started methadone

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
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

No, softtail, they don't have anything for the PLMs. It seems that the dopamine agonists are first choice for them (I had primarily PLM and very mild RLS). Second choice are benzos.

But, just like RLS, nothing has been developed specifically for them. Heck, we don't even know what causes either of them! And, a large percentage of people who have them aren't bothered by them! That makes it even more complicated.

<sigh>
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.

softtail
Posts: 14
Joined: Fri Apr 03, 2009 6:26 am

for plms

Post by softtail »

I know what your saying, I had such good luck with both with the requip , when it was working , just wish it had not augmented so badly on me.

kept me sleeping and killed the leg kicks , so I woke up refreshed.
Just hope they (medical community ) doesn't give up on trying to find a cure, or at least alternative drugs that don't augment and give the same results.

you would think that since the dopamine agents, do regulate the rls and the Plms when they are working , it would give the researchers a head start on the right area to target for Rls relief.

one can only hope, and deal with the symptoms in the meantime.

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I think this info really has helped the researchers. It seems we have a few threads of research.

One thread is following the genes

One thread is following the dopamine/brain/iron connection

And another one is looking at dopamine related to the spinal cord.

Of course there are other smaller threads, too, but the major ones are looking at the brain, dopamine and iron and how that works independently and how it all ties together. Fortunately, we have some relentless researchers at Johns Hopkins, Emory and several other places, including some in Europe.

GO RESEARCHERS!
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.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

softtail,
have you ever heard of a drug holiday? On another rls message board there is a lady that Dr B (www.rlshelp.org) has instructed to switch from mirapex to requip when it stops working for her. He calls it a drug holiday, she will then stop mirapex and start requip for awhile and then can go back to mirapex and it will again help her rls at a much smaller dose.

here is the web addy for that message board, you might wish to read her post about this. Her name is Vera
http://health.groups.yahoo.com/group/rlssupport/

softtail
Posts: 14
Joined: Fri Apr 03, 2009 6:26 am

drug holiday

Post by softtail »

Mack, you bet, read everything I can about drug holidays, alternative medicine, etc.

My current doctor /rls specialist actually put me right back on requip after I was off it for 2 weeks, while getting what she calls the Clonazapan up to the titration level she wants it at for a 4 week period. ( which is 3 mg. per day.....75 mg in am and .75 mg in evening.

Along with the Clonazapan she had me add the requip back in at 1.5 mg per night. to handle my symptoms so I could sleep. She indicated she knows it will most likely augment angain, but by then the Clonazapan will be in place, and she only wants to introduce one new drug at a time.

for now , remarkably enough , it is working pretty well , with the one side effect of making me pretty drowsie thru the day. For now it is a fair trade off for getting some sleep which I was not getting before this.

I don't know her plan, till I see her again in june, but I will discuss multiple paths with her. If the Clonazapan is going to continue to leave me very drosie, I hope this will take a different turn. Also, she may add in Wellbutrin for depression.

I was on mirapex once, and it too augmented so I stopped that, went for a spell with nothing about 5 years ago , then saw the add for requip, and got my other doctor to go for that. worked for 3 plus years till augmentation got so bad I had to quit ( sort of since she still has me taking some.)

Only time will tell what concoction I will end up with. It would be great if I could take a drug holiday like 3 to 6 months from the requip , then try it again , with out any other drugs, and see how long I could tolerate it before the augmentation returned. It really was quite a miracle drug for me while it worked, gave me energy I had not had previously.

I believe the doc is going to introduce some of the opiates next , and get rid of the requip, to see how that works, but who knows.

thanks for any and all suggestions everyone. and good luck back at ya with your own dealings.

I

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I think it's Dr Elaty of Florida who recommends the switching from Requip to Mirapex.

It's certainly worked for that person, but some of us augment on more than one and we're just plain out of luck!
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.

softtail
Posts: 14
Joined: Fri Apr 03, 2009 6:26 am

requip augmentation

Post by softtail »

I augmented on the mirapex when I first tried it. It also worked great for a period of time till the augmentation.

The time it took to augment on the requip took alot longer , years, than the mirapex did, so you may be right , jumping back to the mirapex could give me a longer window before this happens,

the nervous part is or my question, did she go directly from the mirapex to the requip, then back ,or did she have to go thru the withdrawel period first before jumping, that can be quite a trip.

I am waiting to be accepted in the yahoo community before I can view the post you sent me to. thanks
John

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

She just switches back and forth directly and has for many years.

Remember, you need about 2-3 times of REquip as Mirapex. So, if you are taking .75 of Requip (just an example) you'd take .25 of Mirapex.

BUT - she switches before there are any increases. BY doing so, she's kept her dose at some ridiculously low amount for 5 of more years.

So, for the Mirapex, I'd take 1/3 of the Requip dose that you took BEFORE you started needing to increase it. Maybe that was 1 mg and now you are at 2 mg. So, try taking .33 mg of Mirapex (at close as you can - this isn't exact). If it is not enough, you can always increase it.

If at ANY time you feel that the RLS is crazy from augmentation - really strong, hard, extra wicked, moved to body parts, it would likely mean you'll not be able to tolerate the Mirapex.
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.

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

I just found out I have PLMD as well. My RLS is just getting worse and worse at a breakneck speed. I would have night cramps once in a while. Now I have crippling ones every night. I wake up screaming from the pain.

BTW, I posted on another thread about taking cold baths for the PLMD. That's what the doctor told me to do today.

I also cannot walk up stairs or hills without my legs burning. This is the latest RLS symptom that started a couple of weeks ago.

I am still not on any medications. I tried two that made me very depressed. I just got a prescription for Mirepax.

Dale

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Having burning legs while walking up stairs or hills is not RLS. Movement should help the RLS symptoms. Please push your doctor to figure out what's going on with that. It sounds like a circulation issue.

Cramps is not a part of RLS either, although moving the legs for relief might cause them. Have you tried taking calcium and magnesium, or tonic water? I've found that a little bit of tonic water stops my leg cramps on those rare occasions when I start having them.
Susan

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Dale, I'd also be worried that something else is going on.

I'm not saying you don't have RLS, but that it sounds to me as if there is more than one thing going on.

RLS doesn't cause painful cramps. As Susan said, too, it shouldn't cause pain when walking - even up stairs, the movement helps it.

We've had several people over the years find out that they had BOTH restless legs AND peripheral neuropathy or another type of neuropathy.
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.

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

Dale,

you need to get checked out ASAP, as others have said.. Some of these symptoms clearly do not sound like RLS at all, and you may have another condition that is undiagnosed and by the sounds of it, potentially crippling if left untreated.

softtail
Posts: 14
Joined: Fri Apr 03, 2009 6:26 am

Dale , I agree

Post by softtail »

no doubdt , you are hearing from those of us who really know what rls is ,and if you have it , its buried under some other condition that is going on.

Zach is right , get your self to a doctor that can tell the difference. and let us know how you make out.

note to moderator. can't thank you enough for the mirapex /requip advice , will definitely discuss with my doctor on the visit with her on june 2nd.

got to get away from this daytime drowsiness, if I can.

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Hope it helps as an option, softtail.
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.

Aiken
Posts: 880
Joined: Thu Jul 14, 2005 6:53 am

Post by Aiken »

Nothing to add, except another vote for having it checked out, as it does not sound like (just) RLS.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Post Reply