Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group just venting, know i should consider myself lucky.

as many of you know, i've been on LDN since september. he wrote a prescription for a few months, renewed it, fairly straight forward the first time. then last month, after my calling twice and the pharmacy faxing twice, finally got it, but only for one month, though i pleaded for 2 renewals to last me through to my appointment in june so we didn't have to go through all this effort every month. well, this month even more frustrating. renewed it with only 1 phone call from me and 1 fax from the pharmacy, that's the good part. but this time i have to drive there to pick up the prescription (an hour out of my life), then drive it to the pharmacy (another hour out of my life), then go pick up the prescription another day (another hour). not really sure how i'm going to find 2 hours tomorrow to miss work to do this, but i need the LDN. then will need to go back to the pharmacy on monday to pick it up, which i was planning to do. since i have to get the LDN at a compounding pharmacy, and only 2 in the area, and the other one even further away, that's why its so time consuming. and the doctor is also on the other side of town, not many rheumies accepting patients around here. anyway, the nurse told me that he said i had to pick it up because of the kind of controlled substance it is, i tried to tell her that it has been called in twice already, so if he could do it then, then why not now? also told her its not a narcotic. i wonder if it really is a controlled substance, i didn't think it was, but maybe it is and he didn't realize it for the last 8 months that he was prescribing it, i'll have to look that up. i just hope they gave it to me with a renewal so i don't have to go through this again next month before i see him in june.

i know i should just be grateful that he is allowing me to use it, know most doctors are leery of prescribing it "off label" like this. but it just gets so frustrating that doctors don't seem to care that we have work and other obligations. all this medical stuff is like having a second full time job.

thanks for listening,

for those of you getting LDN, do you have to get the prescription in person, or can it be called in / faxed in?

It's still a hassle. Jobs are important, especially when it's our job providing the medical insurance. I don't know if LDN is a controlled substance....that would be interesting to know.

well, i just googled and found that, as i suspected, naltrexone is not a controlled substance.

i will need to talk to this doctor in june when i see him. i just feel like he begrudgingly prescribed the LDN because i held him to his promise that he'd help me and he doesn't feel comfortable prescribing anything "unsafe".

but i had no idea getting the prescription renewed would be so frustrating every month. at least he didn't start doing this when my back was so bad i couldn't drive anywhere.........

i know, at least he is prescribing it, even if its begrudgingly..........

Hi sue.
I have not started me LDN yet as I just dont have the money.
But I already contacted the compound pharmacy and I only have to fax in the script and they will start making it then post in the original signed. When they recieve the original they post to my home address.
And I get 100tabs at a time. A lot easier.

Hope you can get this sorted out. What a pain.

you know, i wouldn't even mind if i really did have to go pick up the prescription, i had to do that for lyrica, because it is a class V controlled substance for the low chance of addiction.

i just don't like to be "lied" to. maybe the word lie is too harsh of a word, but when i asked the nurse why it couldn't just be faxed in to the pharmacy like they had done twice before, including last month, she said they had no record of that. how could they not have a record of that, i know that can't be the truth, i know they have to keep these kinds of records, don't they?

99.99% sure that naltrexone not a controlled substance, and found this interesting link with a good list of drugs that are. though maybe missing some of the newest ones (lyrica's not on there for instance). but naltrexone links specifically state that it is NOT a controlled substance. does the doctor really think its a controlled substance, and when i questioned that, letting the nurse know what an inconvenience it will be to take off work for 1-2 hours just to get this done, he could have at least looked it up rather than just telling her that i had to come pick it up.

http://en.wikipedia.org/wiki/Controlled_Substances_Act

Sue I must say that is frustrating. My doc fax my scripts to the Pharmacy except my narcotics, but that is local. Still haven't had the time to investigate this LDN yet.
Cindy

Sue, you don't need a prescription to get Naltrexone...I've been ordering it online for years, just look up the websites online order it and then mix it accordingly.

So sorry to hear that, I feel that sometimes Len needs a personal assistant to arrange all the appointments, and pick-up of meds etc. The compounding pharmacy were able to make up Len's LDN without seeing script as he had ordered there before- he could then show them when he came to collect it. I hope you do get your renewal. When you are sore everything is a mission- doesn't the nurse at pharmacy understand that. I mean all that driving and parking/ walking and taking time from work. Maybe you should get it sent from the US- not sure how much more that would cost.

Sorry to hear you cant get any LDN yet, with AS and your busy life you have enough to worry about- it's not fair that you must also save up for medication that will help you.

good news: as difficult as the doctor was making it, the pharmacy is just wonderful. i love my pharmacist didn't know that the rheumy office closes at 1:20 pm on fridays so when i was finally able to break from work to drive over there, arriving around 2:30 pm, they were closed. not sure exactly how to proceed, i called my pharmacist. like you stated, my pharmacist knows me, have a track record, so he's going to prepare the med tomorrow and when i drop the script off on monday, he'll give me the drug at the same time. some people just go out of their ways to make others' lives more pleasant!