoms. Treat a fever with aspirin or ibuprofen, cool packs, and plenty of water/ice chips to reduce some of the negative impact the sickness is having on your symptoms.

8. Fight the winter doldrums by finding ways to overcome depression and anxiety. Rest often to help with fatigue.

While those suffering from MS or another chronic illness do not have control all of the time, there are things that can be done to have control some of the time. This is one of those times we can help take control.

www.DebbieMS.com
Author/MS Counselor/Living with MS

Medical Marijuana for Pain

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“It’s My Body”
August 20, 2012

 
It was the “burning to the bone” and “knives in my back” pain that provoked me to call my friend to get me some medical marijuana last night. I just went through a week of incredible stress—physical, mental and emotional—and the pain in my back is excruciating.

 
It is amazing how marijuana takes the edge off pain and gives me relief. Sure, there are pain medications like Vicodin or Percocet available, but I personally choose not to go that route since narcotics are addicting, cause constipation, and mess up my head and mental clarity.

 

Having advanced Multiple Sclerosis causes me to have pain from many factors:

*stress/tension
*spasticity
*posture
*stressed body parts
*nerve damage

I use a wheelchair, so the long hours of sitting intensify these problems. During the past week, out-of-state family came to visit and stayed at my house. Even though they pitched in to help, I was out of my daily regime of intermittent resting and exercising.

The stress from so much confusion/activity under my roof intensified my muscles to tighten, posture/spasticity to worsen, depression and moodiness to set in.

My usual relaxation techniques of deep breathing and Yoga did not de-stress me this past week. Then the barometer dropped and the rains came, increasing the pain even more. There’s no way to escape Mother Nature. If any doctor or researcher tells me that rain, barometric pressure swings and humidity coupled with heat does not affect a person’s multiple sclerosis, I say “bull crap.” I know my body and I know how I feel.

Pain is transmitted by nerves, and pain from nerve damage is different from the other types of pain. It doesn’t originate from muscles or bones, but from the central nervous system as nerve pathways are damaged by the MS lesions. This pain has been described as burning, aching, or stabbing. Sometimes there are prickly or itching sensations. Sometimes sensations get “mixed up”, where pain can be caused by the clothing that is worn. People who have had shingles can relate to this kind of pain.
After over thirty years of living with MS, I’ve accumulated a lot of nerve damage. When pain occurs from nerve damage, forget the aspirin or Ben-gay or any other over-the-counter meds. It just doesn’t work. Often, a couple of shots of scotch or ice packs will deaden the pain for me, but not always.

 
Chronic pain interferes with life physically and emotionally. Not only is pain depressing; it causes one to become agitated affecting concentration, memory, and being civil to people.

 
I tried medical marijuana before, and it definitely takes the edge off the pain for me. I’m not a regular user; I use it when all else fails. The way I see it, I’d rather take a few puffs of a joint than take a boatload of pain killers or alcohol.

 
Personally, I don’t care if it is illegal. The voters here in Arizona said “Yes!” to medical marijuana at the last election. But the state is fighting the path to go forward with it because it is illegal at the federal level. And the haggling will go on and on because government really doesn’t want to legalize it. But they will turn the cheek the other way to the dangers of texting or using cell phones while driving in this state. Or do nothing about the abuse of prescriptions for narcotics by doctors. How stupid is that?

 
So I have joined the underground. There are ways to get it and hide it. I have shed my good-girl image and doing what I have to do. If the cops want to arrest me over a joint, then that’s a chance I will take. But they have to catch me first and I am pretty clever.
I’m getting relief in the privacy of my home and not bothering anybody.

It’s my body and it’s my choice.


www.DebbieMS.com

MS Treatments

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“What to Take–What to Do?”

August 6, 2012

There is no cure for MS. But there are options available to treat the symptoms, relapses and the course of the disease.

To keep things simplified, there are three groups of treatments, all with a different purpose: Medications, Corticosteroids, and Disease Modifying Agents.

Medications

These are used to treat the symptoms of MS, and the use can be short or long term. They minimize the intensity or effect of symptoms so the quality of life and daily function is more manageable. Examples include antidepressants for depression, baclofen for spasticity, Ditropan for incontinence and so forth.

Corticosteroids

Corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). The administration of these drugs is high dosage over a short term (3 days to several weeks).

Disease-Modifying Agents (DMA’s)

Disease-modifying agents (also known as DMD’s—disease-modifying drugs) reduce the progression and activity of the disease. The FDA has approved ten of them now, and much research is occurring to continue to find more. Most of them are for folks who have the relapsing-remitting form of MS, or for those who have secondary progressive disease who continue to have relapses. They are given regularly mostly by injection over the long-term.

Most people with MS have used drugs in at least two of these categories. Some work for some people and some don’t work at all for others. If a drug is tried and doesn’t work, then something else can be tried. Every persons responds to drugs differently.

Medications and Corticosteroids have been tried and used for decades. Disease-Modifying Agents started becoming available in the nineties. Today, as I participate in online discussions and forms, it seems that almost everyone with MS is on one of these. Patients are strongly advised to get on one as soon as possible by neurologists, and the MS Society.

But taking DMA’s is a difficult regime. There are side effects, require much monitoring (doctor visits, MRI’s, clinic visits…), and they are expensive. While some folks get financial assistance through the drug companies, being a clinical trial participant, etc. many others pay thousands of dollars annually out-of-pocket.

And then the recent news comes on July 17th that a “Study Suggests That Interferons Did Not Reduce MS Progression”.

WOW! Can this be true? After all those years of injections, tests, office visits, side effects, dollars spent…. Now what? And what should a newly-diagnosed person do now about starting interferons?

I have had MS for 32 years and never took a DMA for various reasons. That is my personal decision. Throughout the years I have taken medications and steroids to help me with both symptoms and relapses. However, I would never tell any one not to take them. That is their personal decision.

So, what should one do about the recent news about interferons?

Whenever I have considered any medication over the years I followed these steps and offer them to you for your own consideration:

1.) Make sure you research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc.

2.) If you are on a drug, are the benefits outweighing the risks?

3.) There is no magic pill or injection to make MS go away. There are many other things someone can do to manage MS effectively to complement any drugs you are taking. This includes health and wellness (exercise, sleep, stress management…) and alternative therapies (massage, yoga, pilates…)

4.) Doctors aren’t always right. Persons with MS know their bodies best and should have the final say.

Take your time with making a decision. A delay of several weeks or months will make little difference in the overall course of your MS.

It’s common sense, your body and your decision.

www.DebbieMS.com