Need advice

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.
James7
Posts: 33
Joined: Fri May 10, 2019 8:06 pm

Need advice

Post by James7 »

I need advice. I am taking a cocktail of sorts and I see a RLS specialist at one of the RLS centers. I am young at 52 years old. My dad has Parkinson's and RLS seems to run in the family, but my case is the most severe. I need advice. What do you guys think of my regimen? I will post the times and doses. I have tried NUMEROUS meds titrating up. My iron levels per my RLS specialist are fine. The meds seem to do no good after a while without increasing the dosages. I watch my diet and am physically fit. I do not eat gluten and eat a low glutamate diet. I work (as a business professional) and need to have a functional brain. For example, Lyrica is NOT an option because it greatly affects my ability to think. I do NOT like the opiods, but they seem to be the only thing working. My dr is saying I need to go see a psycologist to help with stress, rather than taking more/diff meds. I am not NOT sleeping due to stress (though sometimes that may be true), I'm stressing because of not sleeping. I am easily awoken (I always have been) and the movements wake me. I get up and walk, I walk before bed, etc. Would some of you look at what I'm taking and give me your advice? I feel I need help. Last night I only got 2.5 hours sleep. My wife said anything less than 5 hours would have caused her to call in sick....and it was trying at work today.

Here's what I take:

5:00pm:
1 dipyramidol 75mg

7:30pm:
1 dipyramidol 75mg
1 mirapex .25mg
1 lyrica 100mg

8:30pm:
1.5 buprenorphine 2mg
1 Tramadol ER 100mg

at 10pm or bedtime take:
1 dipyramidol 75mg
2 tramadol 50 mg each
1 clonazepam 1mg
.5 buprenorphine 2mg

take extra tramadol or clonazepam if not sleeping

1. What do you think I need to change?
2. And, is this a lot of medicine? I think all the various meds are a lot, but I'm unsure if the dosage of any one med is a lot.
3. I am a male and have a lot of hot flashes/sweating episodes of late. Is this from the medicine?

Thanks!

debbluebird
Posts: 2179
Joined: Mon May 21, 2012 3:27 pm

Re: Need advice

Post by debbluebird »

Is it possible that you are augmenting with the mirapex ? How long have you been taking it ?
When I was taking 5 different meds after my mirapex augmented, I was switched to methadone, but that's not always the answer. I was able to stop all my other meds.
What is your iron level ?

James7
Posts: 33
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

I've been taking mirapex for about 1.5 years. My iron level is 72mcg and ferritin is 87ng. I start a new med and get better sleep for about 3-5 months and then symptoms worsen again. Sleep is my goal.

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need advice

Post by ViewsAskew »

Hi James7 - I am not thinking correctly (meds working and I was up early today). What I'd like to know if what meds you started on, how long did you take it at that dose, then what/how much you added, and when. Also - what symptoms dp you have taking this combination? Do you still have an urge to move every night? Do you awaken a lot every night? How much sleep on average? Etc. If it is all like last night, it becomes quite hard to work. Oh - and who do you see now? A specialist or GP? And, if a specialist, what reputation does this person have? For example, one of the RLS Quality Care Center docs vs a local specialist with a good local rep vs a local specialist that you were given through insurance?

I completely get the issue of how the movement issue makes you stressed, not vice versa. It becomes quite the vicious circle. I've really experienced that with stress and depression. That said, I DO find that using cognitive behavioral techniques does help me with both. If nothing else, it helps me deal with the RLS/WED and PLMS better.

So sorry it's bad for you now.

Serum iron (assuming that is what that is) is fine, but ferritin is definitely not high, especially since you are using pramipexole. I cannot take pramipexole more than a week or so without augmenting unless my ferritin in over 100. Closer to 300 and I can take it for 6 months without issue. When it is under 100, I augment in a few days.
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.

stjohnh
Posts: 1153
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Need advice

Post by stjohnh »

James,
Are you taking the dipyridamole for RLS? If so, was it suggested by your doc or some other way? It was effective in a very small demonstration trial but would be considered experimental by most docs. Does it help?

Your ferritin indicates your BLOOD iron is fine, however that is not the same as BRAIN iron. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

Rustsmith
Moderator
Posts: 5078
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Need advice

Post by Rustsmith »

Your combined meds are not that different than mine. Your use of buprenorphine is where I am hoping to go in about six months (I have to rotate opioids due to side effects from each). So I don't really have any suggestions beyond that you can try tweaking some of the doses to see what might help.

As for the psychologist for stress, I am starting down that road later this week. My issue isn't stress, it is depression. I am sure that the doc will try to say that there is a stress component, but my stress levels now are nothing like what I felt while I was working (senior engineering executive). I don't know what will come of it, but I have to give it a try since there aren't many other options open for me.
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.

James7
Posts: 33
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

ViewsAskew wrote:
Tue Aug 25, 2020 6:23 am
Hi James7 - I am not thinking correctly (meds working and I was up early today). What I'd like to know if what meds you started on, how long did you take it at that dose, then what/how much you added, and when. Also - what symptoms dp you have taking this combination? Do you still have an urge to move every night? Do you awaken a lot every night? How much sleep on average? Etc. If it is all like last night, it becomes quite hard to work. Oh - and who do you see now? A specialist or GP? And, if a specialist, what reputation does this person have? For example, one of the RLS Quality Care Center docs vs a local specialist with a good local rep vs a local specialist that you were given through insurance?

I completely get the issue of how the movement issue makes you stressed, not vice versa. It becomes quite the vicious circle. I've really experienced that with stress and depression. That said, I DO find that using cognitive behavioral techniques does help me with both. If nothing else, it helps me deal with the RLS/WED and PLMS better.

So sorry it's bad for you now.

Serum iron (assuming that is what that is) is fine, but ferritin is definitely not high, especially since you are using pramipexole. I cannot take pramipexole more than a week or so without augmenting unless my ferritin in over 100. Closer to 300 and I can take it for 6 months without issue. When it is under 100, I augment in a few days.
Hello, ViewsAskew....thank you for responding.

LYRICA: Before I started seeing my current Dr., (an RLS Specialist at one of the Quality centers...you'd know him if I said his name), I was taking Lyrica 600mg and Mirapex-.25mg. Lyrica--I was a zombie. I could not function well in my job due to a lack of memory and lack of sleep at times. I went as high as 600mg of Lyrica a night. I originally started taking Lyrica in a low dosage around Oct. 2018, increasing every couple of months or so. I felt like a crazy person needing to do that, and I hated NEEDING to take medicine for the side effects it gave. By the summer of 2019, I was on 600mg. I tapered off the Lyrica beginning Oct. 2019 and have been on 100mg since Dec. 2019.

MIRAPEX: Regarding the Mirapex: I started it about Feb 2019 at a dosage where I am now. I went up to double that (in Oct 2019) and recently went back down to my current dosage-.25mg (within the last week or so). I do not believe the augmentation of Mirapex is causing the issue. This pattern of having symptoms, starting a new med (and getting more sleep), and then having a return of symptoms within several months has been a constant throughout this ordeal. I do wonder about the iron infusions, though. I take an oral iron pill (SlowFE) every other day. I have noticed other meds (Meloxicam--which I take for bad knees) to cause me issues after I take it a couple of days in a row. I have read that it and other drugs like ibuprofen deplete iron in the body. I think my Dr, though, has done iron studies (infusion studies). When he looked at my blood work, he said the iron 'was fine,' and he is an RLS specialist at one of the RLS Quality Centers. Maybe I will refresh his memory about iron and ask if this is an option.

OTHER MEDS: Clonazepam and Tramadol (regular) 100mg were added around ten months ago-Oct 2019. Then, about seven months ago, Tramadol ER was added....same scenario...symptom increase, need more meds. In August, he added taking more Tramadol (as needed after bedtime). January of this year added buprenorphine slowly titrating to this level over several months. Dipyramidol was added Aug 1, gradually increasing to the current level. I started taking three total this week. (It was added because I am greatly affected by glutamate--as when I eat a diet high in glutamate, I can expect issues. This drug helps with glutamate overload in the brain apparently.) I also took Oxycodone for all of 2020 on an 'as needed' basis.

ME & RLS: Normally (before RLS), I was always a lite sleeper. My wife says I have ADHD as I could pop up at 6 am and get started on something major, where she needed time to wake up before starting the day. I also have historically required less sleep than her. She needs eight solid hours. I can get by with 6 (but prefer at least 7 with these meds). Last night, for example, I only got 4. The previous night, I only got 2.5. 6.5 hours in two days is NOT enough or ok. My wife does not even sleep with me anymore for fear of moving and waking me. She videos me during sleep, and we document my sleep hours & quality (with a Fitbit). It matches what we see in the video. When I sit down to watch TV after dinner, I fall asleep within minutes at times…but, the movements do wake me. Sometimes, my legs feel 'electric' and I NEED to walk. Sometimes, I can sleep through the movements. The movements have worsened significantly for several years. I began having RLS symptoms about five years ago. We tried to handle it naturally for a while, but the movements have worsened. Initially, they were only in my legs (the electric feeling), and now they are sometimes involuntary. The movements are also currently in my arms, shoulders, and even face. I raise my arms a lot at night. I am on a CPAP as I have non-positional sleep apnea. I have also personally discovered (when falling asleep in the recliner) that I have sleep paralysis. This does not occur when using the CPAP.

Any advice is greatly appreciated! Oh, and the iron/ferritin levels mentioned in m original post were from Oct. 2019, fyi.

James7
Posts: 33
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

stjohnh wrote:
Tue Aug 25, 2020 1:26 pm
James,
Are you taking the dipyridamole for RLS? If so, was it suggested by your doc or some other way? It was effective in a very small demonstration trial but would be considered experimental by most docs. Does it help?

Your ferritin indicates your BLOOD iron is fine, however that is not the same as BRAIN iron. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
I am not sure dipyridamole is helpful for RLS per se (the movements), but I'm taking it because I am greatly affected by glutamate. I can eat something high in glutamate (chinese food) and immediately become anxious and later will have RLS symptoms terribly bad. It is experimental and I've just begun it in August. I have messaged my dr about doing iron infusions. It would be wonderful if that would help. I do see a RLS Specialist at one of the Quality Centers. Thank you for responding! Blessings to you as well!
Last edited by James7 on Tue Aug 25, 2020 6:25 pm, edited 1 time in total.

James7
Posts: 33
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

Rustsmith wrote:
Tue Aug 25, 2020 2:19 pm
Your combined meds are not that different than mine. Your use of buprenorphine is where I am hoping to go in about six months (I have to rotate opioids due to side effects from each). So I don't really have any suggestions beyond that you can try tweaking some of the doses to see what might help.

As for the psychologist for stress, I am starting down that road later this week. My issue isn't stress, it is depression. I am sure that the doc will try to say that there is a stress component, but my stress levels now are nothing like what I felt while I was working (senior engineering executive). I don't know what will come of it, but I have to give it a try since there aren't many other options open for me.
Rustsmith, thanks for responding! Buprenorphine has been great, but it is a bit scary at first. I had some weird effects getting accustomed to it. Currently, I think I need to go up in dosage, but my Dr. doesn't want to do that. Have you tried iron infusions? I hate this disease. I am a professional (still working...trying to work...I'm young at 52 years old.). I've worked with many engineers in a manufacturing setting. I'm a CPA. Did you retire early? I'm fearful this may be in my future. I only had 4 hours of sleep last night and 2.5 hours the night before. 6.5 hours in two days IS NOT ENOUGH to be doing the work I do.

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Need advice

Post by Rustsmith »

James, I haven't tried iron infusions because I am not a candidate for them. I took oral iron for several years and for some reason was able to elevate my ferritin level to over 600 that way. The high iron didn't help my RLS, but the data shows that around half of us don't benefit from increased iron. There is research going on right now that is looking at how iron is transported across the blood brain barrier and it is turning out to be much more complicated than even the researchers suspected. I stopped taking oral iron about four years ago and my latest ferritin test was 225, which is the lowest it has been since I stopped.

As for retirement, yes I retired early but it had nothing to do with my RLS. My wife also has a neurological condition and she pointed out that every year that I continued to work was a year less of her "retirement". We were able to travel for about 12 yrs because I left early, so she was right (as always). Plus, I was fortunate in that our finances were such that I didn't need to continue working.
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.

Polar Bear
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Location: N. Ireland

Re: Need advice

Post by Polar Bear »

It might be helpful to try and increase your ferritin. It could do with being higher. Also have you ever tried reducing your mirapex. With movement in your shoulders and arms it does sound like DA (mirapex) augmentation. How can you be sure that augmentation of Mirapex is not the issue? It is very common. And if augmented on Mirapex it is difficult for any other medications to fight the increased symptoms.
Holland has mentioned infusions, have you tried to increase your ferritin via oral iron.
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

James7
Posts: 33
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

Polar Bear wrote:
Tue Aug 25, 2020 10:20 pm
It might be helpful to try and increase your ferritin. It could do with being higher. Also have you ever tried reducing your mirapex. With movement in your shoulders and arms it does sound like DA (mirapex) augmentation. How can you be sure that augmentation of Mirapex is not the issue? It is very common. And if augmented on Mirapex it is difficult for any other medications to fight the increased symptoms.
Holland has mentioned infusions, have you tried to increase your ferritin via oral iron.
Thanks for your response. Yes, I take a dose of SlowFE every other day...my intestines can't take it daily. My Dr has said my iron and ferritin levels were fine...and he is an RLS specialist at a Quality Center. I did suggest iron infusions in a message to him today. I know he has done some studies on it himself and will probably laugh at my suggestion...but, I want to consider it.

I didn't realize the mirapex would CAUSE RlS in the arms. I thought I was just progresssing with the disease. My Dr also wants me to take a small dose of Mirapex and is keeping me at this level because this dosage works WITH buprenorphine to fight RLS. I could mention that maybe I'm augmenting.

Thank you!

Rustsmith
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Re: Need advice

Post by Rustsmith »

Early this year my doctor told me to stop taking the small dose of Mirapex (0.25mg) that I had been on for about five years. After about a week or so, I found that I needed to increase my methadone dose from 5 to 7.5mg/day to cover my RLS. But after a few more weeks, I found that 7.5mg of methadone was leaving me feeling drugged. So, I dropped back to 5mg and resumed the Mirapex at 0.125mg. I found that this combination works just fine. I don't feel drugged and I also am not experiencing any signs of augmentation. So when she started my switch from methadone to tramadol, she left me on the small dose of Mirapex.
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.

James7
Posts: 33
Joined: Fri May 10, 2019 8:06 pm

Re: Need advice

Post by James7 »

Rustsmith wrote:
Wed Aug 26, 2020 12:40 am
Early this year my doctor told me to stop taking the small dose of Mirapex (0.25mg) that I had been on for about five years. After about a week or so, I found that I needed to increase my methadone dose from 5 to 7.5mg/day to cover my RLS. But after a few more weeks, I found that 7.5mg of methadone was leaving me feeling drugged. So, I dropped back to 5mg and resumed the Mirapex at 0.125mg. I found that this combination works just fine. I don't feel drugged and I also am not experiencing any signs of augmentation. So when she started my switch from methadone to tramadol, she left me on the small dose of Mirapex.
That's an idea to consider. Thank you!

badnights
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Re: Need advice

Post by badnights »

I didn't realize the mirapex would CAUSE RlS in the arms. I thought I was just progresssing with the disease. My Dr also wants me to take a small dose of Mirapex and is keeping me at this level because this dosage works WITH buprenorphine to fight RLS
Your first line of defense is to educate yourself as much as possible about this disease. Even though you see a QCC specialist, he isn't perfect. If you have knowledge, you and he can form a team, and patient care is always better when the patient is part of the team.

Your ferritin level of 87 is lower than most RLS/WED specialists would like; you might want to ask him specifically about that again. Johns Hopkins hospital recommends ferritin above 100 on their website (see extract in my signature link - I can't find it on their website anymore). See also the 2018 consensus guidelines on treating WED/RLS with iron - also in my signature link. I got an iron infusion when my ferritin was 275. The specialists who do iron infusions for WED/RLS will all give an infusion to someone whose ferritin is under 100, and a second infusion to the same person if the first one helped if their ferritin is under 300. Some specialists will give a first infusion to a patient (like me) when the ferritin is anything up to 300.

Symptoms very rarely happen in the arms, torso, or face - - - UNLESS the person is augmenting. You are likely augmenting. There is also information on augmentation in my signature link. You have to learn about this, so that you can have intelligent conversations with your doctor and be able to give him information to think about. There has to be back and forth in your care. Caring for a patient with refractory WED/RLS is very complicated - nothing can be done by rote because response to treatment is so individualized.

Re the hot flashes, when do they happen? If they happen in mid to late afternoon, they may be mild opioid withdrawal symptoms as the previous night's meds wear off. The suboxone in buprenorphine has a pretty long half-life, plus I don't think your dose is high enough to cause withdrawal, but maybe you're a fast metabolizer and extra-sensitive. Dipyridamole can cause flushing and buprenorphine can cause excessive sweating; other than that, your meds don't seem to be known for that type of side effect.
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.

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