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Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Tad4k
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Joined: Wed Dec 05, 2018 12:51 pm

New to this group

Postby Tad4k » Thu Dec 06, 2018 4:44 pm

I am new to this group but not new to RLS. I have had rls for probably 20 years. My sleep study back then indicated that I had an average of 100 leg movements an hour. I was seeing a pulmonologist who started me on pramipexole. That helped me quite a bit, but after a year or so my RLS got worse again. The doctor said I needed a "honeymoon" from the medication so she said to stop it and make appointment to see her in a month. I stopped talking the pramipexole. I didn't sleep for 36 hours. I couldn't even sit in a chair much less lay in bed. After a call to my PCP, she put me back on the pramipexole. I found a neurologist from the rls.org website and went to see him. He said the doctor should not have stopped the pramipexole cold turkey. He said I should probably never stop the pramipexole. He added Clonazepam to help me sleep at night. Over the years my RLS symptoms began to start earlier and earlier in the day. Eventually I was taking .5mg of pramipexole 3 times a day and 1mg of Clonazepam at bedtime. When I was in the hospital for an unrelated problem they said I really shouldn't be on Clonazepam long term and changed Clonazepam to Lunesta at bedtime. I continue on the pramipexole 3 times a day. 3 years ago we moved from the Twin Cities in MN to a rural town in Wisconsin and my current PCP does not have any answers for me when I tell her that my RLS is getting worse again. I have some chronic hip pain and it seems like when my hip pain acts up my RLS gets worse.

Rustsmith
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Re: New to this group

Postby Rustsmith » Thu Dec 06, 2018 8:32 pm

The maximum recommended dose of pramipexole to treat RLS these days is 0.25mg/day. At a combined total of 1.5mg/day and with the symptoms that you describe, you are almost certainly experiencing augmentation, which is a side effect that is specific to RLS. Take a look at our forum on Augmentation to learn more about it. But at this point, you need to see an RLS expert who can safely get you off of pramipexole and onto a different treatment. You already know that this will be difficult, but use of an opioid will help. And at this point, the expert might want to have you on a low dose opioid for your RLS. Finding an expert to help you may be challenging. Take a look at the list of Foundation's Quality Care Clinics. Mayo is probably the closest to you. Be prepared for a wait of several months for an appointment since demand is high.

Another suggestion is to get a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, et al. It costs about $35 on Amazon. Although it was written for doctors, it is understandable by those of us without medical training. If your current PCP is willing to learn (some are not and others are grateful for the opportunity), you can highlight a few of the relevant sections and then share it at your next 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.

stjohnh
Posts: 911
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to this group

Postby stjohnh » Thu Dec 06, 2018 11:21 pm

Tad4k, Welcome, you have come to the right place. Steve gave you excellent advice. The problem I see is that you are augmenting, like Steve says, and likely it will be impossible for you to wait several months to see one of the Quality Care Clinic specialists. First, I would make the appointment like Steve suggests. Then... Well, I was going to say get some kratom, but I checked and it is not legal in Wisconsin. Perhaps you can see the neurologist you saw before, even though it is a ways away, hopefully get a prescription for an opioid and instructions on pramipexole dose reduction. You are really between a rock and a hard place. Unfortunately your story is very similar to that of many of us here. Too high doses of pramipexole and dealing with the augmentation and fall out from that.

Folks here may be able to give you better advice if they had a few more details about your situation. How much pramipexole are you taking now? What other medicines (both prescription and non-prescription) are you taking for any medical problems? How much sleep are you getting now? Do only your feet have the jumping sensations (urge-to-move symptom)? Are you taking iron tablets? Have you had a ferritin blood test? If so, what was the number for the ferritin level? What time of day do your feet bother you?

If your PCP is at all agreeable to learning about RLS, you might get her a copy of the book Steve suggested. What you need is not really all that complicated, it's just that many doctors are not well informed about these problems. What you need is: 1. Get ferritin checked (this is a check for iron. RLS is caused by low brain iron). 2. Very slowly cut back on the pramipexole while simultaneously taking an opioid like hydrocodone so that you can sleep at least a little while you are getting off the pramipexole. 3. When off the pramipexole, you will need to treat the RLS. Likely you will need an opioid long term. If you see an RLS specialist you may be able to get an IV (intravenous) Iron treatment. This helps many people with RLS. I'm sorry to say, but you almost certainly have a miserable couple of months ahead of you. It will get better though.
Blessings,
Holland

Tad4k
Posts: 6
Joined: Wed Dec 05, 2018 12:51 pm

Re: New to this group

Postby Tad4k » Fri Dec 07, 2018 5:10 am

Steve and Holland, thanks for your quick responses. I do believe that I have augmentation and do plan on trying to get an appointment at Mayo. I also ordered the book referenced. I am a nurse so don't anticipate any problems with medical based content. I have an appointment for an annual physical in a couple of weeks and I plan to discuss with my PCP.
Holland, I currently take .5mg of pramipexole 3 times a day. I also take furosemide, spironolactone, gabepentin (400mg twice a day), atorvastatin, Omeprazole, Lunesta, B12, folic acid, calcium and vitamin D.
I do understand about ferritin levels. 20 years ago mine was 7! My PCP started me on iron supplements and checked my ferritin levels regularly. My dose had to be increased several times over the next several years to keep ferritin levels over 100. 3 years ago my ferritin level was 450 and new PCP told me to cut iron dose by half. The next year it was 400. She told me to stop iron and she rechecked in a month. Ferritin level was still the same so she sent me to a hematologist to see if I had hemocromotosis (body makes too much iron). Hematologist said it was from inflammation. I was having a great deal of pain from my hip at that time. Later when hip pain better my ferritin level was 195 on no iron. Still on no iron and will get it checked again in a couple of weeks.
I get RLS symptoms in both legs (one side at a time but could be either side) calves or thighs at any time of day. Taking pramipexole 3 times a day helps but makes me sleepy. I get 4-6 hours of sleep a night. I take Lunesta (sleeping pill) every night.
I think I have answered all of your questions. Thanks for the suggestions and support.

Deb

stjohnh
Posts: 911
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to this group

Postby stjohnh » Fri Dec 07, 2018 2:36 pm

Deb,

Ferritin is an acute phase reactant. That means that it will be artificially elevated if there is any irritation/inflammation anywhere in the body. Current recommendations for IV Iron infusions are that it may be used for people with ferritin below 300, as long as other iron tests show no excess iron. Remember that the usual "normal" ranges for ferritin refer to the amount of iron in the blood and have almost no correlation to the amount of iron in the brain. RLS patients have low brain iron, even though most have plenty of iron in the blood. It would probably be good for you to get a full iron panel to help clarify the meaning of the ferritin of 195. It is possible you are low on iron everywhere, both brain and blood.

Your symptoms are a little different than the usual RLS patient. While it certainly can occur in one leg at a time, the majority of people have symptoms in both legs simultaneously, especially if the RLS has been present more than a few years. Not only that, it is almost always worse in the evening, even if it also occurs earlier. Diagnostic criteria for RLS includes the requirement that if a person with RLS has urge to move symptoms, they must improve immediately on getting up and walking around. Is it possible you have something else that is not RLS?
Blessings,
Holland

Tad4k
Posts: 6
Joined: Wed Dec 05, 2018 12:51 pm

Re: New to this group

Postby Tad4k » Fri Dec 07, 2018 4:10 pm

Holland,

When the ferritin was 195,
Iron 100
TIBC 368
%saturation 27%

So ferritin should be over 300? Alot has changed over the years. They used to want ferritin over 100. I often wondered when current PCP said to stop ferritin completely. I wonder what it is now. Again my current PCP doesn't seem to know anything about RLS. So I have my work cut out for me in trying to educate her also.
I have always had symptoms in only one leg at a time. I may have had a couple of times of symptoms in both at same time. I guess I need to clarify. My symptoms are definitely worse in evening but have been present earlier and earlier in day over the years. They do get better by getting up and moving so sometimes I have to watch TV in evening standing and pacing or at least moving weight back and forth between legs. I am sure I have RLS!! Have had it for 20 years! Especially with a previous sleep study with average of 100 leg movements an hour! I have struggled to ride in the car or airplane, had to get up from bed to pace and haven't been to a movie theater in years because I can't sit that long. Can't drive in evening because of leg symptoms or if I take pramipexole RLS will be better but I will have trouble staying awake.
I guess I haven't researched RLS in years and there seems much to learn again.

Deb

stjohnh
Posts: 911
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to this group

Postby stjohnh » Fri Dec 07, 2018 4:43 pm

Deb,

Yes, currently it is recommended that the ferritin be above 75 or 100. Those that have ferritins less than that MAY respond to oral iron, though most don't. Again, the blood ferritin tells us next to nothing about brain iron. The reason IV Iron is not recommended for those with ferritin above 300 is not that they have enough brain iron, it is because additional iron, if a person has a ferritin over 300, may cause iron overload (hemochromatosis). RLS is thought to be primarily a problem in which iron in the blood doesn't get properly into the brain. For unknown reasons, some but not all people, can increase their brain iron by IV Iron infusions. There is currently no known way a doctor can safely determine if a living person has adequate brain iron, though researchers are trying to solve that problem. We know that people with RLS have low brain iron from studies done on RLS patients that have died and allowed their brains to be analyzed after death. Additionally there are animal models of RLS that confirm low brain iron is likely to be the culprit that leads to a series of abnormalities (excessive dopamine, abnormal adenosine metabolism, abnormal glutamate pathway metabolism) that cause the main RLS symptoms (urge to move and sleep abnormalities).

Different organs in the body have different iron requirements. Most doctors do not know that. The lab reports a "normal" ferritin level usually as a range, typically about 20-500. This indeed is a normal blood level, but it tells us nothing about the iron levels in the brain.

Thanks for the additional information about your symptoms. It does sound like you really have RLS.

Something you should know, a sleep study cannot diagnose RLS. Your sleep study almost certainly showed you have PLMS (periodic leg movements of sleep). This is a problem in which the legs jump while asleep. It is not the same as RLS. Most people with RLS do also have PLMS, but many people without RLS also have PLMS.

I too haven't gone to movies in years, avoid long car rides and plane flights (especially in the evening) and my wife has a completely separate evening life than I do, since I can't participate in most evening social activities. A nasty disease.
Blessings,
Holland

Tad4k
Posts: 6
Joined: Wed Dec 05, 2018 12:51 pm

Re: New to this group

Postby Tad4k » Fri Jan 11, 2019 6:57 pm

I now have an appointment scheduled in March at Mayo Clinic sleep center in Rochester, Minnesota. I have a 90 minute appointment with one of the sleep doctors then a sleep study scheduled for that night. I have another appointment scheduled with the doctor the following morning to review results of the sleep study. The doctor that I have the appointment with does not have RLS listed as a specialty on her Bio but is one of the doctors in the sleep center. I feel that I would have to wait months longer to get one that lists RLS as a specialty. Any thoughts on the doctor or what might occur in a 90 minute evaluation? I was told when referral was received at Mayo that the doctor would review my records when received and decide if she would accept me as a patient. They then called back after a week or so to confirm the appointments and sleep study.scheduled.

Deb

Rustsmith
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Re: New to this group

Postby Rustsmith » Fri Jan 11, 2019 8:12 pm

Deb, what you can expect during the appointment involves a number of things. You will probably be given a normal neurological exam in order to rule out other conditions. You will also be asked a number of questions about how often your symptoms occur, what time of day they begin and how much they influence your life. You will probably also be asked questions about your sleep, how well you follow normal sleep hygiene habits and things like how likely you are to fall asleep in certain situations. They may even ask about things like depression and how well you can carry out your normal daily activities.

I wouldn't be too concerned that the doctor doesn't list RLS in her bio. Since she is part of the center, she either has the training or has access to one of the other doctors who does. These new patient appointments are often handled by one of the newer members of the staff who hasn't yet reacted the "expert" level of experience. They collect the data and then determine through the sleep study and your exam whether you need to be referred on to an expert in sleep apnea, RLS or something else.

When I first saw my current doctor, I looked at her bio too and was also surprised that she didn't list RLS. She was part of the clinic's screening group of doctors. But once we met, I quickly realized that she was fully "up to speed" on RLS as well as sleep medicine. It turns out that she does research into both RLS and sleep, I suspect that the problem is that they haven't updated her bio for a while.
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.

Tad4k
Posts: 6
Joined: Wed Dec 05, 2018 12:51 pm

Re: New to this group

Postby Tad4k » Fri Jan 11, 2019 9:32 pm

Steve,
Thanks for the quick response. I am hopeful that she will be able to help me with my RLS.

Deb

badnights
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Re: New to this group

Postby badnights » Sat Jan 12, 2019 7:25 am

Hi Deb
I haven't talked to you before now but I noticed some things in your thread that I would like to address.

While it certainly can occur in one leg at a time, the majority of people have symptoms in both legs simultaneously, especially if the RLS has been present more than a few years. Not only that, it is almost always worse in the evening, even if it also occurs earlier.

Actually, when you are heavily augmented, symptoms can happen any time of day and are so bad it is impossible to tell if they're worse in the evening or not. Also it is quite common for symptoms to be unilateral.,

Different patients will need different amounts of ferritin. Until a better method comes along, the specialists who pioneered the iron infusion method for WED/RLS say that they give repeat infusions until symptoms stop bothering the patient, or until the patient's ferritin levels hit a max that makes the doctors uncomfortable, 300 for some but as high as 500 for others.

Probably what's happening with your ferritin is that your oral iron supplements raised it from 7 to over 450. (What dose of what kind of iron were you takinG?) When you cut your dose in half, wthin a year your ferritin had dropped by almost 20%. That is typical of RLS/WED - we drop iron so we need to constantly consume it. Then when you stopped completely, it fell even more, probably to a level that instigated worse symptoms. The actual damage to your iron stores was probably masked by inflammation in your hip which disguised the true extent of the problem by "artificially" raising ferrtin to 195.

Possibly 450 mg ferritin was your sweet spot, when symptoms don't bother you. Maybe that;s where you need to go, and reduce pramipexole when you get there. That might reduce or eliminate the need for an opioid to get off the pramipexole,

But you need the right doctors on board, either by finding them as they are or by educating them to a level of knowledge and willingness that will work in your favor.

Keep digging for knowledge and asking questions - and asking for the answers to be clarified, accepting that some doctors won't have answers to some questions. You will do well. You need to get over the next little while, and prepare for a better world.
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.

legsbestill
Posts: 535
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: New to this group

Postby legsbestill » Mon Jan 14, 2019 12:00 pm

Please tell us what iron supplement you were taking. I would love to get my serum ferritin to over 100.

Tad4k
Posts: 6
Joined: Wed Dec 05, 2018 12:51 pm

Re: New to this group

Postby Tad4k » Fri Jan 25, 2019 3:53 pm

Legsbestill, I was taking Vitron C twice a day. It contains vitamin C as well as iron because vitamin C increases absorption of iron. My most recent ferritin level was126. Still on no iron supplements at this time. Beth, thank you for additional information. I keep hoping that my appointment at Mayo in March will provide some answers and some relief.

Deb


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