How do I tell my neuro NO?
 

I just had my latest MRI on Friday and if it shows any active inflamation, my neuro wants to start me on imuran. After doing some research on this drug, it's efficacy, and potential side effects (not pleasant), I do not want to take it as this time. There does not seem to be any consensus on whether it helps or not, and it is considered a chemotherapy drug. I have not had an attack since my first one last spring, and my ms (symptom wise) seems to be stable.

I know I may be worried about nothing. Hopefully, my MRI will not show any active inflamation, but I am trying to figure out how to deal with him if I do have changes. I know I have the right to say no, but I keep doubting myself. Maybe I should follow his recommendation ... How is he going to react if I refuse to follow his advice?

*lol* I tell my neuro. NO and I actually left his practice once ;) 'Cause we're the ones that have to deal with the consequences so you do whatever you feel is best Barb.. go with your gut and what makes you feel comfortable and happy! And if you can't...give me your neuro.'s phone number and I'll do it :) Has the Neuro given you other options if it shows active inflammation? Other treatments you can do that you feel comfortable with? And you can delicately explain you're not comfortable with using the Imuran at the moment and what other things you can do!

And like I said.. if you want me to speak with them ;) I will.. I will be hoping nothing shows up and the point is moot, but if there happens to be any active inflammation.. do what you feel is best.. its your body! :)

Monique

You could just say: "After doing some research on this drug, it's efficacy, and potential side effects (not pleasant), I do not want to take it as this time. There does not seem to be any consensus on whether it helps or not, and it is considered a chemotherapy drug. I have not had an attack since my first one last spring, and my ms (symptom wise) seems to be stable."

If he flips a gasket, thank him and go find a new neuro! You can also tell him that AMN agrees with you!

You don't have to make the decision on the spot, do you? If (I repeat, IF) the MRI shows any activity, you could always say something like "I really need some time to think about that decision." That would at least buy you some time.

I also think that waiting until you know for sure and then taking some time to make your final decision is a good idea. Hopefully it won't even be an issue! Jules

On Imuran's behalf, I believe it has been a stabilizing force in my MS adventure. I'm am very med sensitive and this one has no side effects that I've noticed. I took it for about 3 years, stopped because I moved across country. New neuro said no Imuran. Had me try another DMD and I didn't tolerate that one either. That was 3 strikes, no Av, Cop, or Rbf.

Finally he relented after a year of continuous exacerbations and no other treatments. I've been back on it and re-stabilized for 1-1/2 years and counting. I'm now back in my home state, with my old doc and happily taking Imuran.

When used at a high dose as chemotherapy the side effects are intense, I would think. I take one 50mg tab 3x day. At such a low dose it reduces the immune system made overactive by MS. Like I said, years without any issues.

Trust yourself and take your time making decisions. I wish you all the best.

:hug:

i take methotrexate (+ my copaxone) for the same reasons.
i too was very leary but agreed after i talked to my neuro several x's about it and we discussed the side effects and the low % of getting them.

of course, if i get them i'll really be kicking myself for MY decision.

i agree with the above advice.
it's within your power to say not at this time. you are a member of your healthcare team. you're the final decision maker.

AMN said it best.
also consider taking another advocate with you to the appt. you may feel better that way.

and, i hope you have no enhancing lesions.

Well, first off taking any new drug that has potential side effects warrants some thinking. Any doctor should be understanding if you want to think on it.

Another option is to ask the famous question "Doctor, is this the only treatment available? What are my other options to consider before trying chemo? What is it about this medicine that you think would work for me?"

I told my Neuro I wanted to think about it before starting on Beta. He understood.

Sometimes I think doctors don't expect us to be as knowledgeable as we are on our condition - they're used to just writing prescriptions without any questions. My Neuro told me that I was one of only three MS patients that come to their appointments armed with the latest information on MS treatments. He even admitted that he looks forward to hearing what we have researched.

I'd make a list of all the questions I had regarding this treatment and ask him at your next appointment. It's your body and your decision. Our doctors are just one link in the chain.

just ask the doc what part of no didnt he understand, I agree with amn on how to approach it, tell him or her your concerns, and if they are no agreeing with you find a new doc:hug:barb:hug: