Wellness

[LilacTree]

How about the one that cautions "may cause neurological disease which is usually fatal."  Who in their right mind is going to take this drug!!

[Tinkrbl44]

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@LilacTree wrote:

A little OT, but I recently asked my GP if she could increase my prednisone scrip (which she has been giving to me for years) by 2 mg to 10 mg instead of 8 mg because my pain is getting worse.  She refused and said I'd have to see a rheumatologist to get an increase.  BTW she does prescribe prednisone to patients for various reasons.

I went to the rheumatologist she referred me to and received the usual lecture about taking a biologic.  She would not prescribe the prednisone to me until I researched the two biologic meds she wrote down for me (both of which I am very familiar with).  So, I did that.  I researched them both thoroughly and came to the same conclusion.  I am used to the side effects of low dose prednisone, I do not want to chance the side effects of these other two meds.

I called her office and spoke to her assistant and asked for the prescription for prednisone again (I am almost out of pills by now).  She called me the next day and said I would have to see the rheumatologist first to "discuss" it.  However she has nothing available until January.  I told her I was going to run out of pills by then and she carefully re-read the doctor's instructions to her as to what she should tell me.  I said, what do I do if I run out?  I will wind up in the ER not only with pain but with possible adrenal gland failure!  She said I should call my GP and wished me to "have a nice day" and hung up.

I callled my GP's office and listened to a VM that said they are in the process of moving their office and anyone with an emergency should call 911 as they will not be open again until the first week in January.

I have reduced my intake of prednisone to a point at which I may be able to stretch it out to January (I think).  However my pain level has tripled.  I may wind up in the ER for Christmas.

These doctors couldn't care less.   

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Ford, you and I have similar situations...... I've been on prednisone for 7 years and would love to get off it.  A weaning process has begun.    If you cannot reach someone and are unable to stop by the office .... hoping SOMEONE is around and you can someone's cell phone # or talk to one of the staff ..... how about having the pharmacy try to get approval for one refill?     It's worth a try.   (Obviously I cannot mail you some of my stash).    There HAS to be a way to beat the bushes and shake the trees and get someone to give you a refill to hold you over.    Don't take no for an answer!    

If you can't get anyone on the phone, consider going to an ER (with prescription bottle in hand)  and getting a temporary dose to carry you over.   

BTW,  I researched biologics and pricing with my health insurance and it averaged somewhere around $3k a month for the weekly shots!   Yikes!    Well, since these are rather pricey and usually the patients aren't teenagers, there are some programs for help.    Anyway, right now I'm getting 6 months of Enbrel at no cost to me, and I'm at the 3 month mark.    I am seeing results and have no discernable side effects.    

Oh yeah ....... my rheumetologist gets lots of physician samples of all the biologics so I got my first few shots "free of charge" so to speak, so we could monitor for any obvious side effects before I was out of pocket any money.   (There are good doctors out there).

Hope anything above helps .......   or gives you some ideas ...

Tink

[LilacTree]

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@Tinkrbl44 wrote:

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@LilacTree wrote:

A little OT, but I recently asked my GP if she could increase my prednisone scrip (which she has been giving to me for years) by 2 mg to 10 mg instead of 8 mg because my pain is getting worse.  She refused and said I'd have to see a rheumatologist to get an increase.  BTW she does prescribe prednisone to patients for various reasons.

I went to the rheumatologist she referred me to and received the usual lecture about taking a biologic.  She would not prescribe the prednisone to me until I researched the two biologic meds she wrote down for me (both of which I am very familiar with).  So, I did that.  I researched them both thoroughly and came to the same conclusion.  I am used to the side effects of low dose prednisone, I do not want to chance the side effects of these other two meds.

I called her office and spoke to her assistant and asked for the prescription for prednisone again (I am almost out of pills by now).  She called me the next day and said I would have to see the rheumatologist first to "discuss" it.  However she has nothing available until January.  I told her I was going to run out of pills by then and she carefully re-read the doctor's instructions to her as to what she should tell me.  I said, what do I do if I run out?  I will wind up in the ER not only with pain but with possible adrenal gland failure!  She said I should call my GP and wished me to "have a nice day" and hung up.

I callled my GP's office and listened to a VM that said they are in the process of moving their office and anyone with an emergency should call 911 as they will not be open again until the first week in January.

I have reduced my intake of prednisone to a point at which I may be able to stretch it out to January (I think).  However my pain level has tripled.  I may wind up in the ER for Christmas.

These doctors couldn't care less.   

---

Ford, you and I have similar situations...... I've been on prednisone for 7 years and would love to get off it.  A weaning process has begun.    If you cannot reach someone and are unable to stop by the office .... hoping SOMEONE is around and you can someone's cell phone # or talk to one of the staff ..... how about having the pharmacy try to get approval for one refill?     It's worth a try.   (Obviously I cannot mail you some of my stash).    There HAS to be a way to beat the bushes and shake the trees and get someone to give you a refill to hold you over.    Don't take no for an answer!    

If you can't get anyone on the phone, consider going to an ER (with prescription bottle in hand)  and getting a temporary dose to carry you over.   

BTW,  I researched biologics and pricing with my health insurance and it averaged somewhere around $3k a month for the weekly shots!   Yikes!    Well, since these are rather pricey and usually the patients aren't teenagers, there are some programs for help.    Anyway, right now I'm getting 6 months of Enbrel at no cost to me, and I'm at the 3 month mark.    I am seeing results and have no discernable side effects.    

Oh yeah ....... my rheumetologist gets lots of physician samples of all the biologics so I got my first few shots "free of charge" so to speak, so we could monitor for any obvious side effects before I was out of pocket any money.   (There are good doctors out there).

Hope anything above helps .......   or gives you some ideas ...

Tink

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Thanks Tink.  I will try this.  I think there may be a big difference in our ages though.  Lowering my autoimmune response is sure to give me infections which I will not be able to fight.  That's the thing that scares me.

[Tinkrbl44]

@LilacTree   .... I thought of one more thing ..... if you have a long time pharmacist, explain the problem and say you cannot reach your MD for refills.    

They can call and check the recording and also review your long time prednisone usage ..... sometimes they will let you "borrow" some pills against your next refill (like a paycheck cash advance) .    It worked for me once when I didn't realize I was out until it was too late.

[LilacTree]

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@Tinkrbl44 wrote:

@LilacTree   .... I thought of one more thing ..... if you have a long time pharmacist, explain the problem and say you cannot reach your MD for refills.    

They can call and check the recording and also review your long time prednisone usage ..... sometimes they will let you "borrow" some pills against your next refill (like a paycheck cash advance) .    It worked for me once when I didn't realize I was out until it was too late.

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Another good idea Tink.  I'm so glad I posted this, as you have calmed me down.  Thank you so much.

[LilacTree]

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@Tinkrbl44 wrote:

I have told my MDs that I do not want any "new" drugs coming out ...... if it hasn't been on the market for at least 5 years (and hopefully has a generic), I don't want it.  

That way, they have to have time to work the bugs out, so to speak.

How many times do we see some new drug that's the greatest thing since sliced bread ...... and two years later the ambulance chaser attorneys are asking if you had a heart attack while taking this drug, call us now at 1-800-class action lawsuit.    

If a drug is still on the market after 5 years, they have had a chance to evaluate it's effectiveness on a larger patient population .... and determine if any "surprises" that revealed themselves.

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Tink, we are certainly on the same track when it comes to Big Pharma meds, especially the ones advertised on TV with the ridiculous names (how do they come up with these?).  Every week there's a new one now.  They must be making money hand over fist. 

The newest one with Danny Glover blows my mind.  He laughs and cries and then says because he's an actor, that's fine.  Then he talks about a "disease" wherein individuals laugh and cry with no control over it.  The med for that (I have forgotten the ridiculous name for it) has a side effect that can cause a brain disease which is "usually fatal." I've already spoken about it here . . . because it drives me nuts!!  I simply cannot imagine anyone taking that med unless their symptoms are so bad they might want to die. 

I'm going to post another question about my situation.  I think I'll post it in Community Chat.

[gardenman]

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@LilacTree wrote:

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@Tinkrbl44 wrote:

I have told my MDs that I do not want any "new" drugs coming out ...... if it hasn't been on the market for at least 5 years (and hopefully has a generic), I don't want it.  

That way, they have to have time to work the bugs out, so to speak.

How many times do we see some new drug that's the greatest thing since sliced bread ...... and two years later the ambulance chaser attorneys are asking if you had a heart attack while taking this drug, call us now at 1-800-class action lawsuit.    

If a drug is still on the market after 5 years, they have had a chance to evaluate it's effectiveness on a larger patient population .... and determine if any "surprises" that revealed themselves.

---

Tink, we are certainly on the same track when it comes to Big Pharma meds, especially the ones advertised on TV with the ridiculous names (how do they come up with these?).  Every week there's a new one now.  They must be making money hand over fist. 

The newest one with Danny Glover blows my mind.  He laughs and cries and then says because he's an actor, that's fine.  Then he talks about a "disease" wherein individuals laugh and cry with no control over it.  The med for that (I have forgotten the ridiculous name for it) has a side effect that can cause a brain disease which is "usually fatal." I've already spoken about it here . . . because it drives me nuts!!  I simply cannot imagine anyone taking that med unless their symptoms are so bad they might want to die. 

I'm going to post another question about my situation.  I think I'll post it in Community Chat.

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The new drug Danny Glover is promoting is called Nuedexta. It's currently approved for pseudobulbar affect, but neurologists are now recommending it for other issues resulting from brain damage caused by things like strokes. The primary active ingredient is dextromethorphan which is actually a common ingredient in cough syrup. They've found that it seems to help smooth out the cycles many brain damaged patients have. My mother was prescribed it today in the hopes that it will break the 36-50 hours of non-stop activity followed by 30-48 hours of sleeping she's done since her stroke in June of 2014. The use of Nuedexta for other conditions is expected to be approved within a month or two. 

I can't vouch for how effective it is, or will be, but there aren't a lot of good options out there for people who have had brain injuries. If Nuedexta can help them return to a more normal life, it'll be a miracle drug.

[tedEbear]

   Yesterday we picked my DHs Januvia, it was all of $2.77 RETAIL IT WAS $3,728.49.  Last month $26.51 RETAIL $457.99.  Can anyone explain that??????????----------tedEbear

[gardenman]

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@tedEbear wrote:

   Yesterday we picked my DHs Januvia, it was all of $2.77 RETAIL IT WAS $3,728.49.  Last month $26.51 RETAIL $457.99.  Can anyone explain that??????????----------tedEbear

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My best guess is that this is in some way related to the donut hole. As you may, or may not know, once your prescription drug costs hit a certain amount, you fall into the dount hole where you pay a lot more for prescription drugs. This year (2015) the total amount needed to be spent (by you and your insurer on prescription drugs) is $2,960 to fall into the donut hole. Once the out of pocket gets to $4700 you get out of the coverage gap/donut hole and back to being covered. Some drug companies and pharmacies seem to be manipulating prices a bit to either get people into the donut hole quicker, or speed them through it once in the donut hole. I don't know if that's what's happening in this case, but it could be. The good news is you only had to pay $2.77. A drug of my mother's went from $31.02 to over $305 since she fell into the donut hole. Be glad your price went down instead of up.