Comparing my neuros

[sarabeach123]

I regret not being on Tysabri from the beginning. Although I continue to remind myself how lucky I am with minimal symptoms, I have numbness that will never go away. Who knows if it would have still happened if I was on Tysabri, but I do know that I had progression both on my MRI and a flare up while on Tecfidera, and now had several MRIs with no progression as well as no new symptoms since starting Tysabri.

Everyone is different but I have ZERO side effects from Tysabri. I am healthier than I have ever been. I don't even get colds anymore. No one at works knows. I have infusions at the end of the day.

I continue to question my choice of meds as I have long been a believer in alternative medicine. But I am more scared of more progression at this point so I choose to stay with Tysabri.

Ultimately, it is your choice what you do with your body. No matter what advice people give, or what advice your neuro gives, you have to be comfortable with your decision. But I think it is so important that you are well informed. Obsessive googling isn't good, but also equally damaging is when you find one or two sources that confirm your fears without verifying that those sources are indeed trustworthy or using up-to date data.

Even your one favored study indicates there were patients who had progression. It is an optimistic stretch to say if they had started Tysabri sooner they "probably would have less disability, perhaps none". I appreciate when they post for themselves. Unfortunately I suspect your wife has had a rough go of it and hope that at some point if she is able she will join our group and share her unique experiences and opinions.

[Mamabug]

I just wish wish I could get over my ocd obsession with trying to “cure” this with diet, excersise, random dr google ideas (yes I know it’s bad to do that)

That's not OCD; that's just being proactive. It's a wise strategy; I wish I'd started sooner.

Dr. Google, if you frequent reputable sites, isn't all bad. You just need to be discerning about what you read and what you believe. There is a ton of helpful information on the internet.

I'm paying my doc, Dr G, a lot of money to give me advice similar to what you're doing. I'm hopeful that it will at least halt my progression and maybe reduce my symptoms.

Continue to exercise, eat a healthy diet, keep your mind active, and use resiliency strategies to combat stress.

[Daisycat]

I think I would regret taking Tysarbi the more I read about it. I don’t think there would be any way I would be able to hide my issue from people at work. I already don’t like being around sick people , but if I was using this drug and had a weaker immune system I would have to say something and the issue of me being unemployed without insurance would not be worth it. Plus feeling like I have the flu for a week out of the month doesn’t really appeal to me. The side effects I read about from this medicine came from the website itself about the drug.



I just don’t see the point in switching things up if something is working for me. I already told my neuro we can discuss changes in meds if an issue ever happens, but I am going to do everything I can to prevent that. It would also have to be a massive issue because I am not going to go to the Dr for a small inconvenience.

Mamabug



I know not everything on Dr google is a great idea. There are some really out there ideas that I just read about to get a good laugh, but if I find something from multiple reputable sites I am going to look into it.

[pennstater]

Choosing a DMT is a personal decision. Each person has their own risk assessment to make, as priorities in life may be different.

I am a big proponent though that it has to be a well informed, educated decision. I worry when it is not. Ialso worry when depression and/or anxiety may be clouding ability to fully analyze.

I, like sarabeach, wish I had started on Tysabri. Do I know my results would be different? No. Do I suspect they might - Yes. While I relapsed on Avonex, then Rebif and started to progress and was left with residual symptoms, I have had no relapses on Tysabri.

I have had a little progression of existing symptoms the last two years, but it was actually a function more of fatigue and less activity. I have battled thru, exercise and completed balance PT. I am back to baseline. I prioritize my exercise above all else now trying to stay at baseline.

So with Tysabri, I do feel I would have been better off. Just no way to know. That being said, I don't question my choices. I made the best decision I could with the knowledge I had at the time. I wouldn't have been approved anyway back then, as Tysabri wasn't first line med.

The PML risks are better understood now, based on JCV antibodies. Other factors then contribute to risk once positive. I plan on staying on it until kicked off or a study shows that with aging, treatment not needed.

Just like some people don't respond well to the early meds and relapse, some do on Tysabri and other newer meds. None are 100%. But from what I have heard at my infusion center, the people who seem to respond to Tysabri seem to do well on it. Those that have relapsed have relapsed on other meds too prior to Tysabri and seem to have more agressive form of MS. Just incidental observations based on the hundred or so people I have met at the infusion centers.

I am in the camp to hit it as hard as you can. But what that point is varies with each person. Good luck to all making the decision. So many more choices these days.

[Myoak]

Choosing a DMT is a personal decision. Each person has their own risk assessment to make, as priorities in life may be different.

I am a big proponent though that it has to be a well informed, educated decision. I worry when it is not. Ialso worry when depression and/or anxiety may be clouding ability to fully analyze.

I, like sarabeach, wish I had started on Tysabri. Do I know my results would be different? No. Do I suspect they might - Yes.

Thank you, Sarabeach and Kathy (pennstater) for contributing your personal experiences. Thank you so much!

Daisycat, rest assured treatment decisions are personal choice. As Kathy mentioned everyone has a unique risk profile and needs do what is appropriate for themselves. A wonderful thing about this site is that discussion and exchange of information may lead to better health. There is a ton of MS info to sort through and it helps to hear what others have learned and are learning.

Dear Jules, “Conflict is always the price of deepening intimacy and can only be resolved through proper communication”. Don’t know who said that but I like it!

Some PwMS do very well on Copaxone, however, most don’t. Some PwMS don’t do very well on Tysabri, however most do. Are those statements fact, or are they salacious, misleading opinion? Let’s examine further.

Scientific trials often report efficacy in percentages and sometimes those percentages are compared between meds in similar populations by both patients and doctors to help inform treatment decisions.

Let’s compare efficacy percentages reported in peer-reviewed scientific trials of Copaxone and Tysabri.

The first Phase 3 trial of Copaxone reported a reduction in annual relapse rate by 29% compared to placebo. That percentage has not changed significantly in any subsequent, large peer-reviewed trial. The largest trial data (n=1401, 943 of those were on Copaxone) listed in the prescribing literature for Copaxone states the following… 34% relative risk reduction in relapses, 35% relative risk reduction in T2 lesions, 45% relative risk reduction in T2 lesions; all compared to placebo.

The first Phase 3 trial of Tysabri reported a reduction in annual relapse rate of 68% compared to placebo. That percentage has not changed significantly in subsequent trials. T2 lesions were reduced by 83% and T1 lesions were reduced by 92%; all compared to placebo.

Obviously, there is a huge difference in efficacy.

While it is nonsense for anyone to predict an individual response to any medicine it makes perfect sense to make projections for a group based on accurate trial data. Being faithful to data we can predict that the majority on Copaxone will not benefit nearly as much as the majority on Tysabri. It is perfectly reasonable, based on data from scientific trials, to say those on Copaxone will experience more MS than those on Tysabri. There is no need to be offended by data or an opinion based on it. If someone does not agree with the trials, or me, that is fine, however, accusations are not in order.

I clearly expressed my opinion to Daisycat and then carefully presented percentages from trial data which shaped my opinion.

The accusation of me being salacious and misleading is as flimsy as grandma’s nightie.

Obviously, statistics and opinion based on data offended someone’s personal preferences so much it reduced them to insults. Needless as that was, "It ain't what they call you, it's what you answer to"- W.C. Fields.

Daisycat, please keep Cladribine in mind. I am hopeful for FDA approval in 2019 and it could potentially be a comfortable fit for your health and career. Be sure to mention it your next neuro visit for his/her opinion and input. Hopefully, I can soon make enough time to present some basic info about Cladribine in a new post so you may have a basis for conversation with your neuro, if you so choose.

MS is a battle for PwMS and for caregivers, too. Best to all and best to you, Jules. You face a foe I truly hate and battle endlessly in my own way. I only wish the best for you and each one affected.

I do truly believe early aggressive treatment yields the best result for the long haul, not always, but more often than not. I believe sound evidence supports that view even though I may be clumsy or offensive expressing it. My sincere intention is that no one suffer needlessly, especially through a lack of knowledge about rigorous, scientifically accepted data which may help prevent, stall, or overcome disease progression.

[Jules A]

Dear Jules, “Conflict is always the price of deepening intimacy and can only be resolved through proper communication”. Don’t know who said that but I like it!

Some PwMS do very well on Copaxone, however, most don’t. Some PwMS don’t do very well on Tysabri, however most do. Are those statements fact, or are they salacious, misleading opinion? Let’s examine further. I clearly expressed my opinion to Daisycat and then carefully presented percentages from trial data which shaped my opinion.

The accusation of me being salacious and misleading is as flimsy as grandma’s nightie.

Obviously, statistics and opinion based on data offended someone’s personal preferences so much it reduced them to insults. Needless as that was, "It ain't what they call you, it's what you answer to"- W.C. Fields.

Totally poor choice of word and not meant as an insult to you more about what I felt was a manipulative flavor to your post. Your comments were set up to incite strong emotions based on your opinion after reading a second hand account of reported recommendations and were peppered with derogatory statements about physicians. My reply was largely directed toward the bolded statements, which you clearly noted were opinions, but adding IMO doesn't negate the overall message which I believed worthy of someone calling on you to re-examine what you are putting out there for public consumption. I also have to keep my strong opinions in check, and fail miserably sometimes, so I'm not refereeing from the cheap seats here.

Side notes: I also like the first quote, regarding the second one-I have never been a fan of WC Fields and perhaps we need to explore why Nana's nightie came to mind so quickly? Excellent choice though.

What the second neurologist communicated, I believe is.. I’m a lazy doctor who won’t have to monitor you on your drug of choice, Copaxone. Long-term, I know it is not nearly as effective as newer meds and you will suffer progression in disease but that is your choice. Copaxone barely works against MS but at least the minimal side effects mean symptom management will require little thought or effort on my part. You will be an easy patient if MS progresses slowly, as often happens. By the time you are using a walker on Copaxone it will be too late for a highly effect med to make a difference but that is 10 years or more down the road so why think about it now?

Compare the second neuro to the third and the difference is shocking.
The second neuro is a disinterested dunce, IMO. Seriously, would you honestly be comfortable taking your dog or a beloved pet to a doctor of that nature? JMHO.

[KoKo]

Totally poor choice of word and not meant as an insult to you more about what I felt was a manipulative flavor to your post. Your comments were set up to incite strong emotions based on your opinion after reading a second hand account of reported recommendations and were peppered with derogatory statements about physicians. My reply was largely directed toward the bolded statements, which you clearly noted were opinions, but adding IMO doesn't negate the overall message which I believed worthy of someone calling on you to re-examine what you are putting out there for public consumption.

It's always best not to get overly aggressive, while touting any of the DMT's.

Take Care

[Myoak]

Thank you for your point, KoKo.

I greatly appreciate the congenial tone of your response, Jules, thank you so much. I really appreciate it! As far as granny’s nightie goes… well, humor is always welcome and I’m happy your appreciated it.

People with strong opinions are required to have good reason supporting them or it is just emotion and examination of those reasons is a good thing for everyone interested.

As far as derogatory statements about physicians, only one physician was involved. I expressed my opinion of Daisy’s second neuro, the one who was too busy or too lazy to read Daisy’s record or go over her MRI with her. I stand by my assessment of him. But that is not surprising to those who know me. I haven't much patience with substandard care or patronizing reasoning, doctors included.

The director of a MS clinic and I had seriously hot arguments when I became convinced that dose extension on Tysabri would reduce the risk of PML. A full year after our initial shouting match he put his own wife on Tysabri dose extension; exactly the issue we engaged over for months. Occasionally, argument results in something good. It may have prevented PML in a family member, in this instance. It was not pleasant but it was important and ultimately, worth the effort.

Yes, I realize it takes time to put into clinical practice what research is illuminating but sometimes, if we become aware of a health benefit and are convinced based on evidence and logic, we may save life or health. I occasionally feel obligated to argue forcefully, and I do so. Not for meanness sake but for sake of life and health, the best health possible.

Offensive as my opinion about Daisy’s second neuro was, it remains my opinion of him. Probably, he is very nice and very capable… much as the director I argued with at the MS center. But Daisy’s second neuro is clearly not as diligent as the third neuro she mentioned. I am not going to sugar coat it; it is what it is. Yes, I accept not everyone acts or reacts as I do but something inward strongly compels me to reach for the best when humans suffer, especially if I believe a professional is not doing their best for a disease sufferer, or a med, for that matter.

Jules, my friend, I chuckled reading my opinions were based “after reading a second hand account of reported recommendations”. Not at all. My opinions are based on decades of intense scrutiny of MS research and from a great many conversations with PwMS, especially at the 14-chair infusion site where I have conversed intimately with dozens upon dozens of PwMS over the years.

Especially notable in my mind is the total lack of any noticeable side effects reported by those on Tysabri. We know from trial and real-world data not everyone does well on Tysabri and some do experience side effects but I rarely encounter anyone with so much as a cold on Tysabri. Yes, PML is a huge concern; some people on Tysabri have gotten PML and it is devastating to say the least. But as a general rule the dozens I encountered and got to know were remarkably healthy. My observations carries no scientific weight but it can’t help shape my real-world opinion of Tysabri.

As far as reviewing MS studies go… well, this year as always, I reviewed all 1500 titles from the last ECTRIMS conference and selected 110 abstracts of what most interested me to read and followed up digging into the complete studies if they were available. My basement walls have been covered with white boards and flow charts for years following what I think is most promising affecting MSers.

I have shared with doctors what I used to potentially dampen JCV during transition off Tysabri for a family member and I hope a researcher or group will follow up on it. I cannot talk about it here because I believe some folks are willing to try anything mentioned without adequate thought for safety. I can report that my spouse’s transition went well and her JCV titer was lower the last two tests than it had been for years. A trial of one is not science so, no, I cannot in good conscience discuss it, and shouldn’t.

But there are always new things to learn and this site enables us! This is so last year but it’s fun …

Did you know that Santa’s reindeer are all female according to zoologists? Daisy, you work for a vet, so maybe you already know… Of the 40 species of deer only reindeer features females with antlers. Male reindeer lose their antlers by mid-December... so Rudolph?... has been outed and can stop pretending. We always knew females do all the hard pulling, anyway, didn’t we?

[Daisycat]

While I think the choice of drug Someone makes is important, I think there are other factors to consider.

I think someone on a weaker med who eats healthy, doesn’t smoke cigarettes and doesn’t drink, works out , lifts weights, and does yoga/meditation to relax, finds ways to keep their brain sharp, takes vitamins, etc

has a better outlook than someone on the strongest meds but smokes and drinks and eats fast food every day and never works out.

Lifestyle Choices do have something to do with this or trust me I’d be a lazy couch potato who only got up to smoke or get another shot

[gargantua]

I think someone on a weaker med who eats healthy, doesn’t smoke cigarettes and doesn’t drink, works out , lifts weights, and does yoga/meditation to relax, finds ways to keep their brain sharp, takes vitamins, etc has a better outlook than someone on the strongest meds but smokes and drinks and eats fast food every day and never works out.

Yeah I agree with this. I think that if a person's lifestlyle is counter to standard recommendations (ie don't smoke, eat a heart healthy diet, exercise if able) that their outcome is likely to be worse no matter what they are on.

[Daisycat]

Yeah I agree with this. I think that if a person's lifestlyle is counter to standard recommendations (ie don't smoke, eat a heart healthy diet, exercise if able) that their outcome is likely to be worse no matter what they are on.

I think diet and exercise is probably one of the most important things we can do when it comes to this disease. Thankfully I have always enjoyed working out... but I cannot express how much I miss smoking. I would be the happiest person in the world if it was found the smoking would cure this disease 100%.

but I know that will never happen... so I will have to settle for being the weirdo who sniffs dogs that come into the clinic smelling like smoke.

But I did decide to stick with the third neuro. She was great about answering my follow up questions and seems to actually care about my long term out look.

She said that she is 100% OK with my staying on Copoxane as long as it is working for me. So I guess I will go do my work out that I have been putting off all day now since these threads reminded me I need to do that.