Are there any other drug options out there???

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.

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Anonymous

Are there any other drug options out there???

Post by Anonymous »

I have had restless legs for 8 years - in arms also for the last 4. Symptoms are there in night and daytime hours. I had a family doctor who originally put me on oxycontin (1 - 10 mg in morning and one in evening) for them which worked wonderful but after watching news - I asked for something else and he gave me vicoprofen - 3 a day. I have been on this mostly for the last 4 years with intermittent drug holidays (where my life goes to shambles) When the tolerance began building up he put me on Ultram for a month or two and then back to vicoprofen. During that time I did try neurontin (did not help) and mirapex. The side effects of mirapex were HORRID! I was in a haze, I went crazy in the day too because it didn't help the arms and legs and I couldn't stand taking them in the day because of the drowsiness. I also had TERRIBLE nightmares and depression that resulted in crying jags and so forth. I stopped it. About a year ago I had to change family doctors because the other one left the state. The new one would not let me go back and forth between Ultram and with this new doctor, I tried effexor, prozac and elavil - all with no success. So he kept giving me Vicoprofen I now take 2 tablets 3 times a day but trying to cut them down to 4 a day does not stop the symptoms. This has led me to seeing two neurologists that are on this site. One of them suggested I try Siminet but said the side effects would be the same as the mirapex. FORGET That!!! The other says he will try between 9 and 10 different parkinson meds and anti seizure meds that are all suppose to be so safe - I'll have no worries. My question is this. I have been on and off narcotics for holidays and am aware of the addiction problems with these drugs but the 2 other classifications of drugs (that are not sleep aids) parkinsons and anti seizure seem to me to be the equilivant of jumping from the frying pan into the fire. Does anyone here have any suggestions - of a type/class of drug that can be tried to help these symptoms that do not increase dopamine? I've only seen a very few suggestions of provigil and ADD drugs (ie. ritalin) but of the ones I've seen there has been some success - the provigil especialy seemed to have very little side effects... I'd love to hear any suggestions! I am fully disgusted that neurologists will commonly prescribe these parkinson's medications to the hilt - "trial and error" they say while my life I know will be a living hell... but they have no other suggestions - that is if you want to stay out of the narcotics and anti seisure lines as well...seems to me if we are not certain of the causes, why are the cures so limited and why do we keep perscribing all of these dopamine increasers - with all of these side effects - so willingly when there are other classes of drugs - safer drugs I'd hope - that can at least be considered??? Why am I being told I"ve got to try a slew of drugs in the same class (dopamine increase) /anti seisure when one from each of them didn't work? I'm looking for a better answer - I've even tried contacting a Chinese website as this condition has been around since man has - but no answer yet - we've treated it before the days of mirapex (such a new drug - ...) I'd like to know if anyone here knows how! I take iron - the only thing each neurologist was 100% certain there has been proof of as being a cause - and I've had the blood tests to be sure I'm not anemic. I also have lupus... aside from that I'm tired of having people accuse me of "making up" the conditon to get narcotics...I'm at wits end with the condition and the options - Any imput would be great!

ViewsAskew
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Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Dear afl, in a word, no.

They have just recently identified some of why RLS happens. Up until recently, no one took this very seriously. Up until this week, there were no drugs specifically approved for RLS. This week, Requip, a dopamine agonist, was approved.

The reason the docs push the DAs is because they know, at least in primary cases of RLS, that the cause is an inability to uptake dopamine in the brain. This inability is caused because the cells in that part of the brain don't get enough iron and can't work correctly. Hence the iron and the dopamine. And, at this point, most of the recent studies are about the DAs, so it's what the doctors (that are current) know about.

But, as you've pointed out, these do not work for everyone. In fact, none of the drug classes used to treat RLS work for everyone. There are many people on this board that can't take the DAs. If they don't work and you have RLS that you can't treat through non-drug means (hot baths, heating pads, ice packs, vitamins, etc.), then you only have 3 drug classes left to try. Anti-seizure, opioids, and benzos.

There are studies that show that opioids do not lead to addiction in RLS patients unless there is a prior disposition to addiction. Many people have been on them for 15 years or longer and they have no problems. Taking a drug holiday between Ultram and an opioid is a perfectly acceptable option. But many doctors are too afraid and won't do it.

It took me 20 years to go to a doctor and in three years I've plowed through eight of them. I just left the third neuro over this very issue and went to a primary care. I chose one that I have to drive 60 miles one way to see. I printed out everything I could from the rlshelp.org site, from the John Hopkins site, from here, etc. and I gave it all to him and explained what I needed. I told him I needed a partner, someone to work with me. I agreed to sign a paper that I would not increase me drug doses without talking to him first. And he gave me the opioids.

I hope you don't have to go through 8 doctors. But you might. Many of use have fired multiple docs. The time, energy and money I've spent on new docs and new drugs that don't work is staggering. I wish I had a better solution, but I don't.

Ann

bambam

RLS patch

Post by bambam »

Afl,

Based on your post, you may be interested to learn that a patch is being researched for RLS. I think it is a dopamine agonist, but it can be worn through the day and night, and maybe the different delivery will change the side effect profile for the better. We will have to wait and see. It is still under development.

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Dear Afl,

This website has been a god send for me, and it is those like Ann that keep me searching for the health care I need. I have an appt with two new doctors.

Just recently my husband told me he thought I had RLS after hearing a radio program on it. I went to my most recent physician and she prescribed Elavil which put me into a full body explosion of RLS. Going back the next day, and practically every day since, I do not think she believes me when I describe my problems and is tired of talking to me. That is why I have two new drs to interview!

Please know that we are all here to listen, there is a wealth of information on this site and from the women such as Ann that you can arm yourself with.

Keeping you in my thoughts and prayers... Healing light sent your way, Hazel

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