Worried

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
click4it
Posts: 17
Joined: Fri Jun 26, 2015 7:27 am

Worried

Post by click4it »

I take hydrocodone 5mg once a day at night to help me with RLS and for chronic shoulder pain. Over the last year, there has been a ton of news about this and other medications being denied or harder to get from their doctor. So far my doc has allowed me to keep refilling every 30 days but now she went on leave until December. I am concerned that the covering docs will decide not to refill at some point. This is the only medication I take and its the only one that works for my RLS without any major side effects.

Does anyone else have this same concern?

ViewsAskew
Moderator
Posts: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Worried

Post by ViewsAskew »

I do. And, my guess is that others do, too.
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.

leggo_my_legs
Posts: 349
Joined: Sun Oct 16, 2016 12:29 am

Re: Worried

Post by leggo_my_legs »

Yes. Scores of people do. I'm very vocal about it whenever I see the "opioid crisis" mentioned.

Rustsmith
Moderator
Posts: 6466
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Worried

Post by Rustsmith »

Yes, I have even gone so far as hand deliver a letter to my congressman asking that he work to reduce the pressure being placed on doctors and pharmacies by the DEA and CDC.
Steve

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, and are not medical advice.

ViewsAskew
Moderator
Posts: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Worried

Post by ViewsAskew »

Was at a political training this weekend and heard someone mention it. They must have thought I was crazy when I interrupted and vented my opinion...
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.

yawny
Posts: 264
Joined: Sun Nov 08, 2015 4:20 pm

Re: Worried

Post by yawny »

I don't take opioids. After joining this discussion board and learning about RLS/WED, hearing people's stories, and learning how important the option of opioids is...I have a passionate opinion and deep concern about this non-prescribing trend. I think it's really illogical, and I worry about my fellow RLS sufferers.

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

Re: Worried

Post by badnights »

You're not alone, click4it! It's almost criminal that the only medication that relieves suffering and allows a person to be a productive member of society should be denied for reasons that are irrelevant to the actual situation of that person.

I recommend that you read as much as possible about WED/RLS, then print out a few key pamphlets or papers to show to the doctors that take over your care. The RLS Foundations' Medical Bulletin is a good choice, something that most doctors will respect. The trick is to be able to summarize the key points in the few minutes you have. Try to understand it as well as you can first, then highlight the lines that seem to pertain to your situation.

The Bulletin goes over treatment of three types of RLS/WED: intermittent, daily, and daily-refractory (meaning hard to treat, usually because the dopamine agonists and anti-convulsants don't work). See if you fall in the daily or the refractory category after reading more about them. A new doctor might want to know why you're not using a DA (like pramipexole, ropinirole, or the Neupro patch) or an anti-convulsant (like Horizant or Lyrica), so be prepared to answer those questions, or to try a medication or combination of medications that you haven't tried yet.

You should also be prepared to explain what augmentation is to your new doctor. It is something that does not happen to Parkinson's patients, only to WED/RLS patients, and it is absolutely horrendous since it consists of a worsening of symptoms. Many doctors (sadly) aren't aware of this, even though it seems such a basic fact of life for us.

I wish you the best of luck in the coming months!
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