Are their meds for rls that can be used as needed

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Rcure
Posts: 33
Joined: Sat May 28, 2016 2:39 pm

Are their meds for rls that can be used as needed

Post by Rcure »

Are their meds for rls that can be used as needed? I'm struggling with needing to go back on meds for my rls. I'm no stranger to antidepressant and I'm afraid to become reliant on yet another med.(I've explored coming of antidepressants to relive my rls) I'm borderline going crazy over this and feel if I can get some relief when it gets really bad I can tough through it. I would be willing to try a long acting med with little side effect and doesn't cause augmentation but my dr doesn't know what he is doing and there doesn't seem to be much support in my area. Can someone also recommend a good med that may be better tolerated that I can discuss with my dr?

Rustsmith
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Re: Are their meds for rls that can be used as needed

Post by Rustsmith »

Your best bet if you want to become informed and be able to share with your doctor is to get a copy of the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. It is available on Amazon for about $25. Although the book is intended for physicians, it is written at a level that can be understood by patients as well. Many of us have copies that we use with our doctors. We mark specific areas and then share that section with the doctor. Others have given a copy to their doctor if he/she seems interested in learning more about RLS.

All of the RLS medications have the potential for causing unwanted side effects. If you are just getting started, you might want to try gabapentin. It does not cause augmentation, but one of the side effects can be depression. Lyrica is a similar drug and also has the potential for causing depression. However, don't let this stop you from giving them a try. We are all different and either one might work well for you. Your doctor might also want you to consider rotigatine (Neupro). Although it is a dopamine agonist, the timed release nature of the skin patch is thought to extend the time before augmentation might occur. The biggest complaint about a side effect of Neupro is skin irritation at the application site, which changes daily and the suggested site rotation allows 2 weeks before returning to any one site.

Finally, you might want to explore the legaility of kratom in your state. A number of our members find that it helps relieve many of the RLS symptoms. If you do a search on kratom you will find quite a bit, including suggested strains, suppliers and the best way to take it. Finally, if you live in a state where medical marijuana is available, that is also something that you should look into as it has helped a number of us.
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
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Re: Are their meds for rls that can be used as needed

Post by ViewsAskew »

In my opinion, it's a crap shoot. Everything works for some people, nothing works for everyone, and side effects can ruin the situation even when the drugs do work.

If I could start over again, here is what I would do.

1. Get my iron up. If my ferritin was under 100, I'd try to find a way to get a doctor to prescribe an infusion. If over 100, I'd still take iron until my ferritin was 250 to 300. You never know how much it might help.

2. Verify there wasn't another cause -anemia, celiac, pregnancy, lack of vitamin D or other minerals in the body, MS, kidney failure, and many more. If any of these were present, deal with them first.

3. First try the things that are the least likely to cause side effects. Kratom is a possibility if you live in a state where it is legal. MM, medial marijuana, is a possibility, too, but harder to get if you are not in a state where it is available.

4. If none of this works or isn't available and you only need something for 3-4 days a week (never take it more!), consider carbidopa/levadopa, in the US called Sinemet. This works amazingly fast, but WILL lead to augmentation if you take it daily. Never take a high dose, never take it more than 3-4 days a week. Tramadol might be a good option for someone who needed it a few times a week, too, but doubt you'd get a script for it for this. It definitely will cause dependence if you take it regularly. You could try alternating between these, I suppose, too.

5. Past those, everything else gets more complicated. As Steve noted, you could try the alpha-2-delta ligand drugs - gabapentin, gabapentin encarbil, or pregabalin. All can have a host of side effects including depression and suicide ideation, but do not cause augmentation. Many people take them just fine...others of us, not so much. You just have a try and find out. Once you get to this point, there isn't anything that doesn't have the possibility of side effects.

6. You wanted to avoid augmentation, so there are only two other options. First, you could take a dopamine agonist for part of the week and use another drug the rest of it. Or try the DA for two weeks, then take a week off. As long as you do not take the DA for too long, you are unlikely to augment. The problem is what to take when you are taking a break. Opioids work well, but are hard to get. If the alpha-2 delta ligands work you likely wouldn't need to take a DA, but you could use them for your week off, 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.

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

Re: Are their meds for rls that can be used as needed

Post by Yankiwi »

Sinemet worked well for me for a while until I took it every day and augmented. It was great for car rides or concerts because it works so fast. I guess the danger of taking more than we should is that it works—until it doesn't and causes lots of problems.

badnights
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Re: Are their meds for rls that can be used as needed

Post by badnights »

I can't add much to the previous responses.

Sinemet/levo-carbidopa is the obvious answer for part-time use. It works like magic, but therein lies the danger. You do not ever want to take it every day - I never take it more than 3 days in a row and hardly ever more than 2 days in a row, and I take as many days off as I've been on. It is very easy to augment on Sinemet.

The alpha-2-delta meds are harder to take part-time - they take a while to build up in your body and to deplete again, taking then stopping them repeatedly might throw you out of whack in unpleasant ways. Also they're not very effective in my opinion.

The DAs would work too, for part-time use. There is less danger of augmentation than with Sinemet, like Ann said a week on shouldn't be a problem.

Do the iron thing!! It's the one simplest thing that can actually improve symptoms. Some of us need ferritin over 200, so the "normal" values are sort of meaningless. Ask your doctor if there'd be any harm in taking iron supplements - get your ferritin checked first, not just the other iron numbers...
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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