Medication debate with doctor?
 

How much can an ms patient debate with their doctor on treatment medication? I checked out the national ms foundation's ten approved medications, and I have to say two or three of them there's simply no debate necessary. I'm not taking them thank you very much.

And as I am still a dedicated member of the amoxicillin club for infection treatment, I would prefer an older treatment that has built up a history. For my first choice it would be Coxapone. I'm not particularly concerned about allergic reactions even ones that may develop with continued exposure. Give me an epi-pin with it if you must, I know the signs of an allergic reaction. But some of the newer ones I simply don't trust yet.

My devotion to amoxicillin has saved me from being prescribed some of the newer antibiotics that are now being linked to serious health problems, including neurological damage. There's no school like the old school :D. Though admittedly if I were a bit worse off than I am currently, I'd probably happily don my little white mouse ears and tell them test away! I just don't see the necessity for it at this point, gimme a few years....

But how much can one debate with their neuro over the medication? Especially when the effectiveness, old or new, is unknown. Does that open it up for more personal choice? Or remove the choice and the neuro simply picks the one they like?

Arguing for amoxicillin with the GP is easy, he can point out that the newer ones are more effective, but can't tell me that my amoxi simply isn't going to work it is effective but does require a larger dose on some infections, and has tried to argue the finer points of a tiny pill once a day versus up to two horse size pills four times a day. Neighing and tapping my foot twice is my answer. And my strep, bronchial infections and whatnots have cleared up in a few days. Only once did I not argue, it was a mild tonsil infection, figured it wouldn't matter... And it became 'resistant' pneumonia that finally cleared up after near hospitalization when the doctor gave me amoxicillin, having basically run through the other antibiotics with no signs of improvement only worsening of the infection.

That makes for an easy debate, it's proven effective and has been around long enough for patients to report any and all possible side-effects including any and all that might crop up down the road after treatment. All of the MS treatments lack measurable 'effectiveness', and really both the new and the old are babies in the world of medicine concerning side-effects. So how can I enter a debate with the neuro? And should I even try?

Any potential side-effects are going to be dependent upon my body's chemical make-up, ditto for the effectiveness. But I really don't want to play Russian roulette at this time, or at least since I'm going to be playing regardless, I'd like the chamber to be as empty as possible.

Starznight,

Multiple Sclerosis is one of the few, if not the only disease, in which the patient can choose which medication to take.

I doubt there will be a debate as the majority of Neurologists either give the patient information packets about the treatments or tell them to research on line and let them know which medication they would like to try.

Some Neurologist do have a preference but it is still your choice.

It is ALWAYS your choice. Period. You sound like a well informed consumer/patient and a good self advocate. Keep doing your homework and discussing with your doctor, but don't ever forget, they work for YOU, not the other way around.

Hi there

Ultimately, this has to be your decision - a doctor cannot force feed you with drugs that you are not prepared to take.

There are many options out there for us (which is fantastic) - for me, even JC+, my preferred choice is Tysabri - after 8 or so years of Betaferon. It works and doesn't interfere with my day-to-day life.

My Neuro wanted me to take 4-Amino Pyridine (a version of Ampyra) - but I had a really bad experience with it - so I stopped.

But that is just ME - your choices, symptoms and experiences are YOURS. You will find what works for you. It's pretty scary when you first start on this journey, but things will (hopefully) settle down and you will find some clarity to help you with your choices.

Best of luck

i agree with all that it is YOUR decision...although I have heard that some MS centers push certain DMDs over others...
my neuro suggested Ampyra also. I had problems with it and told him I didn't want it any longer. He did make the case for the drug but didn't fight me on my decision.
Your neuro is a part of your team-not the manager! You along with your loved ones work together to find the most effective and least harmful treatment.

i was given the choice of med when i was first dx'd. i was on copaxone for 10 yrs and i'm 65. i decided, with my neuro's input, to stop. i've had a stable course and knock wood i've been ok.

sometimes antibx's don't work anymore. you can have, or the med can have, a resistance. then it's time to try something else, provided you tolerate it.

i've had talks over time with several of my drs about meds and have been right a few times. don't stop researching and learning. you are your own best advocate.

I agree 100% that we need to be our own advocate and we certainly have the right to refuse a certain medication. However, imo, it is never a good thing to come off like a total "know it all". Actually that's probably pretty good advice no matter what the topic and our background. :winky:

If we remain open minded and interested in learning about different therapies and wiling to respect/consider the provider's rationale for why they suggested a certain medication we might just learn something.

Thank you everyone, I know I have the right to refuse anything. But was concerned a bit concerned over refusing and getting 'kicked out' sort of deal. Seeing a neuro is new to me, but I've had a bad run of ortho doctors down here. The second you don't go with their plan is the same second you can give up on them doing anything else productive.

When I refused to have my ankle casted for a second time (a great thing since they misdiagnosed it from the start) I was basically kicked to the curb, even though the doctor said he didn't really think it would help, but if I was unwilling to shell out another three grand in casts, there was nothing more they could do for me.

So that was a bit of my concern there aren't many good doctors around here, if I have to give up this neuro for such tactics, I'm pretty well up the proverbial creek. Especially since she's the only one that treats MS within an hour's drive of my home. A three to four hour drive in the summertime heat down here... So not happening. But I will cross my fingers that she is reasonable when it comes to treatment. She was nice enough during our first meeting, and thorough in explanations so really hoping it will be the same case when it comes to treatment.

As for how much debating you can do with the neuro about MS medicines, I'd say it depends on the neuro. In my experience most neuros (I've had 3 or 4 over many years--#4 shouldn't really count because I saw him only twice and he was laughably bad) like to keep conversation to a minimum and seem like pretty busy people. I tried to find out about the MS meds by going online to the Websites for the different drugs--and reading MS message boards in a big way. If I had questions about a drug, I called that company's toll-free number and asked.

They're more than willing to deal with your questions. They have a lot at stake here. An MS patient on an MS drug might be on that drug for life.

I was on Copaxone for nearly 3 years and was also concerned about reactions. There are the site reactions, which many people have. Those are usually bearable and there are ways of preventing or easing them.

But there's also the "IPIR" (immediate post-injection reaction). I've never had one of them but was concerned because I live alone and understand that some people have had to go to an ER with this reaction, even though the Copaxone literature tells you that the reaction normally lasts only less than half an hour and tells you what to do to get through it on your own.

It's not an allergic reaction. According to Shared Solutions (the Copaxone support people), it's "like" an allergic reaction--but isn't. I've never heard of an epipen being useful for Copaxone reactions.

Your neuro should not dump you just because you don't want to be on any MS drugs. I still have a neuro even though I went off Copaxone about 3 years ago. I just see him much less often. When on Copaxone I saw him once or twice a year. Now I'm down to once every few years.

Just got back from neuro appt. and she was really great when in came to the meds, as well as surprised that I had already researched them and even more so that I had chosen what she also felt might be the best starting point. Now hopefully I qualify for the assistance in filling the rx, otherwise I might be forced to change to a different one?

If your insurance company tries to stick you with a huge copay, be sure to call the manufacturer of the med first to see if they have an assistance program. When United Healthcare decided to jack my copay for Rebif from $50/month to $913/month with no notice, I was able to get assistance from Rebif to keep my premium from going up at all. UHC has since tried to screw me over a couple of other ways to get me off of Rebif, but I have managed to stay on it and have a manageable copay.

That's awful. Did they even have an alternative to Rebif or did they just want to stop paying for it?:mad:

My doctor already sent the rx straight to the manufacturer. Hopefully I'll hear from them soon, a bit anxious to get started in the hopes that I can slow things down.

One other question though, the pain mgmt doc doesn't like giving out narcotics for MS pain, I can understand to a point, took lortab and percocets for pain over the years and really didn't do anything more than make me hyper and in pain rather than lazy and in pain. I mean they did help a little, or I wouldn't have bothered taking them at all, but it was only a little. The better than nothing assistance.

I had meant to ask about alternatives for pain, but honestly today at the doctors office I was upset about an unrelated thing... Upset stating the case mildly, lividly homicidal.... And was discussing the MS dx at long last that I never even thought about 'pain meds' I mean I almost forgot to ask for my imatrex.

But aside from narcotics or NSAIDs is there anything else for pain?

I take muscle relaxants for constant spasms, which helps the pain some, but honestly there are more days than not that I'm almost driven to suicide for the pain. More than open to any suggestions before my next appt with the pain doc again, since he tends to take my opinion to consideration.

I know anti-depressants have some benefits for nerve pain in things like fibro, has anyone tried them for MS pain?

I take Amitryptillyn or Elavil for my nerve pain. I also have trigeminal neuralgia in my face from the MS and take Tegretol for it. They both help immensely. Good luck

Some have good results with Baclofen if the pain is due to spasticity.

I've found physical therapy to be very effective but it takes time to notice results. I've had about 5 courses of PT over the years, and each one was 8-10 sessions and usually involved eletrostim as well as ultrasound.

TXBatman, I have UHC for dental insurance and have noticed that they're not rated very high in any category where consumers rate insurers. I've had my problems with them, mainly in connection with trying to reach anyone there by phone who can answer a question--and they're very slow in getting around to acting on claims.

They wanted me to be on Copaxone or Avonex instead. They have a list of about 4 or 5 "STEP" therapies that they want you to try at least 2 of before letting you have more expensive medicines. I had already been on Copaxone for a couple of years and ended up doubling my lesion load in a single year while on it. So I got moved to Rebif and had been stable on Rebif for over 2 years when UHC suddenly decided that Rebif was too expensive and they were going to change from a $50 copay to a 20% copay (which was $913/mth for Rebif). And FYI, you have to fill it through their pharmacy (Optum RX), they won't let you find a cheaper price elsewhere and pay 20% of that price.

So I went to the maker of Rebif and asked about an assistance program. They enrolled me in a program with very few questions asked that pays my entire copay. So I was fine on that for a few months. Then UHC sent me a letter saying that effective Jan 1, they were not going to accept that copay assistance card any longer...that I would have to pay out of pocket. I called Rebif again and they said that they would still reimburse me for the copay...I would just have to submit my receipt to them so they could pay it. It was just UHC's way of trying to make it as difficult on their patient as possible to try to keep me from using the manufacturer assistance program. So I resigned myself to having to pay out of pocket and submit receipts.

So imagine my surprise when I submitted my first refill of the new year and had zero copay still. I guess somebody at UHC realized Rebif wasn't going to blink and back down, and that UHC would only be punishing their own customers. So they relented and kept accepting the copay program. Everything is fine right? Nope.

At the end of February, my Rx for Rebif ran out of refills, and the neuro submitted a renewal...normal routine stuff right? Nope. UHC denied the coverage, insisting that "there is no clinical confirmation of the effectiveness of the medication". Which apparently is their code for "you haven't proven that a cheaper medication wouldn't work just as well". Well isn't that interesting... Amazing that the Family Practitioner who signed UHC's letter denying my claim apparently knows more about the effectiveness of neurological meds for MS than the MS society, MS specialists all over the world, and my neurologist who all believe that Rebif is an effective medication to slow or prevent relapses.

It really is amazing that a family practice doctor who has never seen me, never read my scans, and who has never reviewed my chart can make the decision to overrule my neurologist about what medication is likely to be effective for my MS! So while we fought with UHC over the issue...they wanted me to try one or more of the other meds first...I was off my Rebif for over a month. I ended up having to go back to my neurologist, get another MRI, and resubmit more paperwork to UHC, and finally they relented and approved the Rebif Rx.

I really felt like a total guinea pig...like UHC was trying to say "here little guinea pig...you are healthy on the med we have been giving you...now lets take you off of that and try something different. If you go blind or lose the ability to walk or can't balance to ride your bike anymore...then maybe we will agree to let you go back on the med that was working for you...after the damage is already done". And all in the name of saving a few bucks. Isn't it amazing how all of these cost cutting efforts by UHC came about right at the time a certain national health care program was being put into effect? If you like your coverage you can keep it my ***!

In the end, I am still on Rebif, still getting my copay assistance from the drug maker, and still healthy (although my recent bloodwork showed some evidence that the Rebif might be impacting my bone marrow and blood counts), so I have won the battle for the moment. But I don't have any doubt in my mind that the accounting weenies at UHC have their best and brightest furiously looking for another creative way to force me off of Rebif and onto something else or to force me to pay more for my Rebif.

If I can find a way to do it, I will be getting off of United Healthcare next year, but it might take changing jobs to do it. Which I believe is the goal UHC was seeking all along. If they can "encourage" those of us taking really expensive medicines for chronic conditions to "choose" other insurance companies by making our lives miserable, then it helps them keep costs down. The new law forces them to accept us as patients even with pre-existing conditions, but it doesn't force them to treat us well. If they abuse us and make it extremely difficult to get the care and medicines we need, and we go somewhere else as a result...it is the same end result for them as if they had denied us coverage for having a pre-existing condition.

Sheese TX, what a nightmare!!!:hug:

In the end it's all about the money isn't it. Who cares what happens to the patient, we have our $$$. :mad:

I currently take baclofen 3x a day and zanaflex at bedtime. Hoping to get into physical therapy again, until then I adore my tens unit. But there's still just a ton of pain for all that. Granted I have a multitude of soft tissues injuries, from the toes to the pinkies it seems,where the muscles have ripped my body asunder.

Personally I'm not quite convinced it's just nerve pain from MS, but the docs seem to think so. Which is why I'm wondering about non-narcotic alternatives. Thanks to the tendonosis in my ankles I can't take NSAIDs or I simply can't walk and the pain is expounded. But that leaves the rest of the injuries that might benefit a bit from them SOL.

Of course I might run into the same issue with PT, last time I did any for the legs I got kicked out since they nearly did succeed in crippling me completely. Ah the joys of long-term issues without answers. Thankfully that is finally over, now if ready for them to put me under a knife or something to fix some of these:D

Starznight, PT can be exactly the wrong thing for some people. The physical therapists are supposed to be trained to sort out those who will benefit from PT from those who won't, but of course they're not always accurate.

TxBatman, insurance companies must be even more eager to tighten those purse strings than Medicare/Medicaid, which is known for wanting to economize in every possible way.

For the 6 years I was on Avonex or Copaxone (first one, then the other), every cent of it was covered by Medicare/Medicaid, and I probably shouldn't have been on either one of them because I have SPMS and have had it since at least 1980. Those drugs aren't known to have any benefit for people like me, but a lot of neuros firmly believe that doing something is better than doing nothing, and Medicare/Medicaid didn't mind paying for it.

Most insurance co. are certainly looking out for their interests first, after all they are a business. Though At least with medical insurance I get more than what I pay out, unlike auto insurance I've probably paid enough in auto insurance over the past 18 years to have bought 2 new cars...

But that's a whole different rant :D

As to the PT, I really can't knock them for not weeding me out till things become much worse. I never can tell the difference between 'pain!' and 'pain....' At no point have I ever needed to split hairs over pain or 'discomfort'. But I find getting kicked by a shod horse, 'uncomfortable' so I already know my perceptions of pain are skewed. Add my stubborn personality and yeah PT can be great or worse mistake of my life :eek:

But therein lies the other issue I'm having with pain, the more I'm in intense PAIN the more desensitized to 'discomfort' other might call 'pain'. Prime example is dropping a frying pan on my foot today, right across the bone, with a resounding 'crack' and I only flinched over the rattling sound as it wobbled on the floor.

I felt it hit, I can 'feel' the bruise in that I can feel the pressure from the pooling blood. It's not numb, it's just too slight an injury for the brain to even notice it. I know it hurts to do that to one's foot, it certain stung like a mother years ago, and enough people have done it to themselves that you know there's supposed to be a little pain dance and choice words following such an occurrence.

Burns are becoming much the same. I know I burnt myself, I can tell I've run the burn under cool water enough, or I've applied sufficient burn cream to it, but the brain refuses to ping "pain!' Or even squeak out a little 'ouch'. It wasn't an issue when I was taking narcotics, it kind of brought all the little and big pains together in the same spectrum, but now the monsters are taking over the little guys, so the little burns have a wider gap between noting and treating, bruises get whacked and mistreated plenty till there nice and black.

Something needs to change, that's for sure... I'm getting too many scars just 'living' with it. And I'm not "living" very well with the pain either since I can't help but think of creative ways to kill the pain at its source.

Reality check on RX choice
 

My problem wasn't with my Neuro, but insurance. Let's face it they choose by refusing to pay until you try their preferred formulary. My Neuro argued with insurance to keep me on Avonex...it was working and I didn't have issues. They were trying to force me on Copaxone(I don't want a new strain of drug, they all stop working at some point so why burn through them early.) The best we were able to do was get insurance to agree to Rebif. One thing I do know is don't refuse to be heard and fight for what you know and want. You may not win 100% but for me I got the 80%. 4 years and no relapse so far; cheers to another 40 more I hope!