I give up

After a year and all the migraines I give up. My neuro had me on a beta blocker that was not one for people with asthma the whole yr. I was having a hard time breathing and with the fatigue.
She said I could not take any more Beta blocker's.
She seems to be against me going off the G. I don't know.
My GP and pharmacist says she is wrong about the BB.
That she should try a safer one. She wants me to refer me to a neuro about 170 miles away. I have just lost faith. I am going into an MS flare and she stopped returning did not return my call.

[Redwings]

Hi Cindarelly:
I'm sorry to see that you're feeling so discouraged. Sometimes a situation becomes more complicated than a person is equipped to handle alone. And frankly, sometimes none of the choices are good. (I'm in that situation myself right now.)

With the known cardiac risks of Gilenya, and some of the new information that's starting to come to light, beta blockers may not be the best drugs to be on with Gilenya. The safety information for Gilenya says that caution should be used in patients taking beta blockers for heart problems. The safety information doesn't address beta blocker use for other conditions.

Your pharmacist and GP are correct that a "safer" beta blocker might be used, but your description implies that they're looking at the situation only from the asthma/lung perspective, not from the Gilenya cardiac perspective. There are no "heart safe" beta blockers, which is the issue with Gilenya. So even if you aren't having any heart issues with Gilenya and a beta blocker, new information implies that it can't be ignored as a consideration.

It's beyond the scope of a forum post to get into what's triggering your migraines or whether beta blockers are the appropriate class of medication to treat them with. (I bring that up because if the migraines seem to be caused by Gilenya, using a medication to treat a Gilenya side effect that already has to be used with caution when it's used for non-Gilenya related issues really complicates things!) What is appropriate here is to examine whether your neurologist is the proper doctor to be managing your care under the circumstances. She doesn't appear to have the qualifications to use a variety of beta blockers, particularly in an MS patient on Gilenya, which is why she's uncomfortable with the idea and has referred you to another doctor.

When a doctor doesn't want to manage your case anymore, that's your clue to take them up on it and move on. You can't change the doctor or make them do anything they don't want to do or aren't qualified to do. You can't control the doctor, but you can control what you do about the situation. You don't have to go to the doctor that's 170 miles away if there's a suitable neurologist closer to home. If there isn't, the reality is that you'll have to work with that, even if your choice is to do nothing.

So go ahead and vent. You can spend awhile feeling discouraged and defeated. And you can spend some time fighting reality and cursing fate. But you can't keep that up too long because you'll only end up hurting yourself. Losing faith in your doctor shouldn't mean losing faith in yourself. Give yourself some time to get your bearings back. Things usually look better with a little perspective.

[Cindarelly]

My GP has already put my on another beta blocker. It is for migraine prevention. He suggested I go on the G every other day. He made an appt with another neuro close to home. My old neuro did not "drop" me for MS she just wanted me to seek treatment for the migraines from the other neuro.. Her choice of beta blockers is baffling to me.
It is a non selective beta blocker. She is listed as a migraine specialist. I think my wish to be off of G Or to try and stop it to see if it the migraines let up... was ignored.. was unacceptable.. so yes, I will move on.. and I will vent louder after moving on ....She made a big medication error.If she has chosen not to treat me.. she should have chosen a dr close to home or at least told me. ( she never said she would not treat me. Just never returned my ms related call!

[Redwings]

He suggested I go on the G every other day.

It's interesting that you bring that up. The FDA panel, in approving Gilenya, calculated (didn't test, but analyzed on paper) the chemical/metabolic effects of a dose that was half the amount of the amount applied for/approved. The committee found evidence that a half dose could be just as effective in some people as the full dose, so recommended that the half dose also be tested. It will be interesting to see how the every-other-day dose works for you.

It sounds like the migraine-specialist neuro was out of her element in working with you, and she knew it. HOORAY that your GP picked up the ball for you! Now, upward and onward to a new neuro! Please let us know what happens.

[Cindarelly]

The G is most probably making my migraines worse. That is why I asked neuro to stop it. She simply never answered me. ODD to me. Do you have any links or info on the FDA and the half dosing. Looks like the neuro would?? I guess she doesn't. It seemed to render her speechless. It was a signigicant side effect..

[Redwings]

Hi Cinderelly:
I referred to the FDA calculation in a post in the Gilenya forum last year (http://www.msworld.org/forum/showthread.php?t=112744), but I didn't give a citation for it and I can't find it now. However, if I could find that information online, your doctors surely can, too. It's most likely that I found it in an FDA drug-approval document.

I agree that it's odd that your doctor didn't respond to your request to stop Gilenya, but she might have felt that her referral to another neurologist was her response.

But I also find it odd that your neuro -- or even your GP -- would use a beta blocker as a drug of choice to treat a possible Gilenya side effect (the migraines) when beta blockers are already suspected in causing heart problems in Gilenya users (the man who died after the 6-hour observation period was reported to have been on a beta blocker, and supposedly he passed his EKG or wouldn't have been allowed to start on Gilenya). It's one thing to already be on a beta blocker for other reasons when starting Gilenya (assuming that other DMDs haven't been effective), but to add on a potentially risky drug to treat a side effect of a potentially incompatible med may be beyond your GP's expertise (it isn't realistic to expect a GP to understand all the intricacies of obscure medications that few patients are taking). I'm glad you'll be seeing a new neuro soon!

[Cindarelly]

The man that died was on both a beta blocker and calcium channel blocker. I assume for heart problems. ( don't know any specifics)
My neuro took me off of a (pretty asthma safe beta blocker to put me on a non asthma safe beta blocker. I have asthma not heart disease. The beta blocker was being used to treat migraines. She said since that one had given me breathing trouble they all would. (nothing to do with G) many are taking beta blocker's on G. Because it's is causing their blood pressure to go up. ( don't know the specific's of this too. I think what is watched is the heart rate. So far nothing adverse .. but they watch this first 6 hrs.. or now 24 hrs.. Basically she made messed up on me. I do hate to be unmedicated for ms. My head has not been out of the bed much in 30 days.. it's been a downhill spiral since after about the 4th month.. I don't understand her lack of words either. She is listed as a migraine specialist. Migraine's are a main side effect.. I may just not be able to take the med. For me its simple.. some dr's just can't think simple.