Is your DA causing augmentation?

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.
ViewsAskew
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Location: Chicago

Re: Is your DA causing augmentation?

Postby ViewsAskew » Sun Jun 03, 2018 4:40 am

Bronwen wrote:Betty, I now tell people that I have Willis Ekbom disease and that it is a progressive neurodegenerative condition of the brain.
That shuts them all up pretty damn quick, as they now fear you are about to go barmy on them.


:thumbup:
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
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Re: Is your DA causing augmentation?

Postby badnights » Mon Jun 04, 2018 5:07 am

I do like the WED name sooo much better. I have trouble - can't - spread some of the Foundation's materials because I have such a strong negative reaction to the old name. I actually cannot bring myself to use it. I've tried. I want to raise awareness in the worst way, but when I try to post something from the Foundation on my facebook page, for example, I actually can't do it. Sometimes I get as far as hitting Submit, but then I delete it right away. Just because of the name they use. :(
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.

peanut1
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Joined: Sat Jun 04, 2011 8:06 am

Re: Is your DA causing augmentation?

Postby peanut1 » Wed Oct 17, 2018 10:46 pm

I guess I'm one weird case. NONE of the dopamine antagonoists helped my RLS and Requip even made it worse. The others I got very ill on. Neupro wasn't effective after 3 nights.

Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Wed Oct 17, 2018 10:57 pm

Neupro wasn't effective after 3 nights.


There are some people who augment on the dopamine agonists after just a couple of days, so it looks like you might be one of them.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

sleeplessEileen
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Joined: Sat Dec 08, 2018 1:18 pm

Re: Is your DA causing augmentation?

Postby sleeplessEileen » Sun Dec 09, 2018 5:22 pm

Hello again, this is sleepless Eileen. I joined this discussion board a couple of days ago (December 7, 2018) and a nice man by the name of "Steve" suggested I let everyone know where I am located in case someone knows of a doctor who can/will help me with Severe Refractory RLS. I live in southern Indiana, Sellersburg to be more precise. I am just about 4 miles from Louisville, KY. My insurance only covers Drs. in Indiana, however, I am so desperate at this point I am willing to travel anywhere, even if I have to walk! I have been dealing with RLS for almost 10 years now. My Dr. at the time put me on requip, it worked great for a couple of years. No symptoms at night, I could even take a nap on Sundays if I wanted, wow! Then, I first started noticing I could no longer take a Sunday nap...I also had to start taking my medication earlier so I didn't flip and flop for an hour or more before I fell asleep and of course I started waking up earlier with the creepy sensations. So, next my Dr. put me on .5 pramixepole, again it worked great for a couple of years. I then started having unexplained whole body pain, no fibromyalgia, no arthritis nothing to indicate why this was happening other than I worked in construction, yes don't laugh, old woman hands on construction. I had to go to a pain clinic to receive Hydrocodone. I took 10/325 4 times a day for a little over a year. No problems, no RLS symptoms. I did however hate going to that pain clinic because it just felt...sleezy? I know that's not nice but it did. I changed Drs. and I absolutely loved this Dr., he treated me with the respect and care that is very hard to find today. I started to notice the return of my RLS symptoms at the .5 and my Dr. increased the dose to 1mg all the while continuing my hydrocodone at the same dosage. Around June of this year I started noticing my my RLS symptoms returning even though it hadn't been very long (a few months) since my Dr. had increased the pramixepole. I was to have a 3 month check up at the end of August (urine screen, how are you, etc.) I was going to talk to my Dr. about the RLS symptoms returning. Sadly, my Dr. had passed away on August 10, 2018. My life has been turned upside down since then. No doctors will write prescriptions for hydrocodone, especially since it is not a "FDA" approved treatemt for RLS. I also have ADHD and could not get that medication either. First new doctor told me she would not write any of my prescriptions and that I needed to see a psychiatrist, a pain management clinic and a sleep study doctor. Ok, sleep study doctor asked what medications I was taking and why, before I could even get the word "hydrocodone" out he yells at me "I am not writting you a prescription for that and if that's why you are here you can forget it"! I was stunned, I hadn't asked him for anything! I was just answering his question. Next, a Neurologist 100 miles a way no less. Same thing from him. Oh, he did want to put me on a great big dose of pramixepole!!! No thanks Dr., have a great day. Just wow! I am so depressed...how I would love to just crawl in bed (or a hole) and pull the sheets (or dirt) over my head and sleep until this all goes away but wait, that's right...I have RLS. I can't sleep, I can't crawl in bed or a hole until this passes because I can't even sit still at all.

Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Sun Dec 09, 2018 6:51 pm

Eileen, I wish that you hadn't needed to find us but I am glad that you did. I also wish that you tale of woe wasn't unusual, but it is one that many of us have been through ourselves.

Obviously you need to find a doctor who is capable and willing to treat your RLS. One option is to travel to one of the RLS Foundation's Quality Care Centers. The closest ones to you are probably in Nashville, TN and Atlanta. You can find the full list at https://www.rls.org/treatment/quality-care-centers

Another option is to start calling every neurologist that your insurance covers, concentrating on any who list movement disorders as a specialty. The neurology department at a state medical school or teaching hospital would be a good place to start. Ask to speak with a nurse and then ask two questions 1) does the doctor have experience treating augmented RLS and 2) is the doctor willing to prescribe an opioid for the treatment of chronic conditions such as refractory RLS. Obviously an answer other than an assured Yes to both is far warning that the doctor is not a good candidate. If you find a doctor who has experience treating severe RLS, be prepared for a wait. Demand is such that it is not unusual to have to wait several months for an appointment, especially a new patient appointment.

A final option would be to find a GP who would be willing to learn and to work with you. There is a great book, "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, et al. It costs about $35 on Amazon. It was written for doctors, but is at a level that you will be able to understand. Many of us have used it to educate ourselves and our doctors. Simply highlight a couple of sections relevant to your situation and show it to the doctor. Finally (and this might help with the pain management folks), there is a paper that was published at the Mayo Clinic earlier this year titled "Appropriate use of Opioids for the Treatment of Refractory Restless Legs Syndrome", https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

sleeplessEileen
Posts: 2
Joined: Sat Dec 08, 2018 1:18 pm

Re: Is your DA causing augmentation?

Postby sleeplessEileen » Mon Dec 10, 2018 2:26 pm

Thank you so much for the good advice, but more so for just being someone who doesn't treat me like I'm crazy or just making it up! I am going to purchase the book you suggested today. I have a Dr. appointment with my GP tomorrow at 11 am. He is a very young Dr. just recently out of school. He has been very compasionate to my delima but I just don't think he has ever dealt with anyone in my situation yet. However, at my last visit with him which was 2 weeks ago I did leave him a copy of the above article you mentioned from the Mayo Clinic. I asked him to please read it. I am also going to ask him if he would be interested in monitoring me for the National Opiod RLS Registry. Who knows, maybe he will become a great advocate for people like me who have no where else to turn in our community. Thank you again so much! :)


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