Augmentation

[frustratedinga]

I recently joined the group. I feel very fortunate that I have because I now know that all the doctors I have seen are the ones that are crazy and not myself.

I have been on clonazepam since 94. The dosage is now up to 2mg a night, which means I must get up at least 1 hour earlier than normal just to shake the effects. I have tried Sinimet (horrible sickness followed) and Requip (same result but not as bad). However, in the last year, my RLS is 24/7. I cannot go to the movies, out to dinner, or to watch my son perform wihtout having to get up and leave. I finally quit everything except watching my son sing.

The rls during the day is accompanied by pain. I am seeing a new doctor Jan. 15, I hope I survive until then, and I am taking my oldest daughter and my husband as support so I can be assertive. I am also taking a lot of information I have found on this site as well as the guide sent to me for health care providers and the Mayo Algorithm. I have really been educating myself and am getting ready to educate doctors if need be. I am using a doctor from this site. I hope that means he knows what he is doing.

By chance, at Thanksgiving, I broke a rib and had to take 7.5 Loratab. Guess what? My daytime problems disappeared as long as I took the meds. The pain does not even allow me to do the chores that used to help relieve the rls. Hot baths no longer work, stretching no longer works. Nothing that used to work works anymore. I have had all the blood tests. Sorry, I get long winded, but I am so excited to be able to talk to those that understand. Even though family and friends see me suffer and sympathize, they do not understand.

Wish me luck on the 15th.

[ctravel12]

Hi frustratedinga and welcome. I am so sorry that you are having such a rough time with your rls. Are you still on requip?

I used to take requip and I did good in the beginning and then all of a sudden I had rls 24/7 with alot of pain. I can certainly relate going to movies and dinner and not being able to stay. I no longer take requip. I am also on clonazapem and it does seem to work for me.

Please never apologize for doing a long post. We learn from everyone on this board. I am glad that you are reading alot of posts and taking articles to the dr including the Algorithm.

Please keep us posted on your dr appt. goes on ther 15th of Jan.

Anytime you feel like talking, venting, screaming, or whatever, we are here for you. You have definitely found a caring and supportive group.

[ViewsAskew]

Woo-hoo! Congrats to you on taking your own health into your own hands - no better place for it.

I wish I could say that your doc will be great. . .hopefully he or she will. A few of us, however, have not had the best experiences. I will keep my fingers crossed for you. Most of them really are good. I just want you to keep a little room in your heart for the possibility that this will not be perfect and you may have to do more work and keep trying.

[mctoo25]

HI all, I've been a sporadic lurker for years and finally decided to register and make a comment.

Back in 2002 my sporadic rls went from couple times a year to monthly, then in late June suddenly became a 24-hour a day problem. The bouts lasted 2-3 hours and there'd be about 45 min of calm when I could sleep, then the rls would wake me up again. Before this, I'd never even thought about meds, and what little I'd read about rls made it sound like an embarassing, psychosomatic complaint. I am so glad I was able to just Google rls and find such a wealth of up-to-date treatment info!

My PCP offered benzoes, but knowing how addictive they can be I asked for something else and he put me on Ambien. While I couldn't take it during the day, my job allows for some walkng around, so the day time rls was tolerable. Overall, it worked great, but gradually I got some tolerance to it. Thanks to this site and a few otehrs I learned about Mirapex and--after going thru a pricey sleep study during which I couldn't sleep 'cuz no meds--got on it.

Mirapex has worked well for me and I find no side effects, except a very slight sedation at first. Because I have rls 24/7, I take it twice a day (more on days off if I want to nap), a .25mg at bedtime and a half tab about halfway into my work shift. Generally I'm free of sx unless I forget to take a dose on time.

So, what has moved me to post:

Reading people's posts above about worsening rls while on meds leaves me wondering if it's really augmentation from the meds or if it's "just" the normal progression of rls with breakthru sx needing a dose increase? If I'd had a more gradual onset, got on medication, and THEN had the drastic, sudden deterioration, it would probably have gotten diagnosed as augmentation and I'd ahve been switched to an old-style DA. And since the level of rls sx would've stayed that bad, I'd be blaming Mirapex for "permanent augmentation."

Any thoughts on this? Anyone had augmentation-like worsening that responded well to a med increase alone, and didn't keep getting worse? I wonder how often immediate augmentaion, within a week or two, is because the rls was progressively worsening--that's why someone goes to the doctor for meds the first time--and that process is just continuing? Meds don't heal the rls, just stop the sx, whatever's going on in the brain is still going on, so if someone's in a deteriorating phase starting meds won't stop the deterioration, will it? There'd be some improvement for a few days on the med trial, but then breakthru sx would hit and it would look like it's caused by the meds.

My specialist gets kind of vague every time I ask about the sudden, drastic change in my Sx, saying "it's that kind of illness, gets worse and gets better..." Then I ask if that means if I can expect to go into remission at some point, and he shakes his head and says that's not something I should expect. Overall, my impression is that my particular pattern isn't something he's seen before, and he might be skeptical that it was as quick and severe as I report. So from my talks with him, I can't really say if the above idea is likely or not.

I work in an "allied (medical) profession" so have a good background in meds and how they work. I know that keeping a fairly steady blood level of mirapex is important to keep sx down or gone. Most of us would like a a fast-acting pill to take when a problem hits and that's generally what MDs seem to start people with rls on at first. Since mirapex usually takes a couple hours to really "hit" for me (but see below for a tip), once the rls starts up I know I'll be up for a while. Keeping the blood level up with the b.i.d. dosing keeps this from happening.

An MD I work with (a co-worker, not my practitioner) has very bad rls and "I turned him on to" mirapex, he'd been taking huge doses of Ultram at night before that. He's been very pleased with it, although he still needs high doses for his sx (which he says knocks him out pretty good each night, too; wich I got that). Kind of odd-he only gets the rls at night but needs huge med doses to control it; I respond well to a low dose but have sx all the time (without the meds).

We were talking about all this and my co-worker asked how long mirapex usually takes to stop sx and I told him a couple hours, especially if I have food in my stomach (a pretty contant state, sadly). Here's the tip my co-worker gave me: take mirapex sublingually--let it disolve under your tongue. I find it doesn't always work as well for me as it does for him, but this is probably dose-related.

I noticed when I do this laying down (reading) it worked but not when I'm sitting up. I figured that was defintiely psychosomatic, but finally realized that when I'm laying back, the pill was dissolving and spreading back under my tongue--over a lot more mucous membrane for better absorbtion, but when I sit up it just stays right there in one little area. I find now that putting it back under the tongue on one side or the other works pretty well.

Our MDs gave us both samples of ReQuip to try and we both had serious bouts of rls following our first doses so neither have tried more (my rls specialist said I shoud have just taken more, but I used to self-treat with benadryl and learned the hard way not to take more of something that triggers rls!). I'm pleased to see that mirapex got the FDA green light and is now officially approved. Doesn't seem to be getting the foofaraw that ReQuip did, though.

Well, I meandered a bit so I'll stop here.

Thanks for the site and keep up the great work!

[becat]

Hi and Welcome Mctoo,
Glad to have you on the board, only sorry you had the need.
Really glad you stopped lurking and posted, we learn best from each other, so everyone's experience counts around here.
I took Miarpex for almost 3 years. Yes, it worked in the beginning and for about 3-4 months until I saw breakthrough. I do believe that I could have stayed on it longer if we (the doc and I ) had addressed both pain and sleep issues along with the smaller dose of Mirpaex. I was 24/7 by the time I found my expert and have always had pain as one of my symptoms. I honestly think that upping the dose is not the best idea judging from the Lent of time most of us will need for it to work well.
I have to say that yes I agree with those days that are just rough and timing is off (a constant issue for me) and letting a med dissolve on the tongue is a helpful thing.
As per remission, I've heard of it and have even talked to a few who have gotten lucky. Most recently our Neph has seen a great deal of remission. Yeah! I doubt that for me, but keep a pray on the moon and fingers crossed. I think that it depends on how fast you catch the DX and how well you use the meds available, not to mention my genetics hasn't proven out to well. Mainly my mom side of the family has the mean RLS version, dad's is mild, Only my mother is our family has seen remission, but hers is seemingly timed throughout her life, due to stress or other illnesses, body issues (like menopause and pregnancies).
Welcome again and so happy to have you.
Lynne

[jlb]

I'm confused about augmenttion only being associated with DA's...Is oxycodone a DA or Opiate?

I might be augmenting on Oxycodone, but from what I am reading, thats not possible??

Another question is whether augmentation is permenant for that particuliar drug. Can you stop the drug for a while and then go back to it?

I had terrible reactions to requip and mirapex. The Oxy is the only thing to work so far. However, if I am Augmenting and the DA's aren't an option, what next? Can you switch from Oxy to Hydro? Can you Augment from the Benzoes?

[Neco]

Oxycodone is an opiate. I've never heard of augmentation FROM opiates, but if you stop taking them you may notice a spike in your symptoms as your body goes through withdrawl.

It's certainly possible to step down to hydrocodone from oxycodone. I've gone back and forth between the two a couple times.

[ViewsAskew]

So, what has moved me to post:

Reading people's posts above about worsening rls while on meds leaves me wondering if it's really augmentation from the meds or if it's "just" the normal progression of rls with breakthru sx needing a dose increase? If I'd had a more gradual onset, got on medication, and THEN had the drastic, sudden deterioration, it would probably have gotten diagnosed as augmentation and I'd ahve been switched to an old-style DA. And since the level of rls sx would've stayed that bad, I'd be blaming Mirapex for "permanent augmentation."

Any thoughts on this?

The specialists split up progession from augmentation in this way - if it happens in less than a year or two year period, AND you are taking a DA, it's augmentation. Generally speaking, RLS does not worsen dramatically in short periods of time.

Augmentation is defined as symtoms more severe or more frequently. Augmentation is relatively easy to spot at it frequently just starts earlier. They can also be noticably worse when you do feel them.

If the augmentation is minor, some docs have you just increase your dose. This is where it gets sticky. You have to define minor in the first place. So, if you always had daily RLS that started at 8 PM and now it starts at 7 PM, but isn't really worse, most docs would have you just take the dose earlier. But, if you had daily RLS that started at 10 PM and now starts at 2 PM - that would be different. It's subtle. Also, if you had augmenation already - even mildly - when it happens again in 3 months, what do you do? Many docs increase to dose. But, after awhile you have a vicious cycle. So, some docs now stop adding more even to mild augmenation and just have the person stop.

Trouble is, many of us patients are helping them define what this is and how to treat it - there are NO research studies on it. It's all trial and error at this time.

We were talking about all this and my co-worker asked how long mirapex usually takes to stop sx and I told him a couple hours, especially if I have food in my stomach (a pretty contant state, sadly). Here's the tip my co-worker gave me: take mirapex sublingually--let it disolve under your tongue. /]

It takes a long time to cross the blood-brain barrier. To add to this, remember to always take it before symptoms start!~

Our MDs gave us both samples of ReQuip to try and we both had serious bouts of rls following our first doses so neither have tried more (my rls specialist said I shoud have just taken more, but I used to self-treat with benadryl and learned the hard way not to take more of something that triggers rls!). I'm pleased to see that mirapex got the FDA green light and is now officially approved. Doesn't seem to be getting the foofaraw that ReQuip did, though.

It takes about three times the dose of Requip as Mirapex. However, I also found - even at three times the amount, I couldn't switch from one to the other. But, I was also having severe augmentation at the time, which easily could have accounted for that. Some people, though, actually switch off between them every few months. They do this to prevent any tolerance, though not sure too much has been noted.

Glad you broke silence! It's always nice to hear new voices. We see how many people lurk - glad to have someone stop in for awhile. It's like being a a huge cafe with big windows - we can see hundreds of people outside, peering through their cupped hands - we wave, but they walk away. Every once in a while, someone opens the door and comes in.

[Anonymous]

--