Navigating care…do I go back on DAs?

[Margaret122maryL]

I was on pramipexole for 10 years, was up to 0.75 mg, then recognized augmentation (daytime severe symptoms as well as night time symptoms) and went through the misery of withdrawal. MY primary care physician wanted to me increase the dose rather than wean off, but I had read enough to know that that would only make augmentation worse. I got through weaning with the help of Tramadol and with the help of this forum. I am okay now. Not great—some breakthrough twitches, some interrupted sleep, some lingering depression—but okay. Acupuncture helps for a week or two. Currently taking Tramadol ER 100 in late afternoon, Tramadol 50 at bedtime, Nortriptyline 10 mg at bedtime ( I don’t notice much after adding nortriptyline but I take it to appease my primary care since I won’t take her advice about going back on pramipexole and I need my primary care.) I also take an Ambien 5 mg, whole or a half tablet, whichever will work. I have a virtual consult with Mayo Sleep Center next week. YEAH! My primary also wanted me to see a local neurologist, so I did that today. Now I am SO CONFUSED. I brought with me a copy of the latest algorithm, (he didn’t look) I wrote out my history, etc. All he wanted to do was restart a dopamine agonist. Claimed it is “The Gold Standard” for restless legs and has been for years. He said he has treated many patients with RLS and has never seen a DA bite back, never seen augmentation. He says my brain needs the dopamine agonist. He noted that my ferritin levels are low normal, but still normal and he would not recommend iron infusion. I see on this forum that some people do go back on DAs, low dose, perhaps with Tramadol or something else, but I refused to go down that road on the advice of someone who has never seen augmentation. Am I being stubborn? Who will take care of me if I don’t go along with their recommendations? Will any local MD respect the opinion of a Mayo MD? If the Mayo MD suggests different meds, or iron infusion, who will help me? Any input or encouragement is welcome.

[Rustsmith]

Margaret, what you are doing is exactly what I would do if I were in your position. Here are my suggestions:

1) don't make any moves until you have been through your virtual consult with Mayo next week. I suspect that you will not hear anything surprising from them.
2) After you have talked to Mayo, visit with your PCP again to report on your visits with the local neurologist and Mayo. Emphasize how the local neurologist didn't even bother to look at the updated info from Mayo and where his recommendations conflict with what Mayo told you.
3) tell your PCP that you will not be going back to the local neurologist because 1) his information is 20 years out of date and 2) his comments about augmentation conflict with your past experience with pramipexole and 3) due to the pain and suffering you experienced with pramipexole in the past, you refuse to go down that road again.
4) Once you have done all of that, decide whether you can continue to work with your PCP. If your PCP agrees to follow directions from Mayo for treating your RLS, then you are all set. If your PCP decides to believe what your local neurologist said rather than Mayo, then start looking for a PCP that is interested in both learning about RLS and doing what is in your best interest.

[Margaret122maryL]

Thank you, Steve. I needed someone to tell me I am not being stubborn. It is confusing when doctors say they want you as a partner in your healthcare and then dismiss your concerns. I feel better.

[stjohnh]

Do what Steve said.

[Polar Bear]

You are not being stubborn. Well done on getting off your pramipexole.
Often we have to fight our corner and do some educating of our Primary Doctor.

[Margaret122maryL]

Thanks, all, for your support. I do not know how you do it…I stay away from this site most of the time because I get discouraged by all the suffering. Yet, you—who have also suffered—are there when I need you.

[Yankiwi]

Please don’t be discouraged, be encouraged by all the information that has helped so many.
I have learned so much and am well informed when I see my PCP.
I’m still up for a third of the night in segments but I know coping with that and not increasing my medications is my choice and I know my options for the future.
Best wishes to you.

[lsinrod]

Do not take Nortriptyline. It makes RLS worse. The best antidepressant for RLS isWellbutrin. Your doctor said your ferritin was low normal. Did you get an actual number as what is normal for normal folks is not normal for RLS. If you did get a number, what was it?

[debbluebird]

I wouldn't even take Wellbutrin as well as the norteiptyline. You may want to consider Gabapentin. I've had RLS since 1990.
I augmented with pramipexole. I took it for about 10 years. I tried going back to it and I couldn't do it. In addition to the augmentation, the pramipexole made me sleep fewer hours. After stopping the DA, I took methadone for 12 years. It worked, but now I don't have a Doctor who will prescrib it. I weaned off a year ago.
I take gabapentin, a tramadol, one tizanidine, THC gummies and I have a Spinal Stimulator. I have severe RLS. The times that I didn't have it under control, the RLS got worse and became spasms. I no longer have the spasms. When I do have some RLS it's now mostly mild.
Yes, find out what your lab number is for the Iron. The people here who get the infusions, do very well.
My RLS is up and down. I mostly have good nights now, with an occasional difficult night. I had surgery 2 months ago and whenever I have surgery my RLS always gets worse.
Good luck

[Margaret122maryL]

Thanks for all the input. It is tough to go through this alone, and to see eyebrows raise when a doctor or nurse sees that I am on Tramadol—a total of 150 a day.

had a virtual consult with Mayo Clinic last week. It was great to talk to a doctor who knew about augmentation and congratulated me on getting off the DAs. He did not suggest getting back on them unless there was nothing else—and then only to “buy time.’ I think what he meant was…when I am 98 years old or have some terminal illness. He looked at my iron levels—I do have the numbers, they have fluctuated over the past 18 months and now my ferritin is up—from 68 to 118. The high level may be influenced by arthritic inflammation and/or recent minor surgery on my wrist but the Mayo doctor said the iron sat % is high enough (I forget the numbers) so he would not at this time suggest an infusion. Maybe if the ferritin level goes back down.

He did suggest building up a dose of gabapentin and when I am at a dose I can tolerate—300 mg a day is his goal— then wean off tramadol.Like you, he said to get off the nortriptolyine.

Re: gabapentin. I have the prescription but haven’t taken it. I got worried when I read about the side effects—especially depression. I have never been a depressed person, but getting off the DAs put a cloud over my head. It is mostly gone now and I don’t want to invite it back. I’d be interested in hearing if any of you have experienced depression from gabapentin. I’m also a bit concerned about weight gain. I was borderline Diabetes #2. I lost 10 pounds when I went off the pramipexole and don’t want them back, though I would tolerate weight gain and diabetes better than I would tolerate a return of severe RLS.

I intend to change one thing at a time…go off the nortriptoline for a week before I start something else.

For what it is worth— I have a noticeable and predictable response to acupuncture. I feel awful for a day or two after treatment, then improve greatly. Last week, the acupuncturist only used 4 needles and I was tired, dopey, and overall uncomfortable for two days. Then I felt great. That’s the way it has been going. I’d like to experience the good response without the bad one. It seems wise to not introduce gabapentin until I have that straightened out—if it ever does get straightened out.

Acupuncture is both expensive and time-consuming but I have to say this—it depends on who you go to. I first tried it 10 years ago. That acupuncturist used many, many needles and he attached some to a TENS unit. It was relaxing, but there was no improvement. My current acupuncturist does strange things with herbs and crystals while he senses the energy flow in my arm. Then he decides where and how many needles I need. It seemed very strange at first and I was skeptical, but since the pattern of crisis followed by improvement repeats itself with every treatment I have to say I’ve become a believer. I know he can’t cure me, but I hope I can soon limit my visits.

A note to Yankiwi—the South Island is one of the most beautiful places we have visited and the Milford Track was one of our favorite adventures. I used to be able to do such things! Now, I can’t imagine that long, long time on an airplane.

[lsinrod]

I would not worry about gabapentin causing depression. That is not a common side effect. And if it does, you can stop the gabapentin right away at only 300 mg. I gained a couple pounds on gabapentin, but I am taking 1500 mg.

[Polar Bear]

Margaret1122mary1 - It can be infuriating when a health care worker is not understanding of particular medications or the doses prescribed. Fortunately I haven't come much of it here in the UK. Just once when I changed my GP (after being with the previous one for 45 years) and the new GP thought she'd have a shake up and greatly reduce my RLS meds. This was via a telephone appointment, she had never even met me. After admitting that she had only ever heard of RLS and I bombarded her with facts gleaned from my 35 years of RLS suffering, and from years of information gathered from this Discussion Board, she backed down.
My point being that we really do have to fight our corner and that includes 'raised eyebrows'.
And about your Mayo Clinic appointment - wonderful - I'll bet you wanted to jump for joy, maybe you did.

300mg Gabapentin is not a high dose, it will be interesting to see if it is sufficient to cover your symptoms.
Please ensure that reducing any medication/Tramadol is done slowly.
Most medications are scary if you read the side effects. I can only speak from my own experience. I take Pregabalin which is a sister drug to Gabapentin but the Pregabalin is 6xtimes stronger. I take 600mg Pregabalin which equates to 3,600mg of Gabapentin. Your prescribed dose of Gabapentin equates to 50mg of my Pregabalin. My Pregabalin helps with RLS and Neuropathy. I am unaware of having any awful side effects but can only speak for myself.

I have only once, many years ago, tried Acupuncture, without much success.

[lsinrod]

You never said what your ferritin was. "Low normal" for regular folks would be much too low for rls. Do you know your ferritin number? If so and you can post it, I can advise you what to do.

[Margaret122maryL]

Thanks for your interest:
August 2019: Ferritin was 65.2 ng; iron sat was 32%, Iron 109.0 ng; IBC 345.0. Ng (this was different lab from those below)
August 2021: Ferrit was 95.6 ng; iron sat was 38%; iron 126 mcg., TIBC 330 mcg.
January 2022: Ferritin was 118 ng; iron sat was 33%; iron 107 mcg; TIBC 324 mcg.

The 2019 results were from oncologist, before I started letrozole for DCIS. The 2021 results were when I had just withdrawn from pramipexole. The 2022 results were a week post-surgery for tendon release in wrist.

[lsinrod]

Surgery can cause your ferritin to go up post surgery, and iron and TIBC to go down, so the 2021 results are probably more accurate. I would continue to take your iron. I assume you know to take it at least an hour before a meal or coffee and at least 2 hours afterwards. Great on see the Mayo Clinic, and like the others congratulations on getting off the pramipexole .