Scare

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Post Reply
debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Scare

Post by debbluebird »

I had a brief scare yesterday. We called in our prescriptions last Thursday. We always call ahead to let the pharmacy know when we are coming since we live an hour away. That way they are usually able to get everything. It turned out that they didn't get the gabapentin shipment in. I started to panic.
So let me back track. I had called 3 weeks before this to check on my pills because I was out of town and was going to have to have my husband mail meds to me. The pharmacy told me that the earliest I could get those filled was the 30th. So last Thursday when I was going through my pills to see what had to be filled I found that I had a months worth of gabapentin. I had come home from the trip so I could go to the pharmacy. (That's another story) This confused me because I was remembering that the pharmacy said I could get them on the 30th. We decided to phone them in anyway for a pick up on Monday.
So now I am glad that I phoned them in and that I still have a months worth. We are to call in a couple of days to see if they got them. We will go get whatever they have.
It would be a nightmare if I couldn't get them, as you all know. I have my Methadone but I wouldn't be covered without the gabapentin.
Well, this was a long story, but else do I have to do.

QyX

Re: Scare

Post by QyX »

Gabapentin is at least here in Europe a very common drug with many different companies offering generics. I would expect that the situation in the U.S. is similar. So you might be able to get it from a different company in a smaller amount until your usual stuff is available again?

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Scare

Post by debbluebird »

I called today. It finally arrived on the truck. I'm sure I over reacted, but it was the thought of not being able to get it. We are going tomorrow.

Polar Bear
Moderator
Posts: 8798
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Scare

Post by Polar Bear »

I would have been the same, full panic, if I was left without one of my rls medications. I have a one hour round trip drive to pick up.

One of the reasons I don't move to a medical practice nearer to me is in case a new GP decided to 'adjust' my medications.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Scare

Post by ViewsAskew »

Yup - I also would have been in a panic!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Yankiwi
Posts: 548
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Scare

Post by Yankiwi »

I'm not panicking but I am paranoid about running out. Luckily my GP is very supportive. I have a phone consult lined up for next week to tweak my prescriptions.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Scare

Post by badnights »

It's amazing how my rational brain goes into retreat at even the thought that I might run out.

I have a bit of a stash right now because I was taking 6 mg most of the winter while my prescription was still for 9 mg. Last month when I saw my doc, I told her I was starting to use 9 mg more often again (the iron infusion is wearing off). Silly me, that reminded her that I must have a stash. She convinced me to accept a lowered prescription at 6 mg. I experience anxiety every time I think about it now. After all, things are getting worse, not better!

I made her assure me that I could get it raised back up to 9 mg with a phone call, but I wish I'd had her write it into my file, in case she drops dead or something (god forbid! but you never know).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Scare

Post by ViewsAskew »

badnights wrote:It's amazing how my rational brain goes into retreat at even the thought that I might run out.

I have a bit of a stash right now because I was taking 6 mg most of the winter while my prescription was still for 9 mg. Last month when I saw my doc, I told her I was starting to use 9 mg more often again (the iron infusion is wearing off). Silly me, that reminded her that I must have a stash. She convinced me to accept a lowered prescription at 6 mg. I experience anxiety every time I think about it now. After all, things are getting worse, not better!

I made her assure me that I could get it raised back up to 9 mg with a phone call, but I wish I'd had her write it into my file, in case she drops dead or something (god forbid! but you never know).
So frustrating. I do get that the possibility of opioid addiction is not something to treat lightly - unless the stats have changed, it is like 8 or so % of the population - so for every 8 people with an issue, 92 do not. NOT minimizing what those 8 go through! But, seems we have it backwards in how we monitor for it and help people. Preventing the 92 from access isn't helpful, especially when those people have not had issues in several years.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Scare

Post by badnights »

agreed.
Maybe she is thinking more along the lines that if I have a stash it could get stolen? Or maybe she is thinking I will share it around or sell it :evil:
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Scare

Post by ViewsAskew »

badnights wrote:agreed.
Maybe she is thinking more along the lines that if I have a stash it could get stolen? Or maybe she is thinking I will share it around or sell it :evil:
Or that someone might find out and accuse her of not being strict enough. Who knows. Whatever it is, she felt concerned enough to reduce it.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Scare

Post by badnights »

But she wouldn't have reduced it if I had kicked up more of a fuss. She's really truly a good partner with me, not dictatorial.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Scare

Post by ViewsAskew »

badnights wrote:But she wouldn't have reduced it if I had kicked up more of a fuss. She's really truly a good partner with me, not dictatorial.
I figure that is a pretty good thing - she is concerned and careful, while listening to you.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX

Re: Scare

Post by QyX »

badnights wrote:But she wouldn't have reduced it if I had kicked up more of a fuss. She's really truly a good partner with me, not dictatorial.
Maybe it is not such a bad thing for the moment because it is in your file that your dose was reduced at some point. So if there ever would be an investigation in your case by some higher authority, it would reflect that your doctor was not prescribing the same dose without reflecting if the same dose is still appropriate. A dose reduction - even if it is only temporary - will at least show, that there were serious attempts by the doctor to keep the dose as low as possible. It is maybe not a bad thing to have in your file when you life in the U.S. as long as you can back up to a higher dose if necessary.


My opioid dose is equivalent to roughly 30 - 40 mg of Hydromorphone, which is something I probably never would get in the U.S. There are also many doctors in Germany who are reluctant and overly careful with opioids and even the ones who prescribe opioids have historically always been way more sceptical than the U.S. We have never seen the over prescribing of opioids so when it is really serious, you will always find a doctor at some point who will look into the situation and prescribe the necessary dose. But my doctor also says that she has no other patient like me.

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Scare

Post by debbluebird »

QyX wrote:But my doctor also says that she has no other patient like me.
I love this statement. My Doctor says the same thing about me. I figure that if she gets other patients with RLS, she will now be experienced.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Scare

Post by badnights »

A dose reduction - even if it is only temporary - will at least show, that there were serious attempts by the doctor to keep the dose as low as possible.
You're right, that's a good point. I'm in Canada, so it's not as bad, but still there is oversight that she must have to think about. She tests me randomly.

I thought my dose was pretty low, because I was up at 18-21 mg at one point, so to be at 6-9 now is a big deal. But Dr. B said this is still a high dose!
Ann wrote:
QyX wrote: But my doctor also says that she has no other patient like me.
I love this statement. My Doctor says the same thing about me. I figure that if she gets other patients with RLS, she will now be experienced.
It's true, they do learn from us. The doctor who fired me told me proudly (before she fired me) that she had diagnosed WED/RLS in another patient. Who knows how many she has gone on to help (but knowing her - maybe not a lot of help - :lol: ). The internist who diagnosed me learned what augmentation was from me (but not how to treat it - he left town). I like my current doctor, she laughs and says she always learns something from me.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Post Reply