Am I crazy? Requip making me feel worse....

Cinnamon193 · Post by **Cinnamon193** » Wed Jun 17, 2009 8:06 am

Hi, just a quick question:
I've only been on requip for a few nights now, but I swear, as I'm titrating up the dose (I'm at 1mg now), my legs are getting worse. Is this possible?
Thanks.

Neco · Post by **Neco** » Wed Jun 17, 2009 2:48 pm

Yes, this is called augmentation..

The most distinct signs of augmentation are a worsening of symptoms, and also that your symptoms appear earlier and earlier.

You need to let your doctor know you think you are experiencing augmentation, so you can try another medication.

Its poorly understood unfortunately, and some doctors don't even know what augmentation is. Also those of us who augment so soon seem to be a rarity as well, as it usually takes longer for augmentation to set in.

Cinnamon193 · Post by **Cinnamon193** » Wed Jun 17, 2009 5:09 pm

Thanks Zach,
I really appreciate the reply.

I'm going to look like such an idiot saying this - but I thought augmentation could occur after taking the medication for, say, years? Not just a few nights? I sure wasn't expecting this. Feels like I'm losing my mind, and considering my gp has little experience with RLS (I'm his first patient on requip), he'll probably really start thinking I'm out of my tree if I tell him I'm getting WORSE on treatment. It's weird - even my feet are worse.

Thanks so much for letting me know I'm not headed for the loonie bin.... yet. lol

Neco · Post by **Neco** » Wed Jun 17, 2009 6:20 pm

Please click the link in my signature for the Mayo Algorithm. The Mayo Clinic is one of the most recognized and trusted institutions in the country when it comes to research and treatment on difficult medical conditions, and most doctors are usually receptive to information from that kind of source; but if a doctor ever blows off anything from the Mayo Clinic when they clearly can't do better, its time to find a new one.

Print it out and read it thuroughly, you will get a much better understanding, and also take a copy in to your next doctors appointment, or drop it off for him to read.

Augmentation can take months or up to a year or so in most people, but some of us augment very quickly for some reason. I have tried Requip in the past and while I didn't augment from it, it worked 50/50 and also I got bad headaches once in a while as well as nausea.

When I tried Mirapex I augmented on the first dose in the starter pack too, so it's not unheard of, just uncommon I think.

The Algorithm discusses Augmentation and what to do, in this case you can try Mirapex, and if that doesn't work the Algorithm recommends switching to opiates. Controlled release opiates are one of the best treatments for daily RLS, but many doctors are unfortunately too ignorant, or too scared of the authorities to go down that route.

Although I'm not saying it will happen, always keep in mind the fact you may have to find another doctor.. Many of the folks here have been through up to a dozen or more on average.. I got lucky, and was treated with opiates from the start, although I made several attempts to try other medications over the years, because they were becoming a problem for me personally. But now at least I have validation on record that my RLS is severe and other medications do not work, despite several trials and repeat trials on some.

Cinnamon193 · Post by **Cinnamon193** » Wed Jun 17, 2009 7:14 pm

Thanks Zack. One of the first things I did was run off a copy of the Mayo algorithm, even before I found the forum here.

Unfortunately, Mirapex did nothing for me, and I was on morphine (on and off) already when it started - it was for another condition. Am I fun, or what? I think I've already burned through most of the common options already. Morphine and neurontin take the edge off, but I still need something more. I'll have to see what my gp prescribes next, but it's tough for me to take him seriously when he says he rarely ever sees anyone with rls. Getting desperate....

Thanks for your help though!

SquirmingSusan · Post by **SquirmingSusan** » Wed Jun 17, 2009 8:32 pm

I had a few blissful nights of relief from RLS when I started taking Requip. But after a couple weeks I started getting horrible, burning pain in my legs about 90 minutes after taking it. And my RLS got about 500 times worse. So yes, augmentation can happen very quickly! Those drugs can also cause leg pain; it's even listed in the side effects. Sadly my leg pain and augmented RLS has never completely gone away, and that all was about 2-1/2 years ago.

It's best to get off those meds right away when they start giving you trouble, imo!

BTW, your doctor sees people with RLS all the time, being that about 8 percent of the population has it.

Cinnamon193 · Post by **Cinnamon193** » Thu Jun 18, 2009 2:11 am

SquirmingSusan wrote: BTW, your doctor sees people with RLS all the time, being that about 8 percent of the population has it.

lol True enough.

Regarding the Requip - the doctor said to give it at least a couple of weeks yet. :shock:

omg I sure hope I don't get permanent augmented rls like you decscribe. It sounds horrible.
I just don't know if I completely trust my GP's judgement in all of this rls stuff.... just a gut feeling, ya know? And I can't just get a new doctor. I really wish he'd refer me to a neurologist....

woodsie357 · Post by **woodsie357** » Thu Jun 18, 2009 4:09 am

My personal exp with Requip was that it made my RLS worse from day one. I think it's unusual that it happened, and my Dr thought I was nuts. But my RLS was awful while on it. Once I quit a few weeks later it was back to its regular awful.

I hope you get some relief soon!

Post by **ViewsAskew** » Thu Jun 18, 2009 4:12 am

Cinnamon, here's my tale of woe, lol:

I had mild RLS - happened once or twice a month most times, though at times worse and at times better. It started when I was in high school. But, I managed it with exercise, clothing (nothing tight on my skin), lotion (always itching, itching set off the RLS), and getting to sleep on time.

In my early thirties, my partner complained of me kicking at night. Fast forward 1o years later. I now am sleeping 14 hours a day and am exhausted. I am awakening up to 30 times a night (I kept a tally sheet by the bed). After determining my bladder was fine, we did a sleep study. That kicking? Yup. It was the problem.

It's treated the same way RLS is, with a dopaminergic. I take it. I have RLS a night or two, but think, gee, it's what happens every month. Within a week, though, I realize I'm having RLS EVERY DAY. Indeed, every day. Starting at about 10 PM. See the doc, he says take more Mirapex. I do. Soon it starts at 8 PM. More Mirapex. Now it's at 4 PM. You get the picture. Eventually it was 24/7.

So, anyone who says it takes years or months to augment? They're crazy. Now, I'm sure that Susan and I are not the middle of the bell curve, but we're on it! So, it can happen.

Per giving it a couple weeks, hmmmm. Here's what I'd do. I'd stop it and see what happened. It might be coindicence and that the medicine isn't making it worse, it just is worse and you're not taking enough med to make it better. But, if it immediately gets better? Hmmmm.

You know, I still come back to that this may not be only RLS. Morphine should knock it out completely. How much were you taking? The RLS dose is 5-10 mg every 6 hours or 15-30 every 12 hours if controlled release. I may have misunderstood what was said, so ignore if the morphine did control it.

Cinnamon193 · Post by **Cinnamon193** » Thu Jun 18, 2009 5:52 am

Oh Ann.... that's terrible. Hearing stories like yours really makes me feel sheepish for complaining about my issues. I can't believe you wake up that many times during the night. I feel so badly for you. (And your partner too!)

I'm going to take your advice and stop the requip now. That just makes sense. I can always restart it, if I don't see a change, like you said.

My boyfriend (so supportive I might add) says I don't have any sort of kicking or twitching going on at night, and he's a light sleeper so he'd know by now.

It's ironic that you mention it, but today, for the first time, I had itching in my lower legs that was driving me crazy.

I am taking morphine (just the ordinary kind), but it just makes me so sick and stoned. I've been on and off it for years due to ankylosing spondylitis and undiagnosed feet pain, but I've never been able to take more than 5mg of morphine every 6 hours. Morphine alone at that dose just isn't enough. So I need neurontin too - at 3000mg a day. This combo is the best I've found so far to handle the rls (I'd guess 80% controlled with those 2 meds), but they keep me SO stoned all the time - there is no way I can drive on these meds, and no way I can write my thesis and finish my degree on this stuff, and I'm kind of a little person for all that medications. Hence, the quest for a DA med that helps. I was just hoping I could ditch one of the stoner meds for a DA, but the search is lookin kinda pitiful right now.

Soo.... ya... I'm not sure if it's rls at this point either. Or, as you said, rls and something else. I'm going to push to find another doctor of some kind - I need a diagnosis from someone who knows more.

I'll let you know how it goes.

Thanks to you and Susan for your replies.

Post by **ViewsAskew** » Thu Jun 18, 2009 6:04 am

The good news is that I don't wake up that often anymore. After a long trial with many drugs, I sleep several hours before waking most night, and some nights sleep through. Yea!!!!

It's soooooo easy to compare yourself, isn't it? (I didn't write the above to compare - my apologies if it came off that way - I was more showing that augmentation is very very real, even at low doses and not taking it long at all.) I tend to do what you've done - say that whatever I have isn't nearly so bad because someone else's is so much worse.

But, that's not fair to ourselves, is it? It isn't how much we have or the type we have....it's that we have it, whatever it is, and that whatever is it is affecting our lives.

Your life is being affected. Extremely. I don't want to make it sound like it's worse that it is....but saying someone else has it worse can lead to minimizing your own issues. You have what you have, I have what I have, Susan has what she has....and we're all here trying to find a way to make it better.

So, no sheepishness. You need answers just like we all do. You need to find a way to live your life and sleep! It's not less important that what anyone else needs.

SquirmingSusan · Post by **SquirmingSusan** » Thu Jun 18, 2009 8:22 am

Can you switch to a different opiate besides morphine? You may be able to better tolerate a different one, say Vicodin or oxycodone. I know that for me, morphine makes me barf and feel miserable, but I tolerate hydrocodone just fine. And after the first few days, the stoned feeling wears off and I just get pain relief. I think it would be worth it to ask if you can try something else. You'd just be switching to a different medication within the same category. Then if it gives you good enough relief, you can try dropping the Neurontin.

It IS possible to get relief without feeling stoned all the time.

Neco · Post by **Neco** » Thu Jun 18, 2009 3:23 pm

Well, if Morphine just takes the edge off, I would be curious to know what dosage you were at, how many times a day.

If the Morphine was working, but not well enough you should have received a dose increase, or he should have at least thought about a controlled release form.

Controlled Release is one of the best options for difficult RLS, especially if its all day every day. I don't remember if Oxycodone trumps Methadone in terms of which is stronger, but sometimes simply switching to a different medicine may give better results.

Usually if Oxycodone and Morphine fail to control it at a reasonable dose, the next option would be something like Methadone, but most doctors freak out if they even hear the word..

If you haven't been on controlled release Medications before, I would go back to your doctor and discuss it with him.. Take the Algorithm with you in any case, and refer to it when you try to explain the situation to him, so he knows what you're going off.

Just approach it with you have tried 2 dopamine agonists and they have not provided satisfactory relief, or worked at all.. And you seemed to get the most help from pain medication, which the algorithm says you should try next anyway, and controlled release might give you better coverage.. Something like that.

Johnny2 · Post by **Johnny2** » Thu Jun 18, 2009 4:18 pm

Though a sleep study is typically not required for a rls diagnosis, it can be a useful tool. You may want to talk about one with your doctor, especially since it sounds like you are sure that you are not on the right track, before you commit to too many meds (extended release opiates and such)
it may be wise to be absolutely sure you are chasing the correct problem.
Once you get to the point of taking these meds, it is a commitment that is not just easily stopped and started. They work for most of us, with relatively few side effects, alot of us are still tired during the day, but we are no longer thinking of removing out limbs with a hacksaw just to be able to sit still. For most of us, it has been a long road to relief and we are still looking for an ideal solution, so learn what you can and let your doctor know how close you two are going to be in you quest for relief, oh, and one more thing, of all the meds i have used over the years, the ones that worked for me, worked almost right away, the ones that did not were not worth the time I put into them (when I say "worked" , they provided several months of relief before a change was needed)

Cinnamon193 · Post by **Cinnamon193** » Sun Jun 21, 2009 7:57 am

ViewsAskew wrote: But, that's not fair to ourselves, is it? It isn't how much we have or the type we have....it's that we have it, whatever it is, and that whatever is it is affecting our lives.

Isn't that the truth! Thanks for your reply. I think comparing is my way of keeping it real and... coping, for lack of a better term.
Here's hoping we all find the right answers!