nerve injury

Use this forum to discuss any issues associated with Augmentation
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tagalongbuddy
Posts: 16
Joined: Thu Feb 06, 2020 5:57 am

nerve injury

Post by tagalongbuddy »

I am curious if anyone here has the same serious complication as me. When I went in for a total knee replacement in 2013, I was given a femoral nerve block and then another block in 6 weeks (during a knee manipulation procedure) Long story short, it was a nerve injury and that is when my very severe RSL began. It has been a nightmare ever since. I have a good neurologist who is trying his best to help me but it's not easy.

badnights
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Location: Northwest Territories, Canada

Re: nerve injury

Post by badnights »

Hi tagalong! I remember you posted about this issue. It is an unusual problem, you're the first person I've heard mention it. I am happy you found a good neurologist! What have you tried so far?
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.

tagalongbuddy
Posts: 16
Joined: Thu Feb 06, 2020 5:57 am

Re: nerve injury

Post by tagalongbuddy »

Hello, and Happy 4th of July!
Yes, it is unusual--- Started off with pramipexole then went thru augmentation, then ropinorole and again went thru augmentation. The neurologist started me back on ropinorole again (but not full dose and added gabapentin). This was recent--not sure how I'm going to do with this--sometimes I feel like my head is waving around---loopy. My current neurologist moved so have spoken to a different one (phone so far) Thank you for asking.

Polar Bear
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Re: nerve injury

Post by Polar Bear »

Having augmented twice on a DA I'm surprised that you're back on it again.
Are you on a very low dose of Ropinerole.

Have you used gabapentin before, I'm wondering how recently you started it as often an unwanted side effect will quickly disappear.
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

tagalongbuddy
Posts: 16
Joined: Thu Feb 06, 2020 5:57 am

Re: nerve injury

Post by tagalongbuddy »

I told the neurologist my concern for going into augmentation again with ropinorole. He says it will take some time for that to happen. 2 mg in the morning and 4mg at night. Recently started gabapentin in addition. He thinks it may help the neuropathy in my feet. I have to let him know in a couple of weeks how it is going. Thank you for asking and Happy 4th of July.

Polar Bear
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Re: nerve injury

Post by Polar Bear »

tagalongbuddy -
I told the neurologist my concern for going into augmentation again with ropinorole. He says it will take some time for that to happen. 2 mg in the morning and 4mg at night.
Are you really on a total of 6mg ropinerole daily? If so, this is way too high. The Pharmaceutical provider states that the daily max is 4mg but with experience the opinion of the leading rls experts would indicate that 1mg should be the max daily dose to try and prevent augmentation.

Yes, it is unusual--- Started off with pramipexole then went thru augmentation, then ropinorole and again went thru augmentation. The neurologist started me back on ropinorole again (but not full dose and added gabapentin). This was recent--not sure how I'm going to do with this--sometimes I feel like my head is waving around---loopy.


You have already augmented twice and are on a DA for the third time.
Have I understood correctly and your Neurologist has said that this daily dosage of 6mg is not the full dosage?
Did you titrate up to this 6mg dosage or start right away onto this dosage.
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

tagalongbuddy
Posts: 16
Joined: Thu Feb 06, 2020 5:57 am

Re: nerve injury

Post by tagalongbuddy »

Yes, 2mg three times a day (extended release type) started with one at night. I think full dosage is higher than this (before augmenting last time I had more) I have to monitor myself carefully and let him know how I'm doing. I have a severe case and body weight is a factor for dosage also. I have other issues as well and take tons of meds. Not fun for sure. :|

badnights
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Re: nerve injury

Post by badnights »

I agree with polar bear's concern. Most doctors, even neurologists who specialize in movement disorders, don't know how to handle RLS/WED. They have no idea what augmentation is really like; they don't know the agony it causes, and they don't know what causes it. The literature says augmentation may develop after a long time on DAs, whereas we know that it can develop within days (I am one who augmented in days; viewsaskew is another), and is much more likely to develop in people whose ferritin is below 75. That's why WED/RLS specialists recommend that we try to keep our serum ferritin above 100. Your neurologist it not likely to know any of this, and is also unlikely to learn it unless you point him in the right direction.

He isn't worried about your dose because he is used to prescribing that much and higher for his Parkinson's patients. He will not think it's a big deal for you to be taking 6 mg ropinirole daily, whereas an RLS/WED specialist will want to get you off of that dose as soon as possible.

The Foundation has 4 brochures on augmentation. The link in my signature line has section on how to get these. Don't bother with Augmentation: A Quick Guide; that's the level of knowledge your neurologist has already, and it's not helping you. Probably these two together would be best: Medication Withdrawal after Augmentation, and the FAQ. See the link in my signature line for more info.

The brochures describe a few approaches to treating augmentation. Your doc seems to have been trying one, which is to take a break from the DA for 10 days then to "re-assess". That method has rarely worked for people who post on this board - one person that I recall, only, is able to manage her WED/RLS long-term with a DA by taking frequent "drug holidays".

I think if possible you should print those two brochures, or all three, and highlight the parts that are most relevant to you, and bring them to your next appointment. You can ask your neurologist for his opinion about this information you found; direct him to the highlights, he won't have time to read much.


Interesting things to highlight:

From the Medication Withdrawal one:
"if you are able to stop taking the dopamine drug completely, restarting a dopamine medication at a later time will most likely lead to rapid recurrence of augmentation. Alternative treatments are alpha2-delta ligands, iron (oral or intravenous) and opioids"

From Augmentation: Diagnosis and Treatment, under What are predisposing factors...:
"However, if you are able to stop the dopamine drug, as with all of the above approaches that eliminate these agents,reinstating a dopaminergic medication at a later time will often lead to rapid reappearance of augmentation."

"Higher dosage of dopaminergic medications and low body iron stores
(as measured by a serum ferritin test) are two factors that have been
shown to increase the chance of augmentation".

And since they don't indicate what a "higher" dosage is, you might also print the paper by Buchfuhrer (2012) (also in my signature link), and highlight this part of it:

Both of these drugs should be started at their lowest dose
(ropinirole at 0.25 mg and pramipexole at 0.125 mg) and
increased if necessary every 5 to 7 days by their initial dose
until symptoms are controlled. Although the FDA-approved,
maximum doses for ropinirole and pramipexole
are 4 mg and 0.75 mg, respectively, many physicians exceed
this dose, especially when treating daytime symptoms that
may require 1 or 2 additional doses per day. However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, in the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole). However, augmentation may occur even at the
lowest doses of dopamine agonists.
- - From Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790

New maximum doses:
0.25 mg pramipexole
1.0 mg ropinirole
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.

tagalongbuddy
Posts: 16
Joined: Thu Feb 06, 2020 5:57 am

Re: nerve injury

Post by tagalongbuddy »

Thank you for the much needed information

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