treatment suggestions

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Nisley2
Posts: 4
Joined: Wed Apr 22, 2020 8:38 pm

treatment suggestions

Post by Nisley2 »

Hello,
I am new to this site. I am running out of medications to take. I have been taking them for a good amount of years now. Currently I am on Carbidopa-Levo ER 50-200 Tab ,GABAPENTIN 600 MG, Entacapone 200mg and I recently started on Tramadol HCL 50mg. My dr. is not sure what is next since I have been on different medicaions for about thirty years now. I hope some one has some suggestions. I have restless legs any time day and night. I am 84 years old and really at my wits end with this problem. Have inquired about trials but no one seems to be running trials. I guess they dont think it is important enough but they don't know how this interrupts our lives.

Nisley2

Rustsmith
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Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: treatment suggestions

Post by Rustsmith »

Nisley2, I have lots of comments for you. But remember that I am not your doctor. Any changes that you make should be a decision between the two of you.

1. The fact that your doctor has you on Carbidopa-Levodopa is an indication that (s)he isn't very familiar with treating RLS. This medication should only be used intermittently because it very quickly leads to augmentation. Augmentation is a side effect of all of the dopamine meds that is specific to RLS, so many neurologists are not familiar with it.
2. Has your doctor done any blood work to check your iron levels, specifically ferritin? Your ferritin level should be over 100 if you are on a dopamine med, but that is difficult for many of us without some sort of iron supplement (or an iron IV treatment).
3. The fact that you are having RLS problems 24/7 is a very good indication that you are well into augmentation (even if you were taking a med other than carbidopa-levodopa). Take a look through our augmentation forum to learn more, especially about the challenges of getting off of dopamine meds.
4. Entacapone is not a medication that is used by any of the experts for RLS. It is used to extend the effect of carbidopa-levodopa, Rather than do this, the experts recommend the use of Mirapex or Requip. However, since you are very likely into augmentation, you need to get off of any type of dopamine med and stay off of them.
5. The combination of tramadol and gabapentin is a good one and will be very beneficial if you can convince your doctor to get you off of carbidopa-levodopa. My one suggestion here is to switch to tramadol ER so that you only have to remember to take one tramadol pill per day.
6. If you doctor is willing to learn, suggest that he watch the RLS Foundation's physician webinars, especially the first introductory one. These were done by the leading RLS experts around the US and were specifically designed as physician education.
7. I very strongly suspect that once you are off of carbidopa-levodopa, that the tramadol-gabapentin combination will be more than enough to control your RLS.
8. As for research, there was quite a bit going on until early this year. Much of it is basic research rather than clinical trials on humans, but they are out there. Unfortunately, Covid has put most of this research on hold until it is safe for most of us to be able to travel again. Until then, the researchers are having to work with animal models (mostly rats and mice) to try to learn exactly how RLS works.

If you have any more questions, please do not hesitate to ask. That is why we are here.
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.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: treatment suggestions

Post by stjohnh »

Steve has great suggestions. The Carbidopa-levo is a BIG problem.
Blessings,
Holland

Nisley2
Posts: 4
Joined: Wed Apr 22, 2020 8:38 pm

Re: treatment suggestions

Post by Nisley2 »

Thanks for the information . It was very interesting to find out that I am on the wrong medication. I will contact my dr. and discuss it so that I can go in the right direction. This was very important to me because I need some way to control my RLS. It is really getting me down since I am getting a lot of breakthroughs on my current medications.
NIsley2

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: treatment suggestions

Post by Rustsmith »

Don't be surprised if you get some sort of pushback from your doctor or that (s)he looks at you with a sort of blank stare. Many doctors are not familiar with how to treat RLS and rely upon treatment guides that are out of date. I think it would be safe to say that even most neurologists are in the dark when it comes to properly providing care for those of us with severe or very severe RLS. I have two different neurlogists. One who is local and treats my migraines and a second one who is an hour away who only treats my RLS. Fortunately, they are both on the same computer system, so they are reading each other's notes and the local one is using this as an opportunity to learn.

If your doctor gives you too much grief, that could be an indication that it is time to start looking for a different doctor, one who is either willing to learn or is already familiar with treating difficult cases of RLS.
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.

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

Re: treatment suggestions

Post by badnights »

Nisley2 wrote:
Fri Oct 09, 2020 6:24 pm
Thanks for the information . It was very interesting to find out that I am on the wrong medication. I will contact my dr. and discuss it so that I can go in the right direction. This was very important to me because I need some way to control my RLS. It is really getting me down since I am getting a lot of breakthroughs on my current medications.
NIsley2
It would be good if you could print out something to bring with you so that your doctor knows that you're getting your information from a reputable source. The RLS Foundation has a Bulletin for Healthcare Providers that gives at least the basic information like: Thou Shalt Not Prescribe Daily Levo-Carbidopa to RLS/WED Patients. You would also, I think , enjoy reading it. You can skip the Diagnosis section & go directly to Treatment. I feel there are problems with this publication but it is pretty good and easy to get hold of (follow the link in my signature, and scroll to the part where I talk about the RLS Foundation. You have to be a member to download it, which is unfortunate, but I still think you should get it - you can email the Foundation about getting a reduced or free membership (a scholarship) if you have insufficient resources).

Under Medications, highlight in the 2nd paragraph the 2nd-last sentence: " It can be quite effective acutely in treating RLS, but because it so readily causes augmentation, it is best used only for intermittent treatment." So for daily WED/RLS, another medication is needed.

Under Augmenation, she should read the whole section, carefully. The things for her to note are that you now have Severe Augmentation, not Mild. I don't like that they recommend switching to a long-acting DA because people do augment on the long-acting DAs too.

Finally she should read the subsection on Iron Deficiency starting on p14.

I also don't like that they don;t mention iron as a first therapy, nor the dangers of taking DAs when iron stores are low (hopefully teh Foundation will update this soon).
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.

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