#aubagio

[phonemantra-blog]

Aubagio: A Breakthrough in Multiple Sclerosis Treatment Multiple sclerosis (MS) is a complex neurological condition that affects millions of people worldwide. For years, finding effective treatments for MS has been a medical challenge. However, recent advancements have led to breakthroughs, and one such breakthrough is Aubagio. In this article, we will explore Aubagio's role in transforming the management of multiple sclerosis, its mechanisms of action, and the benefits it offers to patients. What is Aubagio? Aubagio, also known by its generic name Teriflunomide, is an oral medication approved by the FDA for the treatment of relapsing forms of multiple sclerosis. It falls under the category of disease-modifying therapies (DMTs), specifically designed to slow down the progression of MS and reduce the frequency of relapses. [caption id="attachment_53905" align="aligncenter" width="1400"] aubagio[/caption] How Does Aubagio Work? Understanding how Aubagio works is essential to appreciate its impact on multiple sclerosis. Aubagio's active ingredient, Teriflunomide, targets the immune system, which plays a pivotal role in the development and progression of MS. Teriflunomide works by inhibiting specific immune cells called lymphocytes, particularly T-lymphocytes. These immune cells are known to attack the central nervous system in individuals with MS, leading to inflammation and damage to nerve fibers. Benefits of Aubagio Aubagio has garnered attention within the medical community and among MS patients for several compelling reasons:  Efficacy in Reducing Relapses One of the primary goals of MS treatment is to reduce the frequency and severity of relapses. Aubagio has demonstrated its effectiveness in achieving this goal. Clinical trials have shown that patients taking Aubagio experienced a significant decrease in relapse rates compared to those on a placebo.  Slowing Disease Progression Slowing down the progression of MS is crucial to preserving a patient's quality of life. Aubagio has shown promise in this regard as well. By modulating the immune response and reducing inflammation, it helps protect nerve fibers from further damage.  Oral Administration Aubagio stands out as an oral medication in the realm of MS treatments. Unlike injectable therapies, which some patients may find challenging, Aubagio is taken orally in tablet form. This convenience can lead to better adherence to the prescribed treatment plan.  Favorable Side Effect Profile While all medications carry potential side effects, Aubagio is known for its relatively mild side effect profile. Common side effects may include mild hair thinning, diarrhea, or elevated liver enzymes. These effects are usually manageable and tend to subside with continued use.  Long-Term Safety Aubagio's safety and tolerability have been studied extensively over the years. Long-term studies have shown that it maintains its efficacy and safety even with prolonged use, providing patients with a reliable treatment option. Side Effects and Precautions While Aubagio offers significant benefits in managing multiple sclerosis, it's essential to be aware of potential side effects and take necessary precautions when using this medication. Potential Side Effects Mild Hair Thinning: Some individuals may experience mild hair thinning while taking Aubagio. This side effect is usually temporary and reversible upon discontinuation of the medication. Diarrhea: Diarrhea is a common side effect of Aubagio. It is advisable to stay hydrated and consult your healthcare provider if diarrhea becomes severe or persistent. Elevated Liver Enzymes: Periodic monitoring of liver function is recommended while on Aubagio. Elevated liver enzymes may occur in some cases, but they are typically reversible upon dose adjustment or discontinuation. Infections: Aubagio may increase the risk of certain infections. It's crucial to promptly report any signs of infection, such as fever or persistent sore throat, to your healthcare provider. Precautions To ensure safe and effective use of Aubagio, consider the following precautions: Regular Monitoring: Follow your healthcare provider's recommendations for routine monitoring of your overall health, including liver function tests and blood cell counts. Pregnancy and Contraception: Aubagio may cause birth defects if used during pregnancy. If you are of childbearing age, discuss effective contraception methods with your healthcare provider. Vaccinations: Keep up-to-date with recommended vaccinations before starting Aubagio, as some vaccines may need to be administered before treatment. Interactions: Inform your healthcare provider about all the medications and supplements you are taking to check for potential interactions with Aubagio. Aubagio vs. Other MS Treatments When it comes to managing multiple sclerosis, patients have several treatment options available. Understanding how Aubagio compares to other treatments can help individuals make informed decisions about their healthcare. Aubagio vs. Injectable Therapies Traditionally, injectable therapies like interferon beta and glatiramer acetate have been common choices for MS treatment. While effective, some patients may find the idea of injections less appealing. Aubagio offers a convenient alternative as an oral medication, potentially improving adherence for those who prefer not to self-administer injections. Aubagio vs. Infusion Therapies Infusion therapies, such as natalizumab and ocrelizumab, involve administering medication intravenously in a clinical setting. While these treatments can be highly effective, they require regular visits to a healthcare facility. Aubagio, on the other hand, allows for self-administration at home, offering greater flexibility for patients. Aubagio vs. Siponimod Siponimod is another oral medication approved for relapsing forms of MS. Both Aubagio and Siponimod work by modulating the immune system, but they have different mechanisms of action. Your healthcare provider can help determine which of these medications may be more suitable based on your specific health needs. Future Developments and Research The field of multiple sclerosis treatment is continually evolving, with ongoing research aimed at enhancing the effectiveness and accessibility of therapies like Aubagio. Here are some key areas of focus for future developments:  Novel Therapies Researchers are exploring novel treatment approaches that target different aspects of MS, such as neuroprotection and myelin repair. These therapies aim to complement existing treatments like Aubagio and further improve outcomes for patients.  Personalized Medicine Advancements in genetic research are paving the way for personalized medicine in MS treatment. Tailoring treatments to an individual's genetic makeup may lead to more precise and effective therapies.  Digital Health Solutions Digital health tools, including mobile apps and wearable devices, are being developed to help patients monitor their MS symptoms and medication adherence more effectively. These technologies aim to empower patients to manage their condition.  Expanded Access Efforts are underway to improve access to MS treatments, ensuring that more individuals can benefit from medications like Aubagio. This includes addressing affordability and healthcare disparities.  Clinical Trials Participation in clinical trials is essential for evaluating new MS treatments. Patients interested in contributing to research and accessing potentially groundbreaking therapies should consider involvement in clinical trials. Frequently Asked Questions (FAQs) About Buerger's Disease 1. What is Buerger's disease? Buerger's disease, also known as thromboangiitis obliterans, is a rare and serious condition that affects blood vessels in the arms and legs. It causes inflammation, blood clot formation, and blockages in these vessels, leading to reduced blood flow. 2. What are the common symptoms of Buerger's disease? The typical symptoms include pain and numbness in the affected limbs, cold extremities, skin discoloration, and the development of painful sores or ulcers on the fingers and toes. 3. Who is at risk of developing Buerger's disease? Buerger's disease is strongly associated with tobacco use, particularly smoking. Individuals who smoke or use tobacco products are at a significantly higher risk of developing this condition. It is rare in non-smokers. 4. How is Buerger's disease diagnosed? Diagnosis often involves a physical examination, medical history review, and imaging tests like angiography. Doctors may also perform blood tests and vascular studies to assess blood flow. 5. Can Buerger's disease be cured? The most effective treatment for Buerger's disease is complete tobacco cessation. If a patient continues to use tobacco, the disease typically progresses. Smoking cessation programs and support are essential for managing the condition. 6. What treatments are available for Buerger's disease? Aside from quitting smoking, treatments may include medications to alleviate symptoms, wound care for ulcers, and in some cases, surgery to remove damaged blood vessels or improve blood flow. 7. Is Buerger's disease linked to other health conditions? Buerger's disease is primarily associated with smoking. It is not directly linked to other common vascular conditions like atherosclerosis. However, patients with Buerger's disease should be monitored for other cardiovascular risk factors. 8. Can Buerger's disease lead to amputations? In severe cases where blood flow to the limbs is severely compromised, amputation may become necessary. This underscores the importance of early diagnosis and smoking cessation. 9. Is Buerger's disease a common condition? Buerger's disease is relatively rare in comparison to other vascular diseases. Its prevalence is higher in regions where smoking or tobacco use is widespread. 10. Can Buerger's disease recur after quitting smoking? In some cases, Buerger's disease can recur if a patient resumes smoking or tobacco use. Continued abstinence from tobacco is crucial to prevent disease recurrence. Conclusion In the world of multiple sclerosis treatment, Aubagio shines as a beacon of hope for patients seeking effective, convenient, and well-tolerated options. Its ability to reduce relapses, slow disease progression, and offer a preferable oral administration method has made it a compelling choice for many individuals living with MS.

[sevans4]

I go get my Ocrevous infusion today. It takes about five hours. I will be good for another six months after this and it doesn’t have liver issues like Aubagio did.

[kenresearch2023]

GSK vs Sanofi - A Battle for Medical Breakthroughs and Global Healthcare Dominance: Ken Research

Global Pharmaceutical leaders GSK and Sanofi competing for market share in vaccines, general healthcare with investments in R&D and new collaborations.

Storyline

Sanofi, a global pharmaceutical company, has a strong market presence in therapeutic areas like diabetes, cardiovascular diseases, and vaccines. Sanofi Pasteur, its vaccines division, is a leading manufacturer worldwide.

GSK, a British multinational, excels in respiratory health, HIV, vaccines, and consumer healthcare. GSK Vaccines is renowned for its vaccine offerings.

Both companies heavily invest in R&D to innovate and develop new drugs and vaccines. Sanofi emphasizes partnerships, while GSK focuses on genetically identified and infectious disease targets.

Strategic collaborations drive their growth strategies. Sanofi partners with Regeneron Pharmaceuticals and has a premium partnership for the Paris 2024 Olympic and Paralympic Games. GSK collaborates with organizations like the University of California and IDEAYA in areas like oncology.

Introduction

Sanofi and GSK are both global pharmaceutical companies engaged in the research, development, manufacturing, and marketing of a wide range of pharmaceutical products, including prescription medicines, vaccines, and consumer healthcare products.

1. Revenue and Market Presence:

Sanofi:

Sanofi is a French multinational pharmaceutical company with a significant global presence. It has a diverse portfolio of products across various therapeutic areas, including diabetes, cardiovascular diseases, vaccines, and rare diseases. Sanofi is one of the top pharmaceutical companies worldwide. It is headquartered in Paris, France. In 2022, influenza vaccines generated approximately three billion euros of revenue.

GSK:

GlaxoSmithKline, a British multinational pharmaceutical company, is also a major player in the global pharmaceutical industry. It operates in various segments such as pharmaceuticals, vaccines, and consumer healthcare. GSK has a strong presence in areas like respiratory health, HIV, vaccines, and consumer healthcare products.

Product Portfolio:

Sanofi:

Sanofi's product portfolio includes branded prescription drugs such as Lantus (insulin), Dupixent (for atopic dermatitis and asthma), and Aubagio (for multiple sclerosis). Sanofi also has a significant presence in the vaccine market, including vaccines for influenza, meningococcal diseases, and paediatric diseases.

GSK:

GSK's product portfolio encompasses prescription medicines like Advair (for respiratory diseases), Augmentin (antibiotic), and Tivicay (for HIV). GSK has a strong focus on vaccines, including those for hepatitis, shingles, and influenza. Additionally, it offers a wide range of consumer healthcare products, including Sensodyne, Panadol, and Voltaren.

Vaccine Market:

Both Sanofi and GSK have notable expertise and market presence in the vaccine segment. However, their focus and capabilities may vary.

Sanofi

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Sanofi is known for its vaccines division, Sanofi Pasteur, which develops vaccines for various diseases, including influenza, dengue, polio, and meningitis. Sanofi Pasteur is one of the largest vaccine manufacturers globally.

GSK

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GSK has a substantial presence in vaccines as well. It produces vaccines for diseases such as hepatitis, shingles, rotavirus, and meningitis. GSK's vaccine division is called GSK Vaccines.

Research and Development (R&D):

Both Sanofi and GSK invest significantly in research and development activities to discover and develop new drugs and vaccines.

Sanofi

https://www.researchnewstoday.com/wp-content/uploads/2023/07/Clinical-Trials-in-Vietnam.png

Sanofi has multiple R&D centres globally, focusing on various therapeutic areas. It emphasizes partnerships and collaborations to enhance its R&D efforts. “We’ve identified conditions in immunology and inflammation as areas of great opportunity. The challenge of developing new treatments for conditions such as atopic dermatitis and asthma is just one of the many in which we believe AI can offer game-changing aid." said Generous-Marlin.

GSK

In 2022, GSK invested £5.5 Bn in R&D – 9% AER more than 2021 - to enhance GSK’s pipeline of vaccines and medicines and help us get ahead of disease together. GSK scientists prioritise genetically identified targets that are at least twice as likely to succeed in the clinic.  They also prioritise infectious disease targets and immune-modulators that have greater lifecycle opportunities.

Strategic Collaborations and Partnerships:

Both companies actively pursue strategic collaborations with other pharmaceutical firms, research institutions, and biotech companies to strengthen their pipelines and access new technologies. Sanofi has entered into various collaborations, such as its partnership with Regeneron Pharmaceuticals for the development of biologics, including Dupixent.

Sanofi announces Paris 2024 Premium partnership for the Olympic and Paralympic Games in Paris.

"Sanofi is proud to contribute to the success of the Olympic and Paralympic Games Paris 2024. It represents a great opportunity to unite our employees around shared values with the Olympics and Paralympics, such as inclusion and diversity, openness to the world, courage, determination and excellence." Says Paul Hudson, Sanofi CEO. GSK has formed partnerships with multiple organizations, including the University of California, to explore novel therapies and approaches in areas like oncology and immunology.

IDEAYA and GSK Announce a Broad Partnership in Synthetic Lethality, an Emerging Field in Precision Medicine Oncology

It's important to note that the competitive landscape in the pharmaceutical industry can be dynamic, with mergers, acquisitions, and new product launches shaping the market.

According to Ken Research: Sanofi and GSK compete in various therapeutic areas, with diverse product portfolios and a focus on vaccines. They invest in R&D and form strategic collaborations to drive innovation. The dynamic nature of the pharmaceutical industry, characterized by mergers, acquisitions, and product launches, shapes their competitive landscape.

[multiple-sclerosis-personal]

wow. it had been 5 years without any new symptoms at all.

now, this september, i had 2 relapses, close to each other.

the first one - again, the first one after FIVE years! - coincidenced right with me moving into a new shared flat. both my psychiatrist and my neurologist thought it was bc of the stress caused by that. - but the mri showed several inflammation spots.

i was put on cortisone (500mg for 5 days), and let me tell you it was hell.

cortisone fucks you up so badly. i couldn‘t focus on anything at all, i didn’t read a single line in a book.

anyway. we decided to switch meds, from this pill called ‚aubagio‘ to an infusion that‘s done once every 6 months. i forget the name. ocrebus or sth?

then the second relapse came a few weeks later, probably right in the spot where the old medication didn’t work anymore and the new one hadn’t started working yet.

i was in italy on holidays with my parents at the time. and actually it was pretty nice to be on holiday for that time. i got up, brunched in the hotel, went to the beach, had lunch in a cafe there, dinner at a restaurant with my parents in the evening.. it was quite nice.

hilariously funny: in italy, the largest dosis of cortisone tablets they have is 25 mg. so i had to swallow…. twenty tablets each morning. lmao.

anyway, symptoms have largely subsided from both relapses, and life is good again.

(1st relapse had my left leg tingling and even more so when i bowed my head down. it also had my face numb or feeling weird, and i was incredibly dizzy all the time and felt very weak. 2nd relapse had my right hand tingling, then my forearm and upper arm. also the right backside of my head felt different- numb, probably- when i put it down on the pillow.)

oh and surprising good side effect: all that cortisone had an incredible effect on my migraines, i didn’t have one for several weeks, and didn’t need to take pain meds during that time either. i usually have to take pain meds pretty often usually, as i have chronic migraine. so that was nice! now my pain patterns are (sadly) approaching their „normal“ level again.

but it was nice while it lasted!

[dailyms]

[chronisch-chaotisch]

Heute fange ich mit der Aubagio Therapie gegen meine MS an. Auch, wenn ich etwas aufgeregt bin, wie und ob es wirklich wirkt, bin ich mehr optimistisch, als skeptisch. Es wird mir helfen und selbst wenn nicht, werden neue Dinge versucht! Es wird gekämpft!

[meisjesvanmooi]

Bijwerkingen Aubagio? #ms

In mijn vorige bericht heb ik er al over geschreven; mijn vriendin heeft de laatste weken veel last van haar gezondheid. Verkouden, koorts, hoofdpijn, keelpijn etc. En ook vermoeid. Het kan komen door Aubagio. Het medicijn zorgt voor bijwerkingen en een verminderd immuunsysteem hoort bij die lijst van bijwerkingen. Maar MS is sowieso een chronische ziekte met een verminderd immuunsysteem. Dat zou…

[monatbeforeandafters-blog]

Tag or share to help others who may be going through something similar. "This is my sister's incredible results after a little over 1 year, and three haircuts later. Then over 2 years on Monat only:) She is still taking the med #aubagio that made her hair fall out before. ▫️ She had always had #thickhair until her most recent MS (#multiplesclerosis) #medications were making it rapidly fall out by the handfuls! She started with the #ClassicConfidence system and the #RevitalizeConditioner. She added the #RejuveniqeOil a couple months in, and now alternates between the monat #Black2in1 and the #IntenseRepairShampoo. She also added the #IntenseRepairConditioner and is loving that too! We both are BEYOND thankful for #Monat ❤" #monatbeforeandafter

[jsanruibal]

Resumen de los tratamientos farmacológicos actuales en la esclerosis múltiple.

TRATAMIENTO FARMACOLÓGICO DE LA EM A pesar de que a día de hoy no existe una cura definitiva para la Esclerosis Múltiple, en los últimos años ha habido un cambio sustancial en el tratamiento y en el manejo de la enfermedad, gracias a la aparición de nuevos fármacos que modifican su curso. En la actualidad, son trece los tratamientos farmacológicos en el mercado que modifican el curso de la…

[rheasunshine]

I woke up this morning with a pulse of 125.  This is an uncomfortable anomaly.  This is the steroids saying “Good Morning”.

Two nights in the last week, Thommy and I have sat in bed, with the Omron 7 Series Upper Arm Blood Pressure Monitor between us, and stared at the reading – “78/45, Pulse 52” – and we played one of our favorite games: ‘911 or nah?’

We play this game often.  We’re getting better all the time.  About a week before I was diagnosed with POTS, I passed out in the shower.  This was my first tip-off that something was probably seriously wrong.  After 15 minutes of “discussion”, it was decided I would go to work anyway.  (READ: After lots of exasperated threatening and ultimatums, *I* did what I always do, which is to just do what *I* want to do, because moving forward no matter what was the only way I knew to keep propelling my life forward, knowing deep down that as soon as I gave in to some of these things, I would have to give up everything.)

Then, about a week later it happened again.  Ok, this time I’ll go, I said.  But no 911, we can drive, ok?

But first I need to shave my legs.

I can’t imagine one person reading this, save Thommy, will understand this AT ALL.  But I’ve been to the ER so many times, that I knew if they admitted me, it might be days before I could shave, and the only thing worse than those hospital gowns and socks, is feeling your own prickly, sharp legs hitting each other while you shift endlessly trying to find a comfortable position.  You’re in so much pain.  You are so helpless and there are times when you barely feel human; having the continually growing hair poking me reminds me, in those moments, that I am at once alive but unable to do anything with, or about, that aliveness.  It’s a bizarre mile-marker, and I don’t expect anyone to understand, but unless I am bleeding out on the floor from a severed artery, Thommy knows that I’m going to ask for time to shave and then brush my teeth.  If you can’t be stubborn in the face of ER visits (which have brought literally life-changing diagnoses for me, no less than 3 times) than you aren’t going to be able to handle life when you leave.

And furthermore, I knew, because us hospital-dwellers know this, that if something was wrong with my heart, there was a good possibly my body might start to swell; and if you are a patient prone to swelling, doctors check your ankles to monitor this swelling.  I can withstand any number of awkward, uncomfortable, humiliating, pride-diminishing moments at the hospital – but I draw the line at having to suffer my own stubbly legs, and the unconscious and uncontrollable flinch that will occur every time a doctor, nurse, or aide (or loving husband looking to provide reassurance) tries to touch my unshaven calf. No.  I’m not doing it.

It’s a secret language I’m speaking, I suppose, with no currently available interpreter.  I accept that this seems preposterous and unimportant to most anyone reading.

So anyway, I shaved.  And we went.  And I was diagnosed with POTS.  And I couldn’t stand up without blacking out.  Fuck, sometimes it even happened sitting down.  And so I went out on a short-term disability, which led to a long-term one, which led to a permanent one.  That was the last time I would work.  I haven’t worked since 2015.  And I am losing my mind.

Literally.  This is not just a meme.  This is not temporary.  This is my everyday reality.

  In the past 12 months, I have endured the electrifying anxiety that comes from researching, deciding-on, starting (and then ultimately stopping) three MS medications.  THREE.  In one year.  First, I tried a monthly infusion called Tysabri, but then quickly developed something called the John Cunningham Virus (JCV).  In people with suppressed immune systems, this can (and does) lead to something called Progressive Multifocal Leukoencephalopathy, or PML.  People can (and do) die from this.  So MS patients receiving Tysabri are monitored every 3 months or so for their levels; it usually takes about two YEARS of monthly infusions before patients become JCV positive.  I became wildly infected (like, an exaggerated titre level, laughable, almost), after only two infusions.  After all the trepidation and suspension of “worst-case-scenario” imaginings, my body only lasted two months.

FUCK.

Then, despite my strong hesitation and vocalized resistance, my local MS neurologist switched me to Aubagio which is a pill you take daily.  Since I don’t have a large intestine, and food, liquids and pills all fly out of me at warp-speed (you’re welcome), causing any number of malabsorption issues, I didn’t think this was a good idea.  Plus it can cause nausea, headaches, cramps, diarrhea, vomiting… if those sound familiar to you it may be because you’ve heard me complain on a fairly regular basis of having all of those symptoms anyway.  It also causes your hair to fall out.

But OK, at this point, I felt like the MS was winning, so I agreed to start it.  I made an appointment at my salon and cut off most of my hair thinking I could game the system. There – take that vanity.  Let’s do this. (I cried when I got home, and then again the next day.)

The month I was on Aubagio was a nightmare hellscape.  Imagine a 24 hour flu that also causes you to suffer periodic amnesia and not know what day, time or month it is.  I wouldn’t leave my bed for 3-4 day stretches.  If the hair had miraculously stopped growing on my legs, I don’t know that I would have showered that entire month.  I have Cottenelle wet wipes, I thought. I have dry shampoo!  Fuck standing, just leave me to here to waste away.  Then all of a sudden, as I tried in vain to find a comfortable resting position, one leg would hit the other and I would snap back to reality, cringe at the unbearableness of my own body, and shower.  Then I would, quite literally, collapse back into bed for 3-4 more days.

By the time we got to Duke and my new neurologist, about 35 days after starting Aubagio, I was ready to give up on everything and just ask for my name to be placed on some kind of Stem Cell Transplant waiting list, or start chemo, or do whatever he wanted me to do as long as it didn’t involve swallowing one more pill.  When he said I could quit Aubagio, it felt like a stay of execution.  I left this appointment with a “pick your poison” bouquet of stat sheets on 3 different infusions I could try.  All, obviously, with very serious side effects, including Jackpot Winners like kidney failure, hepatitis, cirrhosis, thyroid disease, melanoma and breast cancer.

I choose the one more likely to cause breast cancer.

I did a detox to rid myself of the Aubagio and that was even worse than the previous month.  Despite the bottom rising up to meet me, I experienced one of the rarest things I had in 2 years: a night of energy, joy and no pain.  Thommy and I went to a lighthouse on Oak Island, and to Caswell Beach. It was everything:

And finally, on August 14th, we started the journey of Ocrevus and Infusion #1.  We left the house at 6:30 am, and got back home around 9pm.  The 100mg of IV Bendadryl, plus the allergic reaction, have made the details of the day just a sketch; another day in this nightmare that I wish I could say started in 2009 with my MS diagnosis.  But really, it started when I was maybe 2 months old when I first started displaying symptoms of Hirschprung Disease.  So I can safely say this is all I know and nothing I ever hoped for, obviously; it is barely something I can still imagine is happening, even as it’s happening.  I don’t want it anymore.  And the crazy part is – I was the lucky one that day.  The hours passed by in blinks, and even though I was the one who had to get stuck 3 times as they tried to find a spot for the IV, and even though it was me pumped full of steroids and a bag with a toxic sticker on it, Thommy was the one that sat in a bullshit-excuse of a chair for that ENTIRE time.  No drugs.  No warm blanket.  Fuck it babe, I don’t want it for your anymore either.

But more than all of that lately, I can’t stop thinking of the rapidly expanding schism between me and every person I know and love.  This is obviously, obviously, not their fault nor their problem.  What it is, what it’s always been, is this race that I’m running to try to keep up with LIFE (my life, their lives, our lives) while existing almost entirely in an isolated dimension of a life suspended.  There is no mooring to tie myself to, nothing to define myself other than symptoms, disease management, medications, side-effects…

How do you speak that language and still talk to people.  If it wasn’t something I was actively experiencing every minute, of every day, I’m sure there would be a way, because  I’m constantly screaming to myself, “YOU ARE MORE THAN YOUR DISEASE(S).”

Well, I know that.  Truly, I do.  But that’s also kind of a lie I like to tell myself.  Because at any given moment, whether I’m sitting in a cloud of confusion that makes my brain feel like it’s on fire as it tries to decipher what the person I’m talking to is saying to me, or whether I’m focusing on various focal points to keep myself oriented as I stand so that the vertigo doesn’t overcome me, or stuffing down the near-constant sensation of dry-heaving so that I don’t throw up in public, or willing myself, literally conjuring all the cells in my body to communicate with each other so that I can stand for 5 minutes while I talk to someone I’ve stumbled across in public, I am actually these diseases.  It vibrates through my body like a tuning-fork and it never, ever stops.  It is a body electric, and it never shuts off.

Despite what people may see when they look at me, I do not ever feel like a body of blood and muscle and bone.  Nothing in me pumps, flexes or supports.  I am more Jell-O than I am human (or just plain gelatin, depending on my hydration level).

And so when I talk to people, or when I try, to there is this voice somewhere inside that ricochets as I try to swat it away; it’s constantly asking “could this person you’re speaking to be you… could they live like this?” …

I try to make it stop but it’s constantly growing louder.  Could this person, this physical specimen in front of me, with undoubtedly all their own problems and diseases and anxieties and sorrows and pains, could they lose their job tomorrow and turn into a human shaped heap of Jell-O and still get up everyday to a life shattered down around them? And could they pick up those pieces and build a new life?  Can they even comprehend what you’re wondering?  And when I get to my penultimate question, my heart skips one of its tiny, faint beats: Have they ever had to do it before???

Because in that moment, my brain and my heart, that are always asking and searching, wonder one last thing:

Can they show me how?

***

(Note: as I typed this in a haze of frustration and fear, I’ve been watching MSNBC and it’s coverage of Hurricane Harvey and the potential devastation about to befall parts Texas.  I think back to Katrina and how so many people looking to escape it’s path were evacuated to Houston, which is now staring down the barrel of another gun.  And I think of Yemen (if you don’t know about one of the worst humanitarian crises ever that is decimating that country, you should educate yourself and then do whatever it is you do in the face of such suffering, whether it’s monetary or verbal communication between you and your god).  And I think of Heather Heyer’s family.  And I know, as I’ve always known and always said, that suffering is happening on scales NONE of us reading can understand; just as I can’t understand evacuating my home under the threat of 30 inches of rain to possibly never return, or losing a child to cholera, or having a daughter killed by a Nazi.  I know an untold number of us are forced at least once in our life to lose everything and build it back up anew.  And again I ask, HOW?  I really need to know.)

      Can Anyone Hear This? I woke up this morning with a pulse of 125.  This is an uncomfortable anomaly.  This is the steroids saying "Good Morning".

[pknoepfl]

Burt Northwestern Stem Cell MS Trial Part 3: Funding, Patient Perspectives, & the Future

Burt Northwestern Stem Cell MS Trial Part 3: Funding, Patient Perspectives, & the Future

Today’s post is the last of a three-part series on the Burt stem cell trials at Northwestern. This piece is focused on funding and the future of the trial, and also includes perspectives from patients.

You can read Part 1 here and Part 2 here, which focused on issues related to potential encouragement of patient fundraising that unintentionally releases private information and on concerns over…

[lucadezzani]

Best Pharmaceutical Companies at a Glance: Sanofi

Best Pharmaceutical Companies at a Glance: Sanofi

Sanofi is a French life science company involved in research, development, manufacture and marketing of therapeutic solutions. https://videopress.com/embed/cDjSvaZJ?hd=0&autoPlay=0&permalink=0&loop=0

  The company develops prevention to treatment-based products in human vaccines, rare diseases, multiple sclerosis, oncology, immunology, infectious diseases, diabetes and cardiovascular solutions…

[tahere-ravenwick]

Ignorance+Arrogance= Worst Doctor I've EVER Met!

WARNING LONG POST/RANT

I had an early morning doctors appointment today, I was seeing a new doc since my regular one was away at the moment and I need some scripts for the Christmas holidays, and trying to get anything during Christmas is a pain in the ass! So yeah new guy, new to the clinic, apparently well liked by everyone who has seen him so far ...

Instant indicator for me that I'm not going to like this guy(I thought he was just going to be one of those falsely nice overly friendly types)

Nope, he's a new age, anti-medication douchebag!

I have never hated a doctor in my life, but i can honestly say that I loathe this bastard with the passion of a thousand dying suns!

Originally went in and did the usual when you meet a new doc, "Oh Hi, I have MS just in for some scripts."

First off he didn't ask about what kind of MS (Balos and Remitting Recurring MS currently) Important be cause he had no fucking idea. Pretty sure her didn't even reat my file.

Second immediately after looking at my medication list said he was not giving me scripts for any of it. Started lecturing me about how I shouldn't be taking any of it, he thought that I shouldn't be on my main medication and to take something that will do the exact opposite of what they are doing currently, he also went on about how he didn't believe in prescribing pain medication*.

The former was of course referring to my immunosuppressive medication Aubagio and wanting to instead give me some Immuno-Boosting "organic" medication instead.

For my MS.

An autoimmune disorder that causes my immune system to attack my brain..

He wanted to make that more active....

And Finally he said my other doctors and specialists didn't know what they were doing, and went on about the power of positive thinking and mind over body.

I have seen the best neurospecialists in my country**, I have had my medical reports sent overseas to some of the best neuro specialists in the world**. My medications that I'm currently on are a result of their combined efforts to keep me alive, and this arrogant, small time general practitioner*** piss stain thought himself more capable, more educated, more brilliant than some of the most brilliant, educated and capable minds in the world!

So I decided to explain exactly what my types of MS are doing and some of what I've been through up to that point. I told him that my balos is an incredibly rare autoimmune disorder that there is less than 70 people world wide who have ever been diagnosed with this condition, I told him about the golf ball sized hole in my brain caused by the balos and that my medication is currently the only thing keeping it from getting bigger and killing me. I told him that I probably wouldn't be alive currently if I wasn't on the medication that I was on and that changing it would very likely kill me.

I didn't tell him about the random jolts of pain caused by the permanent scarring from the balos.

I didn't tell him about how I had to relearn how to use my left arm after having massive seizures around my 18th birthday.

I didn't tell him that i had gone temporarily blind in my right eye for a year.

I shouldn't have to smack him in the face with my binder of medical history! Its literally on my file. If he was too lazy to read it, thats FINE, at least ask fucking questions before trying to over haul my medications and potentially kill me!

If I weren't as informed about my condition, about what I'm taking, if I hadn't done hours of reading and learning about whats going on, I probably would have listened to him, I would have listened because he's a doctor. I probably would have listened to him and changed my meds and I most likely would have DIED!

And that scares me because these bastards are everywhere and there are people who don't know all that much about their ailments or their medication or who don't see specialists, or who don't understand fully what their specialists tell them, they may have been too young or too old to understand fully when they were diagnosed and they listen to these anti-medication, anti-prescription, internet trend following assholes and they Die.

They die needless deaths and I just can't .

I just can't believe people can be so ignorant when you have someones life in your hands.

I can't understand how they can be so arrogant that they disregard years of studies to push their own opinion onto their patients.

I can't find the words to express my sorrow for the people and their families affected by others blind arrogance and selfish ignorance.

**=*= for notes in the post =*=**

*Lyrica and endone for chronic pain from my MS and permanent scarring from a massive brain hemorrhage when I was 18.

** My condition is incredibly rare, most of my doctors were practically salivating over the medical results. Last I checked there was less than 70(68 maybe 65? I think) people worldwide with this condition, that may have changed.

***I mean no offence to General Practition Doctors. I have had some absolutely fantastic GPs in my life, if it weren't for my current and go to GP I probably wouldn't be alive. I was just emphasizing that he was in no way a specialist in any feild particularly the feild of MS.

[teachingrounds]

Drugs that can be used to treat Multiple Sclerosis (MS), Part 2 of 3: Oral Disease-Modifying Agents (DMAs)

Dimethyl fumarate (Tecfidera)--DMF and its active metabolite, monomethyl fumarate (MMF), activate a cellular response pathway that responds to oxidative stress. Comes in 120 mg and 240 mg delayed-release capsules. Maintenance dose is 240 mg BID. Taken with food and/or aspirin to reduce flushing. May also cause GI upset and leukopenia/infection. There has been one case of fatal progressive multifocal leukoencephalopathy (PML) secondary to prolonged severe lymphopenia in Canada.

Fingolimod (Gilenya)--Sphingosine 1-Phosphate (S1P) Receptor Modulator that blocks WBCs' ability to leave lymph nodes, thereby decreased CNS inflammation. Dosage is 0.5 mg daily. May increase AST/ALT, especially in patients with hepatic impairment. Contraindicated in patients with most cardiac pathologies and/or CVA/TIA because it can cause HTN, AV block, bradycardia, and/or QT prolongation. There has been one reported case of (non-fatal) PML following the administration of Gilenya to a patient who had not previously received Tysabri (natalizumab), an MS drug associated with a higher risk of PML. Follow CBC, LFTs, EKG, ophthalmologic exam, VZV antibodies, and PFTs as indicated.

Teriflunomide (Aubagio)--A pyrimidine synthesis inhibitor that has antiproliferative and anti-inflammatory effects and may reduce the number of activated lymphocytes in the CNS. It is given 7 mg or 14 mg PO daily. It has the potential for significant hepatotoxicity, so monitor LFTs. It is teratogenic. May cause alopecia.

[griddlebandits]

Cautiously optimistic

https://multiplesclerosis.net/living-with-ms/differences-after-ten-year-mark/?utm_source=facebook.com&utm_medium=promoted&utm_campaign=Aubagio-CAS&utm_confid=soviec04u

This article came through on my Facebook feed yesterday and I found it interesting because this week marks 10 years since my MS diagnosis. I may be off a little on the date but I’m almost certain it was early October. It was a…

[lasclerosimultiplainme]

Quali sono le cure?

La cura alla sclerosi multipla non esiste ancora. Dico ancora perché credo nella scienza e nel suo progresso. Per il momento, le medicine che favoriscono una sospensione della malattia sono:

1. Avonex, Rebif

2. Aubagio

3. Betaferon, Extavia

4. Mavenclad

5. Copaxone, Copaxone 40, Copemyl, Copemyltri

6. Gylenia

7. Lemtrada

8. Novantrone

9. Ocrevus

10. Plegridy

11. Tecifidera

12. Tysabri

Qual è il farmaco che assumete al momento? Ne avete assunti altri?