What To Do?

Use this forum to discuss any issues associated with Augmentation
timphillips
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Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

Its been three years since I posted on this Board. I have good and bad news to report. The good news is I have been able to live a normal life and maintain a 1.0 mg Pramipexole (Mirapex, dopamine agonist, DA) dosage combined with 600 mg of gabapentin. The bad news is I think I am at the end of my rope. Symptoms are intermittently unbearable. Sometimes I fall asleep great but most evenings for 1-3 hours I am a miserable mess. I don't want to increase the dosage knowing that at some point I will need to get off of it. In 2017, I completed a 21 day holiday which resulted in myself back on the DA. I did reduce from 1.5 mg to 0.25 mg so there was a small victory. However, within 6-9 months I was back up to 1.0 mg which I have maintained until now.
I did find a new doc, she is very good. She also has RLS and is very understanding. She and I have discussed a drug holiday. She prefers I wait until I retire. Retirement may be 5 years out so tomorrow I plan to tell her I want to get off Pramipexole, starting immediately.

I going to request to reduce the DA and simultaneously supplement with a low dosage opioid or other drug as she recommends. I also plan to commit to at least 3 months to a year.

I have read through several posts in the "Augmentation" section. Lots of great information. Any specific advice you all can provide is greatly appreciated.

stjohnh
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Re: What To Do?

Post by stjohnh »

timphillips wrote:
Thu Sep 03, 2020 2:06 am
...
I going to request to reduce the DA and simultaneously supplement with a low dosage opioid or other drug as she recommends. I also plan to commit to at least 3 months to a year.

I have read through several posts in the "Augmentation" section. Lots of great information. Any specific advice you all can provide is greatly appreciated.
Sounds reasonable to me. Have you investigated 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
Blessings,
Holland

Rustsmith
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Re: What To Do?

Post by Rustsmith »

If you read through the Augmentation section, you probably realize how difficult it will be to taper down from 1mg of pramipexole without having an opioid to cover it. I was able to drop from 0.75 to 1mg pramipexole to 0.25mg without any issues when combining it with 5mg methadone. My doctor wanted me to go to 10mg methadone, but that turned out to be too much. Any opioid will cover the pramipexole withdrawal, but my recommendation would be to use one of the longer half life opioids so that you don't have to get up every 4 hrs at night to take another dose. That pretty much means either methadone (favored by many of the experts), tramadol ER (tramadol can have some side effect issues and can rarely cause augmentation) or oxycontin (not politically safe these days) or buprenorphine (new kid on the block and probably not something your doctor would want to deal with right now).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

timphillips
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Re: What To Do?

Post by timphillips »

Thanks for the quick response. You all are great!!

Polar Bear
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Re: What To Do?

Post by Polar Bear »

I very successfully weaned off ropinerole, not pramipexole but it is a similar drug. I did it very slowly, over 10 months, and supplemented with Codeine and Pregabalin..
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

timphillips
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Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

The appointment went well. She agreed its time to get off Mirapex. The plan is to be off in 3 weeks with the help of an opioid at bedtime. I will take the opioid for 3 months at which time I will need to get off of it.

Polar Bear
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Re: What To Do?

Post by Polar Bear »

You now have a plan with the support of your doctor. Do you feel the better for having a positive goal.
It is likely to be difficult but just maybe not as difficult as you imagine.
If you do find yourself starting to the waver please do speak further with your doctor. She sounds like she has your back.
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

badnights
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Re: What To Do?

Post by badnights »

Congratulations on coming this far. Even with an opioid to help you, coming off the pramipexole may be difficult. Still, it will be very worth it.

FYI, there are many more posts on augmentation in the Prescription forum (2685 posts mention the word) and in the General forum (almost 1000) than in the Augmentation forum, which is a new forum that conceptually has a lot of cross-over with the Prescription forum. There are some stories in the Prescription forum worth reading.
The plan is to be off in 3 weeks with the help of an opioid at bedtime. I will take the opioid for 3 months at which time I will need to get off of it.
There's something you need to discuss with your doctor - preferably now, not later when you're in dire need. You must discuss what you will use to maintain a reasonable quality of life once the 3 months is up. The choices are limited, being opioids, anti-convulsants, and back to the dopaminergic drugs. If she intends for you to go back on a dopaminergic medication, how does she plan to deal with the augmentation that will result? At what point of suffering will she determine that it is time once again to go through the withdrawal? How much suffering is acceptable - - 1 hour in the evening? 3 hours every evening?

Anti-convulsants like Horizant rarely work on their own in people who have augmented, but are often used in combination with another class of medication - opioid or dopaminergic. Combinations are good, as they keep the dose of each type of medication low.

Please, pay careful attention to Holland's (stjohnh)'s post about brain iron deficiency. The amount of iron in your blood does not reflect the amount of iron in your brain (or even in other organs), but if the concentration of ferritin (an iron-storage protein) is low in your blood, you can be almost certain that the concentration of iron in your brain is low. (If blood ferritin is high, you really don't know anything. ) A low ferritin is anything under 100. Although many labs say anything over 20 is normal, a value of 50 or even 80 is low for a person with WED/RLS, so ask your doctor for the actual number, not a qualitative answer like "It's normal".

Since she has WED/RLS herself, she has - I assume - already checked your iron, including serum iron, transferrin saturation, and TIBC, as well as ferritin. But - you haven't mentioned it. Has she talked to you at all about iron? If not, she needs to bone up on the latest news about this disease (give her the 2018 consensus paper on iron treatment for WED/RLS in my signature link).

There is a lot of evidence that WED/RLS is caused by low brain iron. The simplest treatment for WED/RLS is iron. It does not work for everyone.
But those of us it works for, it works well. There are two ways to get iron - oral and IV. There is a limit to how much iron we can absorb orally, especially if we have high blood iron (many of us have high blood iron even though we - presumably - have low brain iron - presumably, because it can't be measured easily). IV iron works better because it bypasses the digestive system feedback that prevents absorption of iron when blood levels are high. Having lots of iron in the blood, more iron makes it across the brain capillary walls into the brain, and symptoms are relieved.

Some factoids for you (read the links in my signature page for more information):
  • Augmentation is more likely in people whose ferritin is low (under 100).
  • WED/RLS symptoms are more severe in people who have low ferritin.
  • Augmentation is more likely the higher the dose of a dopaminergic medication, and the longer you've been on it.

Simply taking iron can reduce your symptoms. There is usually a lag before effects are noticed: for me it's 2-4 weeks, for other people it's days. You probably won't be able to notice any improvement while you're augmented, but if you're not taking iron you should start now anyway (as long as you're in no danger of iron overload). IV iron can dramatically reduce symptoms; after the initial infusion, you may go a year or so before needing another one.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

timphillips
Posts: 15
Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

Since you all have provided great advice, I thought I should provide an update. Also to let you know your comments have been heard.

I started dropping from 1 mg of pramipexol on Sept 2, 2020. The plan was to take 5-10 mg of Hydrocodone (Norco) at night to put me to sleep. Week 1 I dropped from to 0.5mg, week 2 0.25mg, week 3 0 to 0.125mg and at the end of 3 weeks I was to be completely off.

Weeks 1 and 2 were a breeze. Slept 5-6 hours each night. Week 3 is where the things started getting tough. When I initially started, I found that 5mg Norco did not do much. So, I immediately started taking 10mg at about 9:30 pm with the plan to be in bed at 10 pm.
At week 3 it was clear 10mg needed to be increased to 15mg. Weeks 4 - 6 have been up and down. Typically getting 1-2 hours sleep one night then 5-6 hours the next. It seems Norco is not lasting as long. Also, during the early weeks once I was asleep I did not experience intense symptoms and was able to fall back asleep.

Its now the start of week 7. Here's what I am experiencing:

1. The Norco will put me to sleep but I will be falling asleep with mild symptoms in my legs.
2. The Norco does not keep me asleep as long as it did at the start. At the start I could initially sleep for 3-4 hours, wake up for 30-60 minutes then fall back asleep for a few more hours. Now I wake up after only 2 hours and have difficulty falling back asleep due to mild to moderate symptoms.
3. During the early weeks I immediately noticed I was able to relax 1-2 hours on the couch in the evenings after dinner. I could not do that before Sept 2nd. Unfortunately in Week 6 those same symptoms are back after dinner on the couch.

My plan is to discuss this with my doc. Along with:
1) Is what I am experiencing normal?
2) What the long term plan is
3) Is an IV Iron treatment possible?

Any thoughts are greatly appreciated.

Tim

timphillips
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Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

I forgot to mention, as soon as possible I plan on asking about the IV Iron treatment and what the long range treatment plan is. I tried to schedule an appointment to do so but she is not available until Nov 12th. I am hoping I can simply send an email.

timphillips
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Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

Yesterday and last night I did everything perfect and I got 7 hours (3 hrs then 4 hrs) of sleep. The most I have since I started. So you may ask what is perfect. Here's perfect:
To start 3 weeks ago I went completely off caffeine (although I only drank 1 cup in the morning)
No alcohol - I never drink more than 1 beer
Light exercise, a light dinner and nothing to eat after 6 pm
9 pm: 900mg of Gabapentin, 20mg of melatonin, multi-vitamins, 5000 mcg B12, 45mg slow release Iron
9:30 pm: 15mg hydrocodone

Will be interesting to see if I can duplicate it tonight.

ViewsAskew
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Re: What To Do?

Post by ViewsAskew »

timphillips wrote:
Thu Oct 15, 2020 4:00 am
Yesterday and last night I did everything perfect and I got 7 hours (3 hrs then 4 hrs) of sleep. The most I have since I started. So you may ask what is perfect. Here's perfect:
To start 3 weeks ago I went completely off caffeine (although I only drank 1 cup in the morning)
No alcohol - I never drink more than 1 beer
Light exercise, a light dinner and nothing to eat after 6 pm
9 pm: 900mg of Gabapentin, 20mg of melatonin, multi-vitamins, 5000 mcg B12, 45mg slow release Iron
9:30 pm: 15mg hydrocodone

Will be interesting to see if I can duplicate it tonight.
Fingers crossed!
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.

Polar Bear
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Re: What To Do?

Post by Polar Bear »

Fingers crossed twice l
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

timphillips
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Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

I was not able to follow up with 7 hours of sleep. I've been getting 3-5 even though I have been doing everything the same. Sleep and the symptoms have been inconsistent. I will say that when I do get the symptoms, the intensity is much less.

I did get answers to some of badnights' and other questions from my doc:

(Note: I did not speak directly to the doc.)

Q: Can I take an extended release opioid? A: No, there is not a Norco extended release medication available. (I forgot this medication was only available with Methadone and Oxycodone).

Q: What are the options for treating my RLS after the conclusion of the dopamine withdrawal on December 3rd? A: We will discuss during the next appointment .

Q: Are IV Iron treatments available A: No, your ferratin level is 115. I did mention the study you all have mentioned. I will forward to.

I am a bit disappointed with the answers.

badnights
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Re: What To Do?

Post by badnights »

Hmmm. Norco has acetominophen in it, which is just an extra burden on the body - it's not useful in treating WED/RLS, only the other component of Norco, hydrocodone, is. I suspect her knowledge of RLS/WED is limited, even though she has it. Probably she has a mild version and doesn't take meds. (I'm guessing!) But that's neither here nor there for now... I wouldn't want her to keep you on it long-term, though. Extended-release versions are available for hydromorphone, oxycodone, oxymorphone, morphine, tramadol, and probably others that I don't know about, and methadone is long-acting.

I can see why you're a bit disappointed, but at least you do have a discussion coming up. I think you can still discuss the iron. Print out the paper Holland linked to and highlight the relevant parts for her so she can skim the important parts. If you have iron numbers (iron, TIBC and % saturation) as well as ferritin, you could ask Dr Buchfuhrer whether he would consider you a candidate for iron infusion. Dr B is a wonderful man who answers questions from patients with RLS/WED at somno@verizon.net. I went to see him to get my infusion - made a trip to CA just for that. If Dr B thinks you're a candidate for infusion, you might be able to convince your doctor; I'm sure he would be willing to talk to her. Dr B has also posted hundreds of questions from patients and his answers - not sorted or searchable but pretty incredible just to show what kind of a person he is (www.rlshelp.org).

Don't be reluctant to tell your doctor what your life is like under augmentation. The fact that she gives you Norco and that she wanted you to wait til you retire suggests to me she doesn't know what it's like. But the fact that she then agreed with you that you should stop the DA now tells me maybe she does. So best not to assume she knows anything - tell her. And maybe be mentally prepared to seek help elsewhere, but hopefully you won't have to go down that route at all. I think

I can tell you that your experiences so far are perfectly normal. Horrible but normal.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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