Med resistant RLS

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.
dziner05
Posts: 5
Joined: Sun Apr 30, 2017 10:43 pm
Location: Portland, OR

Med resistant RLS

Postby dziner05 » Wed May 03, 2017 1:08 pm

I don't know what to do. I've tried all the meds available for RLS, and nothing works. I have it 24/7, it never stops. The only thing that works is Norco. I was on it for many years for a chronic pain condition. My RLS started about a year ago, and the Norco always made it stop, so I never thought much of it. Well, now my doctor has taken me off of it, due to the new regulations. I've seen a neurologist who has no clue how to treat RLS. I tried every med he threw my way, and nothing works. I know opioids are my only solution, but no one will prescribe them. I'm lost. I have a handful of Norco left, and once that's gone, there goes my life. I won't be able to work, or sleep, or function. I'm moving out of state next month, and haven't even been able to pack with all of the stress of this, along with the horrible side effects of all the meds I've tried. I'm hoping someone in the Chicago area can point me towards a doctor who truly understands RLS, and will also understand that mine is a tough case, and won't be resistant to prescribing opioids. I'm so scared.
-Christy

Rustsmith
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Re: Med resistant RLS

Postby Rustsmith » Wed May 03, 2017 2:34 pm

Your current situation with a doctor who will not prescribe an opioid due to government interference is my current greatest fear. There are a large number of us on this board who depend upon opioids for management of their RLS because the dopamines and the alpha-2-delta meds simply no longer work.

I do not know of a doctor in the Chicago area, but hopefully one of our other members can give you a suggestion. As an alternative, a number of us have found that we need to travel in order to see a doctor who understands the issues associated with the treatment of severe RLS. In this regard, a starting point is the list of RLS Foundation Quality Care Centers. The doctors at these centers all understand the needs of RLS patients and are willing to prescribe opioids when it is necessary. The only drawback of the centers is that demand is so high that it can take a couple of months before the first open appointment.
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.

ViewsAskew
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Posts: 14645
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Med resistant RLS

Postby ViewsAskew » Wed May 03, 2017 11:38 pm

I have been trying to find a doc in Chicago that 'gets' it for 15 years to no avail. I do know, however, that a new support group started in the Glenview area - their next meeting is....listed on the RLS Website and is tomorrow!

When: Thursday May 4, 2017
Time: 7:00 pm - 8:30 pm
Where: NorthShore University HealthSystem- Glenbrook Hospital
- NorthShore Neurological Institute Conference Room
This meeting Room in in the Doctor's Building just west of the main Hospital building on the second floor just take the elevator to the second floor and come to the waiting room
Topic / Speakers:The meeting agenda will include a short introduction by Bob Hartnett followed by a General Question and answer session on RLS hosted by Dr. Thomas Freedom NorthShore University HealthSystem- Glenbrook Hospital.

For more information or to submit a question in advance of the meeting, please contact Bob Hartnett at northernillinois@rlsgroups.org
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.

ViewsAskew
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Posts: 14645
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Med resistant RLS

Postby ViewsAskew » Wed May 03, 2017 11:40 pm

Hopefully someone at that meeting or the support group leader, Bob, will know of someone. Wish I did. I have actually flown to California to see Dr. Buchfuhrer for about 8-10 years and am in the process of moving there.

Also, lots of things to check - do you know your actual serum ferritin? Do you take any other medications? Do you have any other conditions that could affect it? We might be able to help reduce it in other ways.
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.

dziner05
Posts: 5
Joined: Sun Apr 30, 2017 10:43 pm
Location: Portland, OR

Re: Med resistant RLS

Postby dziner05 » Thu May 04, 2017 2:54 am

I actually found the most wonderful doctor at Northshore! I met with her today. Her name is Dr. Saltzman. She gets it!! She spent an hour with me, and was very thorough, and just a really nice lady. She prescribed Mirapex, which is the only med I haven't tried yet. She said if I don't improve within a few days on that, we would move on to opioids. So, I will try the Mirapex, and hope for the best. But, now at least I know that if it doesn't work we can move on to what I know does. She promised not to leave me to suffer. I have hope again!! :)
-Christy

ViewsAskew
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Location: Chicago

Re: Med resistant RLS

Postby ViewsAskew » Thu May 04, 2017 4:18 am

YAY!
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.

badnights
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Location: Northwest Territories, Canada

Re: Med resistant RLS

Postby badnights » Thu May 04, 2017 9:03 am

That's such a relief isn't it, to have a doctor who gets it!

Did she send you for a blood test to check your ferritin levels? If she didn't, ask her if you can get one ASAP. No one should be put on a dopamine agonist (like Mirapex) without getting a ferritin check and if it's less than 100 ng/ml, taking iron supplements (as long as there is no contraindication). The reason for this is that ferritin under 75 is strongly linked to a high risk of augmentation on dopamine agonists. There is also a clear correlation between increasing severity of symptoms and decreasing ferritin. So you should be interested in your ferritin levels even if you don't take a dopamine agonist, but especially if you do.

If your doctor or you want to learn more, there is a link in my signature below that leads to a page of download links. Some of these deal with the ferritin/augmentation issue:
Johns Hopkins Center for Restless Legs Syndrome.pdf
2012 _IRLSSG _Summary-of-RLS-treatment-recommendations-FINAL.pdf
Frauscher+ 2009 _Severity and augmentation assoc low ferritin.pdf

If you want just one, the Johns Hopkins one is a good general summary from a reputable source and mentions the ferritin minimum of 100 (highlighted yellow).

Since you're going to try Mirapex for at least a few days, you should know a few other things. The starting dose of Mirapex should be very low - 0.125 mg which is a half the usual 0.25 mg pill, and the maximum daily dose should not go over 0.25 mg. Not everyone will say this; but the doctors with extensive experience are in agreement (For example, see the 2012 Buchfuhrer download), because higher doses are more likely to lead to augmentation (or to lead sooner to augmentation).

If your symptoms begin to come earlier in the say, become more intense, spread to other body parts like your arms, or arrive more quickly after you sit or lie down, as compared to before you started the Mirapex, then you're probably suffering from augmentation. Augmentation is when your dopamine agonist medication actually makes your WED/RLS worse. When you take it, it deals with your symptoms but they come back sooner, stronger, eventually with a venegeance, and finally the Mirapex seems not to work at all. Most doctors are not familiar with this, and will increase your dose of Mirapex. Sometimes a small dose increase and splitting the dose (taking part of it earlier or later) can fend off the worst effects of augmentation but it never seems to be a long-term solution. The only long-term solution is getting off the dopamine agonist, at least for a time.

If you already augmented on another DA, you're more likely to augment on Mirapex. You mentioned that you had tried pretty much everything, but just to be sure I'll mention all the other dopamine meds commonly used for WED/RLS: Requip/ropinirole, Neupro/rotigotine, Sinemet/levo-carbidopa.
The anti-convulsants commonly used for WED/RLS: Horizant/gabapentin encarbil, Neurontin/gabapentin, Lyrica/pregabalin
Plus opioids are used as you know. If you use an opioid, ask for one without acetaminophen or ibuprofen added. Those substances don't help RLS/WED at all and just tax our livers and kidneys. Norco is hydrocodone and acetominophen, so you would want plain hydrocodone.

Good luck with your new experiment! It will be nice if you can keep the Mirapex dose low and don't augment! Don't forget to get your ferritin checked, to better your odds.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

dziner05
Posts: 5
Joined: Sun Apr 30, 2017 10:43 pm
Location: Portland, OR

Re: Med resistant RLS

Postby dziner05 » Fri May 05, 2017 10:40 pm

Thank you all so much for your replies! <3 Yes, I've had my ferritin checked, and it's only 25. I've been on iron supplements for a month now. The Mirapex was a complete nightmare. I took a 0.125 mg tablet at night just in case, and I passed out immediately. I woke up with an excruciating headache, and I was so dizzy and disoriented I had to call in to work sick. It also had no effect on my legs. So, the doctor has called in some Tramadol for me to try. I'm hoping and praying this works, because I am tired of being seen as a drug seeker. Norco + Gabapentin works great. But, they all resist the opioids. She did say that if this doesn't work we would move to hydrocodone w/out the tylenol. Fingers crossed for me friends! I just want my life back.
-Christy

badnights
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Location: Northwest Territories, Canada

Re: Med resistant RLS

Postby badnights » Sun May 07, 2017 10:08 am

Here's hoping the Tramadol works!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
Posts: 326
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Med resistant RLS

Postby legsbestill » Sun May 07, 2017 3:44 pm

Just to throw in another couple of options; have you tried neupro - a slow release version of ropinerole? Having been through an awful withdrawal after augmenting I'm not a huge fan of dopamine agonists but they can be very effective against rls and I just wondered if the slow release version would mean that you didn't get the same unpleasant side effects. Another possible option is kratom which I believe is not illegal in the US. I find it very helpful with my urge-to-move symptoms and worth having in for those occasions when nothing seems to cut it.

Good luck with the Tramadol anyway - it provides great relief to many.

ViewsAskew
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Location: Chicago

Re: Med resistant RLS

Postby ViewsAskew » Sun May 07, 2017 5:02 pm

legsbestill wrote:Just to throw in another couple of options; have you tried neupro - a slow release version of ropinerole? Having been through an awful withdrawal after augmenting I'm not a huge fan of dopamine agonists but they can be very effective against rls and I just wondered if the slow release version would mean that you didn't get the same unpleasant side effects.


Can only share my experience. The side effects of pramipexole and rotigotine (Neupro in the US) were almost identical for me. Not sure which receptors they each hit - pramipexole and ropinerole hit some of the same and some different dopamine receptors. I cannot remember which ones rotigotine hits.
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.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: Med resistant RLS

Postby leggo_my_legs » Fri May 19, 2017 6:01 am

Christy, so glad you found a good doctor locally! I have PMLS and find Tramadol is helpful. I hope it helps you too. Tramadol also gives me heart palpitations if I use it too much, so I alternate it with Norco. I became tolerant to Norco so I may be looking at methadone. For some reason my doc is jumping from Norco to methadone. She is concerned about prescribing opioids.

Maybe you will be able to find a good doctor in your new state too.

You're not alone--I felt weird and yucky on any dopamine med I tried! I didn't try any of them for long. Maybe the side effects would have gone away but I just didn't like them.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Med resistant RLS

Postby ViewsAskew » Fri May 19, 2017 6:31 am

leggo - it makes sense to me (a layman) to go to methadone. When you rate opioids as weak, moderate and strong, only two are in the moderate - tramadol and hydrocodone (which is in the Norco). The only choice is a strong one - and only a few have a long half life. That half life helps us SO much. Plenty of other reasons to choose it - if you are a member of the Foundation, log in and watch the webinar on opioids. Extremely informative and helpful.
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.

srgraves01
Posts: 38
Joined: Wed Apr 24, 2013 4:34 am

Re: Med resistant RLS

Postby srgraves01 » Mon Jun 12, 2017 8:17 am

I had the same problem. My wife who is a nurse suggested I consult a pain management specialist. I took some literature from this website to educate them and they have been treating me since then. Hope you can solve your problem.

Steve

ViewsAskew
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Re: Med resistant RLS

Postby ViewsAskew » Mon Jun 12, 2017 5:33 pm

srgraves01 wrote:I had the same problem. My wife who is a nurse suggested I consult a pain management specialist. I took some literature from this website to educate them and they have been treating me since then. Hope you can solve your problem.

Steve


Several people have - I have always wondered how easy/hard it is to convince them. Did they have many questions for you or any issues with it?
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.


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