Need advice

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.
James7
Posts: 29
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

badnights, That's a wealth of information. Augmentation confuses me. I get that RLS worsens with time/age, but augmentation is specific worsening due to medicine (Mirapex); but, it will get better once you're off the med? Whereas breakthrough RLS due to the meds not working will not get better unless you take different meds or a higher dose, correct? Thank you!

ViewsAskew
Moderator
Posts: 16176
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need advice

Post by ViewsAskew »

Augmentation is indeed caused by dopaminergic substances - pramipexole, ropinerole, etc. It almost always goes away once you stop the meds. BUT, if you've been augmented a long time (some of us had doctors who didn't understand it and we kept increasing doses for years), you can have progression at the same time. SO, when you stop the DA, the symptoms are worse. Sometimes people's symptoms are worse for awhile before they get better - like several weeks to a few months. A teeny tiny minority or people seem to get worse when augmented and either do not improve or it takes a very long time to improve. Docs do not recognize this, saying it is progression.*

Breakthrough is when the medication or whatever you are using is not strong enough to cover ALL symptoms, so you get some mild symptoms here and there. You either need to take the medication at a different time, in a different way, or with something else, or increase something.

*A few of us here had a tremendous increase in symptoms due to dopaminergics. I had PLMS primarily - never got deep sleep or at least not much. I had very mild RLS/WED - maybe twice a month for 15-20 minutes. The doc told me to take pramipexole. I did. Within a week, I had RLS/WED every day. He had me take a higher dose, and it started earlier. So he split the dose do I took some earlier. And so on until I had symptoms 24/7 and didn't sleep more than 20 minutes a day, couldn't work, and my life was upended. When I stopped the DA, after about 18 months of this, I still had 24/7 RLS/WED. It took years before it became 18/7, then maybe 14/7. I take medication about 6 hours after I awaken each day and the early morning I am symptom free, so I'd guess that I have symptoms about 12-14 hours a day. It is now 15 years after I augmented.
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.

James7
Posts: 29
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

ViewsAskew wrote:
Thu Aug 27, 2020 7:49 am
Augmentation is indeed caused by dopaminergic substances - pramipexole, ropinerole, etc. It almost always goes away once you stop the meds. BUT, if you've been augmented a long time (some of us had doctors who didn't understand it and we kept increasing doses for years), you can have progression at the same time. SO, when you stop the DA, the symptoms are worse. Sometimes people's symptoms are worse for awhile before they get better - like several weeks to a few months. A teeny tiny minority or people seem to get worse when augmented and either do not improve or it takes a very long time to improve. Docs do not recognize this, saying it is progression.*

Breakthrough is when the medication or whatever you are using is not strong enough to cover ALL symptoms, so you get some mild symptoms here and there. You either need to take the medication at a different time, in a different way, or with something else, or increase something.

*A few of us here had a tremendous increase in symptoms due to dopaminergics. I had PLMS primarily - never got deep sleep or at least not much. I had very mild RLS/WED - maybe twice a month for 15-20 minutes. The doc told me to take pramipexole. I did. Within a week, I had RLS/WED every day. He had me take a higher dose, and it started earlier. So he split the dose do I took some earlier. And so on until I had symptoms 24/7 and didn't sleep more than 20 minutes a day, couldn't work, and my life was upended. When I stopped the DA, after about 18 months of this, I still had 24/7 RLS/WED. It took years before it became 18/7, then maybe 14/7. I take medication about 6 hours after I awaken each day and the early morning I am symptom free, so I'd guess that I have symptoms about 12-14 hours a day. It is now 15 years after I augmented.
Oh my goodness, ViewsAskew, my heart breaks for you. I have mild symptoms during the day (I need to move or go walking or bounce my legs) and sometimes movements are involuntary...and anytime of day I am relaxing, I have symptoms, but it isn't at the level where I feel I need meds for it. I have always been 'active' and just contributed it to that. I hate this disease for all of us. I wish we could all be free of it. Your post really helped me to understand augmentation better. Thank you for responding and being so thoughtful to pour into others' lives on this site. Blessings!

Polar Bear
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Posts: 7914
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need advice

Post by Polar Bear »

This is an excellent book that you may find very informative, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

My copy is covered in Post-Its and pencil comments and I wouldn't be without it.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

James7
Posts: 29
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

Polar Bear wrote:
Fri Aug 28, 2020 12:00 am
This is an excellent book that you may find very informative, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

My copy is covered in Post-Its and pencil comments and I wouldn't be without it.
Thank you. I will look for it!

legsbestill
Posts: 547
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Need advice

Post by legsbestill »

I note that you say you halved your dose of pramipexole (having increased doubled it a few months ago) in the last few weeks. Did you notice your symptoms getting worse after you reduced the pramipexole? Even if you are not augmented, reducing that drug is likely to cause problems. It seems to me, reading your posts, that there is a reasonable possibility that you have augmented on pramipexole. Also, there is a possibility of augmenting on tramadol and I notice that tramadol is part of your regime also.
It is possible that the hot flushes you are experiencing are caused by lyrica. When I was taking lyrica, I experienced burning patches on my skin - they just appeared spontaneously. They stopped when I discontinued the drug.
It is worth being aware that, in a cruel irony, one of the sure fire ways of exacerbating rls is to get too little sleep. This can result in a vicious cycle developing. It is possible this is happening to you at the moment, triggered by worsened symptoms as a result of reducing your pramipexole dose.
Finding a solution may be tricky given that you are already on a fairly extensive drug regime. You may need a stronger opioid to help you get some good sleep and cope with the reduced pramipexole.
I agree with everyone who has said that your ferritin does not seem particularly high.

James7
Posts: 29
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

stjohnh wrote:
Tue Aug 25, 2020 1:26 pm
Your ferritin indicates your BLOOD iron is fine, however that is not the same as BRAIN iron. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Holland, I wanted to say I read your post/thread about the injectafer infusions and am encouraged. Are you still being helped after the third round?

My dr has ordered me to to have two infusions of injectafer and I am hopeful I am inside the statistics of those helped. I will hopefully get my first infusion within the next 2 weeks. My dr has asked me to have blood work done at the four week post-infusion time-frame. What would be the difference at that point vs the 6 week point mentioned in the IRLSSG paper? I am wondering if I should question him on that.

Also, according to your post/thread, you started seeing results immediately, correct? I am hopeful that will be the case with me as well.

Thanks,
James

stjohnh
Posts: 1111
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Need advice

Post by stjohnh »

James7 wrote:
Wed Sep 16, 2020 7:21 pm

My dr has ordered me to to have two infusions of injectafer and I am hopeful I am inside the statistics of those helped. I will hopefully get my first infusion within the next 2 weeks. My dr has asked me to have blood work done at the four week post-infusion time-frame. What would be the difference at that point vs the 6 week point mentioned in the IRLSSG paper? I am wondering if I should question him on that.

Also, according to your post/thread, you started seeing results immediately, correct? I am hopeful that will be the case with me as well.

Thanks,
James
James, IV iron usually takes 2-6 weeks to have an effect. Definitely not immediate. If possible I would get the repeat ferritin at the time recommended by the guidelines. Ferritins done sooner will be higher, perhaps much higher, and that will scare the doctor.
Blessings,
Holland

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