Suggestions on Combinations, or other alternatives?

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.
stockton2malone2
Posts: 11
Joined: Fri Dec 14, 2018 3:11 pm

Suggestions on Combinations, or other alternatives?

Postby stockton2malone2 » Wed Mar 06, 2019 6:05 pm

My RLS has gotten to the point that I can barely take care of myself and my dogs even w/o working, so next month I'm moving to live with family.

For several years Mirapex worked well until it augmented. The other two dopamine agonists don't work now either.
The gabapentin type meds leave me horribly depressed to the point of not being able to function.
Benzos don't seem to work past a few weeks
Opiods make my heart and mind race, and just weren't very effective for me.

I've been using medical marijuana for the last year or so, but it gets less and less effective, and the long term side effects are a problem. At this point it lets me get some sleep, but it's not good sleep.

Should I be looking at combinations of medications? Are there any other options people have had success with?

There is a lot less research on these, but the only things I've been able to find I haven't tried are valproic acid, oxcarbazepine, topiramate, lamotrigine, caramazepine. Has anyone tried any of these?



I used to take venlafaxine, but got off it ~6months ago since it can be problematic for RLS, and now take Wellbutrin XL 300mg.

Both my iron levels, vitamin D, TSH, and hemoglobin a1c are all normal.
I've tried Mirapex, Ropinirole, Neupro, Lyrica, Horizant, Gabapentin, Clonazepam, Clonidine, Marijuana, Alprazalom, and Oxycodone. At the very best I'm able to get to sleep past the RLS, but the quality is still garbage.
Both my half brothers and my mom sleep weird, and I've had RLS/PLMD since I was a kid. Genetics seem to be the primary culprit.

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

Re: Suggestions on Combinations, or other alternatives?

Postby stjohnh » Wed Mar 06, 2019 7:39 pm

stockton2malone2 wrote:
Should I be looking at combinations of medications? Are there any other options people have had success with? ...


stockton2malone2:

Absolutely there are alternatives and the quickest one for you is likely using a combination at low doses of all those, Such as pramipexole 0.125mg, a low dose opioid, gabapentin and cannabis. The advantage of this is that low doses have many fewer problems with side effects but the beneficial aspects are additive. Also, be aware that side effects from opioids are quite variable. You might very well have a good response to an opioid that you have not tried.

On another note, the International Restless Legs Syndrome Study group recently released a consensus guideline paper on iron treatment for RLS. IV iron therapy has been elevated from a "last resort attempt" to First Line Therapy, meaning it should be one of the first treatments doctors should try, not one of the last. You should definitely consider trying to get IV Iron treatments. Side effects are nearly zero, and it is the only treatment that works on the underlying problem: Brain Iron Deficiency. BID has no relation to the iron level in your blood. Most people with RLS have low brain iron, but normal blood iron. Unfortunately, most doctors are not aware of this, and if you wish to pursue it, you will have to educate your doctor.
Blessings,
Holland

Polar Bear
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Location: N. Ireland

Re: Suggestions on Combinations, or other alternatives?

Postby Polar Bear » Wed Mar 06, 2019 7:49 pm

A combination of medications is without doubt worth trying.
For a long time I used the combination of ropinerole and codeine phosphate. At present I am trying to reduce the ropinerole and my combination has changed to Pregabalin/ropinerole/codeine.

However, it is definitely worth seeing your doctor about the IV Iron Treatment.
You say your iron levels are normal it is your serum ferritin that needs to be checked. And always get the reading, don't accept someone telling you it is 'normal'. Normal to most folks can be 20, us sufferers of RLS need much more... 75/100 , some folks need higher than that.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Location: Los Angeles

Re: Suggestions on Combinations, or other alternatives?

Postby ViewsAskew » Wed Mar 06, 2019 11:19 pm

Is there any way you can get to an RLS quality care center? Many of us have tried untold combinations - they tend to be specific to the person, though. A good doctor would be able to help you figure out how to try them and what to try.
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
Posts: 436
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Suggestions on Combinations, or other alternatives?

Postby QyX » Sat Mar 09, 2019 11:13 pm

How did Oxycodone work out for you in the past? Did it help with your RLS symptoms but you still were not able to sleep because some effects of the Oxycodone kept your awake?

With your history you will for sure need a combination of different medications.

Maybe you can provide some more detail how various drugs affected you. Especially Lyrica, Gabapentin, Horizant, Cannabis & Clonazepam.

I have been using Oxcarbazepine and even Carbamazepine in the past. Carbamazepine was super effective at the beginning and I was able to stop opioids completely for a few weeks. With Carbamazepine I had my best run so far ... until after a few years the Carbamazepine turned against me. I wrote about it here in the forum in my "Pharma diary".

After Carbamazepine stopped working I switched to Oxcarbazepine. It does not have the nasty side effects of Carbamazepine but it is also not as effective.

Now I am taking a combination of opioids, Cannabis and Oxcarbazepine. My sleep improved since I added Cannabis but atm I am not fully where I want or need to be.

It is not surprise that you ran into tolerance effects with the Cannabis. Alone Cannabis is just not potent enough to treat all the various RLS symptoms.

You might wanna talk with your doctor and check which opioids are the least stimulating in your situation. For me, Oxycodone was highly stimulating and Hydromorphone and the old Morphine worked much better for me. But to due tolerance issues I know take a combination of these three opioids, together with Cannabis at night and Oxcarbazepine in the morning and at night.

You are not alone with your problems and I am kinda in a similar situation and trying to fight my way back into life.

And as others have said: look into IV iron treatment. In some cases it is life changer and a lot of people at least experience a huge improvement of their symptoms.


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