choice?

[beema36]

My question is do you feel it is the patients right to say no to a medication?
I have been on rebif since 2001 and 6 months ago my neurologist says its not working yet he still has me on it but he wants me to take tysabri. After weighing all the pros and cons of this drug I feel it is not a good choice for me. I also have autonomic dysfunction and some real disabilities with that. I am.very sensitive to drugs. When I took the statins I got the rare muscle thing and almost died and ended up with some heart damage. The ssris put me in critical condition and again Dr said I could have died before they realized what the cause. Anyway I am very cautious now. My neurologist told me it was my decision but after going over all the information he gave me and researching it I said no. He was furious. I had my checkup this week and he again insisted I take it. I told him no but that my spascisty is so bad along with nerve pain I needed to discuss med for this. He told me if I won't take tysabri he won't discuss meds for that pain. Now my pcp nurse tells me she agrees that I should take it as he is the specialist. Am I wrong making what I feel is an informed choice or am a just a poor patient?
Beema

[beema36]

Thank you all for your wonderful responses! It means a lot. I do feel I need to find a different neurologist as we are not in sync coupled with the fact he and my primary Dr detest each other, refuse to communicate etc and for 11 yrs I have been a buffer between them. It's like dealing with a couple children at times.
My big problem is there are no neurologists here that actually specialize in ms and it can take a yr to get in to a new one. It will work out I am sure.
I did heavy research as having been an RN for so long I always feel I need to be informed. Along with that my pcp,electrophysilogist,.and cardiologist all researched it and also gave me their informed opinions. They all agreed with my other health problems tysabri isn't a good option and as the cardiologist said he feels it would be downright dangerous for me. They each expressed their thoughts to my neurologist 6 months ago and I assumed we would move on from there. I didn't expect having a standoff with a Dr on Meds I need. I am very disappointed in him. Again thanks all.
Beema

[AMO]

He tactics are sounding quiet extreme... bullying and scariing patients is my oppionion unethical. his w/c/ comment sent my blood to boil\!!
This is NOT about him andd it is your choice.

I  do not know hhow you like him otherwise , if you will stay with him. Even in  bad situations changging docs is easier said than done:(
If you doo   I Hope youcan find aa new neurro, one that is on your side   to support what decissionns you make in your own health.
keep us informed, amo

[SarahL2491]

The FIRST thing they teach us in nursing school is the patient has the right to say NO.
Repeat NO..................find a new doc...............
never ever let a doc intimidate you into taking a drug you don't feel right about or have bad effects from; ask them to take it then

[Saadbell]

Sweetie, you have the right to say NO, these doctors are not GOD's, and you are the patient, the one who has to endure the painful and sometimes useless treatments.  Telling you he won't treat your pain unless you take the treatments, which sound like blackmail to me.  I am not sure if that is even legal.  Somehow that seems wrong wrong wrong to me, I sure would check this out with a lawyer just to be sure.  You hang in there and remember there are people who are on your side and will fight this fight with you.  Sending you good vibes and healing.

[Quixotic1]

Here is the opinion from the doc's side.

First, You ABSOLUTELY have the right to refuse a recommended procedure, treatment or medication.  That is not even debatable.  The doctor should be respectful of that.

Second, the second opinion is probably a good idea, but I seriously doubt the negative effect that refusing a med with such a strong Black Box warning would have on future treatments.  Disability does not depend on whether you have risked your life enough.  I disagree with that aspect.  Tysabri has a ginormous cost to the insurance companies, so I don't think they would force the trial of it before granting something else.

The second opinion might present a side to the equation that you haven't considered.

Third, a physician certain also has the right to decide that he does not wish to care for a patient any longer if their attitudes toward that care differ so greatly.  (For example, I referred patients to other pediatricians when the parents refused all immunizations.   He should then tell you this and assist you in finding equivalent care.  He should NOT, in my opinion, attempt to extort you into accepting his desired treatment by keeping you as a patient and withholding palliative care - or withholding anything.  That is unethical and possibly criminal.  Granted he is probably trying to get you to accept what he sees as the best possible chance at holding the MonSter at bay, but he is overstepping his bounds.

You are well within your rights to refuse a treatment, but owe it to yourself to try to get as much info as you can.

Good luck,  it looks like a new neuro is in your future.

Quix

[shermay]

This sounds like a very similar story that my Neuro told me too about 18 months ago.  

It was Tysabri or nothing, and if I didn't take it I would most certainly be in a wheelchair within several months - and if I chose NO then he would refuse to treat me, needless to say after that he now my EX Neuro.

You have the right to say NO, I spoke with another Neuro after this really traumatic meeting with him, and she said No means NO.  We have a choice.

Sometimes these Neuros play God, but that does not give them the right to force their opinions on anyone.  

We may have MS, but it doesn't alter the way we think now does it?

Debs x

[gypcwmn]

I think I would tell him what an *** he is. Just my opinion!

[twopack]

Oh Lordy, with the wheelchair comment I'd be on the move to someone more in line with your type of priorities.

Mary

[twopack]

It doesn't really matter what anyone else feels or thinks.  Patients always have the right to refuse or withdraw treatment consent, period.  As Bob says though, you would be wise to make sure you have as much accurate information you can gather before making a final decision.  Not all treatments will always be available if you change your mind later.

Your doctor has an obligation to provide you with current information and his best recommendation.  I doubt it is considered ethical for him to hold pain treatment hostage while he leverages a ransom payment from you of consent to a treatment you have already stated you don't want.

That said, your doctor isn't necessarily obligated to treat a patient who refuses to comply with his best recommendation.  He can (and probably should) refer your care to someone else if he believes the two of you cannot come to a workable agreement about how to manage your disease.

I hope you can both step back and re-evaluate.  It sounds like you have been in this together for a long time.  It also sounds like you have lost respect for his judgment and the others in the office as well.  It may be time to move on and find another doc.

Good luck in this difficult time.
Mary

[beema36]

Thanks for your responses. I am on disability and have been for years. Taking tysabri would not make me less disabled as its,effect seems to be to slow progression and some people do feel better also after taking it. I failed to mention that my electrophysilogist and cardiologist both felt the side affects of this drug might make my autonomic dysfunction worse. That was a big reason 6 months ago I chose to say no and was,shocked when neurologist brought it back up. He said he would rather be dead then in a wheelchair. While I don't want to be confined to one I feel one can still have a good life that way but if you are dead that's pretty final.
Beema

[JemmAus]

Absolutely it is your decision. I have an example - my cousin was diagnosed with bowel cancer 18 months ago, and immidiately underwent surgery followed by intensive chemo lasting 6 months.

After about 4 months, she suffered a pulmonary embolism (a side effect from the whole business) which ended up infarcting her entire left lung.

She recovered from that (amazing!) but on her second last chemo treatment she suffered an anaphylactic reaction to the drugs - YES same drugs they'd been pumping into her for 5 1/2 months. I guess the fortunate thing is the chemo is given in hospital to if you're going to try dying five minutes after they inject the stuff, it's a good place to be.

She was given the "all clear" after this.

Needless to say, a year after all this nonsense her cancer returned (brief 'all clear!")

She said she is NOT going through the chemo again , after her previous experience. She is 48 years old with two almost-grown kids. She said she would rather die having a good time on the way out than be stuck in hospital with tubes making her even sicker.

So, it's your choice. Inform yourself of all risks and benefits, and go from there.

I must say , after reading Bob's comments, I am so glad (as usual) to not be in the USA, if these blasted insurance companies can make life difficult for you to choose.

cheers from Australia

jemm

[COBOB]

It is your body and your life.  The doctor has the duty to provide you with information and you should participate in the development of your treatment plan.  After you discuss a medication or procedure, you the patient must say Yes or No.  That is the fundamental idea behind "Giving Informed Consent."  You are not required to consent.  Given the information you have been provided, it is your right to withhold consent. You should consider a second opinion before you withhold consent.

Depending on the situation, this can have some profound effects. Your insurance company may have issues with this.  State and local social service agencies may limit services with you withhold consent to be treated with a recommended therapy.  It can also effect your standing in the future if you file for SSDI or other federal programs.  As long as you can show that the decision was balanced and made in good faith, you should be OK.  This is why a second opinion, on record, can be very valuable.

You should really discuss this with your local MS Society or other patient advocacy group before your make a decision.  At least that is my opinion.

Bob