Venting

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
maxietobias
Posts: 22
Joined: Sat Feb 23, 2008 11:46 pm
Location: Washington State

Post by maxietobias »

Cyndi---Yes, the Mirapex is working. I am at the 3 mg dose. I take 1mg at 8AM, 1mg at around 3PM, and 1mg around 9PM. Prevention is the key for me. Once the symptoms start it is very difficult to stop them. Yes, I will get in to see my neuorologist---he is very knowledgable about RLS and sponsers a support group. The group only meets twice a year. I guess I need to learn more about augmenting.

Ruth---from Washington State :)

cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Post by cmoore1958 »

Ruth,
I'm glad it's working for you. Your doctor sounds great! A good doctor who knows a lot about RLS is hard to find, you are very lucky. And, I agree that staying ahead of the rls is optimum. I look forward to doing that again soon. :)
Take care and let us know how you're doing.
Try and meet us in the chat room tomorrow night at 6 pm or so your time, 8 pm central.
Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

ctravel12
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Location: Lake Havasu City, Arizona
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Post by ctravel12 »

Ruth I am so glad that the mirapex is working. The one thing to remember is to take it ahead of time to stop the onset of rls. That is what I do and does help tremedously.

I too am glad that you have a neurologist that is willing to work with you and above all listen to you.

Please keep us posted as we really do care as you are part of the family.

If you remember we do chat tomorrow night at 7pm az. time. Hope to see you there.
Charlene
Taking one day at a time

ctravel12
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Post by ctravel12 »

Happy feet I am glad that you will be reading on the discussion board and by all means do join in the chat room tomorrow night. It is a wonderful group and we have a great time. Ask any questions you want and we will try to answer to the best of our ability. At least we can give you all the support that you need. It is a great group.
Charlene
Taking one day at a time

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

maxietobias wrote:Cyndi---Yes, the Mirapex is working. I am at the 3 mg dose. I take 1mg at 8AM, 1mg at around 3PM, and 1mg around 9PM. Prevention is the key for me. Once the symptoms start it is very difficult to stop them. Yes, I will get in to see my neuorologist---he is very knowledgable about RLS and sponsers a support group. The group only meets twice a year. I guess I need to learn more about augmenting.

Ruth---from Washington State :)


Hi Ruth,

Glad you have a knowledgeable doc - that's more than 1/2 the battle from my perspective.

Just wanted to clarify...Mirapex can still work at the same time you can have augmented. I am in no way saying you have augmented, however....

Mirapex is not a good drug for symptom control AFTER symptoms start, as you have noticed. It takes 60-90 minutes to work in you system according to the experts.

Really, all augmentation means is that symptoms either have increased in duration or intensity within a certain time period after starting the medication. Maybe it moved to new body parts (mine moved to my arms), or it started earlier or lasts longer. Or it's just stronger. All of the above happened to me.

So, if you started out at 3 mg of Mirapex and are still taking the same dose - definitely not augmentation. If, however, you've had to increase the Mirapex a bit here and a bit there along the way, it's very likely augmentation.

Does that make sense?
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.

maxietobias
Posts: 22
Joined: Sat Feb 23, 2008 11:46 pm
Location: Washington State

Post by maxietobias »

Ann--I started out with just 1 tablet .of .5mg. Then that didn't hold and I increased it to 2 a day, etc. and now I have to take 2 pills 3 times a day and the RLS is stronger, more often and now in my arms as well as legs!! Tonight I didn't take my last dose until 9:30PM (usually it's taken a little earlier ). So---now I have all the symptoms. I could take Vicodin but it keeps me awake. If the RLS gets any worse, I'll take it! I have Polymyalgia Rheumatica so I'm in pain anyway and I'm being weaned off
Prediod
So---it sounds like augmentation to me, right?
Thanks for listening,
Ruth

maxietobias
Posts: 22
Joined: Sat Feb 23, 2008 11:46 pm
Location: Washington State

Post by maxietobias »

Oops! Typo. I'm being weaned off Prednisone because I am super sensitive to its side effects.

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Hi Ruth,

Welcome to the board and to the best group you'll find anywhere on the internet.

You know that I have a couple of nonRLS friends, LOL, and they have conditions that require steroids from time to time. It's hard enough to wean off of those, and to have a painful condition on top of that is bound to raise the pain levels alone.

I left Mirapex at 3 mg., it had gotten to the point I just could not take it anymore. I have since learned that I can but only for bad cycles and only for a week at a time. Otherwise, I augment very fast and like you get it in my arms and shoulders. Yes, it could be the Mirapex, but I'm no doc.

You mentioned pain, is your PR pain different than your RLS pain? Do you have pain with your RLS or have you had pain with your RLS?
Your not tied to the pain med your on. First rule is to go slow with pain meds, but it is not uncommon to have to find the right one for you. If Vicodin keeps you awake, ask to try something different.

And just for myself, with chronic pain from any condition, you have to stay ahead with that as well. You probably already know that, in fact I'm sure you do. You know if I just get startedd on something and forget, the pain hits me harder and I can't seem to get it to manageable at all for the day. Although I have all the normal RLS symptoms, I'm a morphed RLSer now. My pain button got turned on and I dount that it will get turned down by much or ever turn off. Come on researchers, hurrry up on the pain thing. LOL

The reason I ask is that if you have had pain meds, are on 3 mgs. of Mirapex, and being ahead of the symptoms, but still feel like it is getting worse, you may honestly need to have a serious conversation with your doc about coming off the Mirapex and trying something else. Do not stop cold turkey if you can help it.

Although many have, like me, it will produce a horrible week or so. Even stepping down can make RLS worse, but I believe your safer stepping down.

Gosh I sure hope your doc will help you quickly. Sorry for your need to find us, but so glad to have you here.
Post as you like, we all learn best from one another.

Lynne

ViewsAskew
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Post by ViewsAskew »

Lynne had some great advice.

Many doctors don't understand augmentation...heck, many of us don't! At least, until we're there. Then we have to find a way out from it.

There is a thread on augmentation in the Pharmacueticla section's "sticky". It might help to read that and see if you think it applies. While Lynne's right that she's not a doc, and neither am I or you, or most of us here, you know your body...if you read about this and it makes sense with what is happening, listen to yourself and your body.
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.

SquirmingSusan
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Post by SquirmingSusan »

Hi Ruth. Sorry that you're having troubles with this all. It's common for Vicodin to keep people awake, at least it did for me and I've heard that from others around here. But there are other pain meds and you can probably find one that works for you, if your doctor is good and wants to help. Also, you could ask about sleeping meds like Ambien or Lunesta. Many of us need a "cocktail" to keep our symptoms under control, and help us sleep.
Susan

ctravel12
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Post by ctravel12 »

Hi Ruth I am so sorry for what you are going through. I know like Susan said sometimes we have to go through a cocktail of meds to see what works for you.

I do take mirapex and take the lowest dose which is .125mg. Do not know if I told you this (if so sorry for repeating) but I take half of the .125mg about 4 pm to stop the onset of rls and then take the whole .125mg and 1mg of clonazapem about 1 hr before reitiring and so far it is working for me.

What Lynne said about not stopping your meds "cold turkey" is so true as I did that and believe me I paid for it dearly. Be sure to have your dr wean you off the mirapex and see what does work for you.

Please keep us posted as I hope that you find the right med(s) that will work for you.
Charlene
Taking one day at a time

maxietobias
Posts: 22
Joined: Sat Feb 23, 2008 11:46 pm
Location: Washington State

Post by maxietobias »

Cyndi, Ann, Lynn, Charlene, and Susan--Thanks for your kindness and for all the info. I'm so glad I found you! My RLS has increased in strength and has grown to include arms and shoulders. This has been over a 3 year period. I am now to the maximum dose of Mirapex and it is still working most of the time--not all the time. My RLS does not cause pain but my PMR does. I'm almost done with the Prednisone withdrawal---thank goodness--never again!! So if the PMR pain comes back I'll just live with it or take pain meds. I was on Restoril for sleep until diagnosed with sleep apnea. The sleep doc says no sleeping pills--makes the apnea worse. I'm on a c-pap machine--fun-fun-fun-.. I haven't slept well since going off the Restoril in Jan. I get about 3 to 4 hours sleep a night. Needless to say I am very fatigued.
Today I was informed that since I haven't seen my neurologist since 2004 I will need a referral from my family doctor. Then I will probably see the nurse practitioner in about a month! My neurologist is about 3 months out! So---I hope the Mirapex keeps working for a while longer. Thanks for listening to my story. Do any of you on c-pap take a sleeping pill?
Hope you have pain free night.-----Ruth

ctravel12
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Post by ctravel12 »

Oh Ruth I am so glad that we have been there for you. That is what is so great about this group.

I do not use a c-pap for sleeping so cannot give you any input but know that other members will give you advise.

Please keep us posted on how you are doing. We really do care.
Charlene
Taking one day at a time

lorabell
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Post by lorabell »

Hi Ruth,
Nice to meet you.
I rotate my meds, and it helps. I rotate Mirapex, klonopin , Requip and Neurontin. The first 3 , I take 2 mgs, 4 times a day and Neurontin is 300 mgs, 10 a day.
I try to not take them as perscribed. My Dr. knows if I am up and busy, I don't need them like that, but in case I do, I have them.
I said that , because you said you are on the maximum dose, and I am wondering what your Dr. considers max. Also, as we all say, what works for one won't work for another, which for me is the most maddening thing about rls and plmd. We all HAVE it, but it is so INDIVIDUAL ! They are not like other syndromes which Dr's know what stages will come next. Some of us can actually have rls go into remission, but it ALWAYS comes back. I have yet to hear of anyone not getting it back. RLS /PLMD are pretty friendly syndromes. Once they move in, they are like bad house guests. They just won't go away. LOL
Again, welcome to the board, and we chat just about every night , around 8 PM central time. Love to have you drop in.
Hugs,
Lorabell
aka

wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

ViewsAskew
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Post by ViewsAskew »

maxietobias wrote:My RLS has increased in strength and has grown to include arms and shoulders. This has been over a 3 year period. I am now to the maximum dose of Mirapex and it is still working most of the time--not all the time.

Ruth


I wish I weren't typing this...but what you are describing really sounds like classic augmentation to me. Sure, RLS can increase over a 3 year period, but if I understand this correctly, the natural progression might be .5 mg to .75 mg or even 1.0 mg over 3 years...not .5 to 3 mg.

The RLS increasing in strength and moving to arms can also happen on its own....but so many of us have had this exact experience with augmentation. I still remember that moment when I first felt it in my arms. I knew I had augmented, but couldn't find a doctor to help. I was just hoping to keep it where it was without getting worse before I found a doctor to help. So, here I am in bed, trying to sleep, and the RLS starts in my right arm. I shook it in disbelief, said something like, "This isn't fair!" and then started sobbing.
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.

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