nerve injury

[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]

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?

[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]

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.

[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]

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.

[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]

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

[tagalongbuddy]

Thank you for the much needed information

[Jerker]

I just read your post and find it interesting. My rls symptoms also got much worse immediately following knee replacement surgery in August 2020. I had switched from ropinerol to a Neupro 2 mg. time release patch to insure that I would not jerk and compromise the surgery. That worked well but I then developed a severe itching where the patch was applied. The assumption was that the adhesive caused the itching. Returned to Requip 4 mg. + Gabopentin 300 mg. Itching continued and the Gabopentin caused flushing and stuffy sinuses.
Dopamine agonist augmentation advanced to the point of taking carbadopa/levadope 25/250 at 4PM,8PM,11PM and 2AM. Three weeks ago I had an appointment with Dr. Rao at Johns Hopkins which has given me some hope. I have begun a plan for for gradual withdrawal but am dreading what I might experience in the next 8 weeks. Johns Hopkins literature says of the final 10 drug-free days. "You will experience horrendous, severe rebound of your restless leg syndrome symptoms. It is guaranteed that for the first 48 hours you will gat absolutely no sleep." Yikes!
I am leery of how my local neurologist will assist during the withdrawal period. He seemed insulted that I had gone over his head and sought out expertise at Johns Hopkins.

[tagalongbuddy]

Hello Jerker,
I will write you today when I have time. I wrote a lengthy reply, then lost it when had an interruption. Lori

[tagalongbuddy]

Hello Jerker,
I was given a femoral nerve block both during the knee replacement and again when manipulation was performed 5 weeks later. (2013) It was a nightmare. I didn't know until after the manipulation that injecting my nerve (and leaving needle in there for duration of operation) was a nerve injury, general anesthesia is not a problem for me---(had that as well) Long story short, after I ended the narcotics for major pain a month or two later...........
I started getting strange and very uncomfortable sensations in my legs. I had to walk, could not sit or lie down at times. I thought it was a reaction from ending the oxycodone. The doctor said no and suspected RLS. He was right. The oxycodone masked over the symptoms, that's why the sensations were unknown at that time. But the doctors only want to use narcotics as a last resort. Pramipexole was started, augmentation after a couple of years, then switched to ropinirole, few more years, then augmentation again and back on it again along with gabapentin. Holding steady at the moment. During the washout period from augmentation (slowly) both times the neurologist had me do 10 days of oxycodone. I did NOT have a hard time--only the first night. I must say oxycodone is very successful for me regarding RLS and pain (other conditions)
I think you are now in good hands at John Hopkins. What is the protocol for the next 8 weeks? I hope it will not be as severe for you as suggested.
Let me know how it's going. I know it is a process. Take care. Lori

[tagalongbuddy]

Hello Bob! Was that you in the RLS support group? That was great to put these words and face together! Lori

[tagalongbuddy]

For about two years now, the neurologist slowly took me off the DA and increased the gabapentin. It has been pretty effective.

[Polar Bear]

It's good to hear from you again. Thank you for letting us know how you've been getting on. I'm so glad your treatment is effective.