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    Old 06-04-2016, 03:23 AM   #1
    ddill
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    Frustrated with RLS

    First let me say that I am a 65 year old woman who has had RLS for (I'm guessing) 35-40 years. I've tried most every drug to control the urges which have gotten progressively worse over the years. The most recent drug of choice is Mirapex .5 mg which I take 2 in the am and 3 in the pm. I started taking Mirapex many years ago (at a lower dosage) and it worked the best although it did have the side effect of making me sleepy and driving was difficult. Of late I no longer have the sleeepy effect and feel the Mirapex may not be working as well as it used to.

    As I write this I am frustrated because I woke up at 4 am with my legs jerking. Basically RLS for most people is a night time issued however mine has become an almost 24 hour/day problem.

    My neurologist is willing to change my meds but I'm afraid that going off the Mirapex is going to result in trying other meds that may not be effective and therefore having to put up with the RLS until something (anything) is found that can relieve the jerking and pain.

    I read an article in the Neurologist Today magazine about a clinic at Johns Hopkins that specializes in RLS and although I live in upstate NY and travel to Johns Hopkins would be difficult, I am considering trying it.

    Does anyone else have RLS this severe? Is anyone familiar with the Johns Hopkins center?

     
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    Old 06-06-2016, 11:47 PM   #2
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    Re: Frustrated with RLS

    Hi Ddill, I think we have spoken before? The DAs are notorious for making nighttime RLS continue on into the day. The DAs squeeze more dopamine out of RLSers pathetic dopamine receptors and make them even more pathetic in the process. We with RLS have "anemic brains." It is this anemia of the brain that probably leads to our dopamine receptors. Our receptors need a somewhat constant supply of iron to keep humming along. At least that is what scientists have seen in our brains - no iron reserve in a part of the brain called the substania nigra and small and few dopamine receptors therein as well. The receptors suck up dopamine in our brains (and supposedly we with RLS have plenty of dopamine) and hurl that dopamine down our spines (aka the central nervous system) where it makes it way to our arms and legs (called the peripheral nervous system) and quiets them.

    During the day there is a good amount of free unbound iron in our bloodstream and our pathetic dopamine receptors manage to hum along. But our serum iron levels drop at night. Everyone's does. But the non-RLS world can make a withdrawal from their brain iron reserves and their dopamine receptors keep humming along at night. We lack that reserve, supposedly. But there's a point of no return - if you take DAs which downregulate your already downregulated receptors then you will get daytime symptoms as well. They all pooped out.

    First thing to do is look at any medicines you might be taking that make RLS worse such as certain antacids, anti-depressants, antihistamines, calcium channel blockers, melatonin, metformin, statins, HRT even certain sugar substitutes.

    My RLS is mild and intermittent but was the devil incarnate in my early 40s when I decided it was a good idea to take melatonin. It took me three years to figure it out. Anyways, after not sleeping for a couple of nights because the RLS was so bad I read on the internet to "just take iron at night." I bought a kind of iron that is gentle on the stomach in the form of iron bisglycinate (called Gentle Iron). It worked that first night and every night as long as I took it on an empty stomach an hour before bed and away from all other supplements and drugs. One night I ran out and went to the drug store and bought some ordinary iron called ferrous sulfate because the health food store was closed. I figured I'd rather risk an upset stomach than lose a night's sleep. I totally expected it to work but an hour later, nothing. I took a second pill and eventually fell asleep. Anyways the day I stopped the melatonin is the day my RLS went quiet and I stopped the nightly iron. Eventually I realized that iron bis-glycinate is probably the only iron that is able to readily cross the blood brain barrier and that is why it works so well...for one night only. Not a cure, just the best darn treatment out there.

    Anyways, several people have taken my advice and gotten relief. Some take one iron tablet wake up 4 hours later and have to take another. And some get no relief at all. In one case, the person was on therapeutic doses and of anti-depressants that I believe negated the iron. Oddly enough, you can be on DAs and the iron will work but not anti-depressants. As long as I was taking 1mg of melatonin I only need one iron tablet. When I stupidly raised the melatonin to 3mg I had to take two 25 mg capsules of the iron bis-glycinate. If I was taking 5mg or 10mg than I doubt any amount of iron would work. I think that is what is happening to people on the anti-depressants. Another man who it did not work for had Lymes Disease. Our bodies will not allow iron in from the GI tract in the face of a raging infection. Bacteria love and need iron so by clamping down on iron our bodies are trying to starve the critters out. Someone with Lymes Disease and severe RLS may do better with iron infusions. Johns Hopkins has an on-going clinical trial with iron infusions and RLS. I would not do it. My iron stores are up over 100 and I don't want them higher. Some people swear by infusions followed by daily iron. Good luck.

     
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    Old 06-07-2016, 04:16 AM   #3
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    Re: Frustrated with RLS

    Thank you for all your advice. Some it may indeed apply.

    Yes, I take iron (ferrous sulfate) at night. I've never thought to try a different form of iron. I've always been anemic so I've taken the iron w/o thinking there may be another form. I will definitely head to the health food store and look for some gentle iron.

    I'm sure some of my other meds play a factor. I've been taking prozac for many years after a serious bout of depression. It is only recently that I was put on lipitor and I hadn't thought that the Lipitor may have an affect. I'll decrease my dosage and discuss w/my doctor.

    My other meds that may be playing a factor are gabapentin (prescribed by my neurologist for both pain and to help sleep. I didn't think a neurologist treating rls would prescribe something that would have a negative effect onthe rls.

    I also take high dosages of tylenol (2000 mg/day) as an anti inflamatory for my arthritis, Over the years I've tried several other drugs for arthritis w/o much luck.

    What about pramipexole that I take for essential tremor? Would you think that too may be affecting the Mirapex?

    Is it possible that my many other drugs (besides Mirapex) are counter productive and need to be reviewed?
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    Old 06-07-2016, 09:49 AM   #4
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    Re: Frustrated with RLS

    Prozac is a good drug I truly believe - just not for RLS. Wellbutrin is supposed to be the RLS friendly one. Trazodone too is supposed to be RLS but doctors won't prescribe therapeutic doses for depression. Tylenol I have never heard about in terms of RLS and if you need pain relief then what are you going to do? Gabapentin is supposed to be good for RLS.

    Yes, definitely try the Gentle Iron on an EMPTY stomach one hour before bed away from all other things. Since you are anemic maybe take two tablets if one does not help and ask your doctor if it is ok to take two. I'm not sure if one will work along with the Prozac but two might. Do not take any iron during the day. I recently read an article that daily or actually three times a day dosing with iron (in terms of anemia) may not be best. Clinical trials have shown that when we take iron our bodies release a substance called hepcidin that clamps down on our bodies ability to absorb iron from the GI tract. It is still present 24 hours later. So scientists are thinking that an every other day dose may be more helpful in term of anemia. Anyways, only iron at night for RLS...that's when our brains need it. Tapering off of the DAs will allow your receptors to return to baseline and that will help a lot too. Prozac, Lipitor, while aggravating your RLS are NOT down-regulating your receptors so no worries there. Let me know how it goes!!!!

     
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    Old 06-09-2016, 12:31 AM   #5
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    Re: Frustrated with RLS

    You are very welcome. Don't be a stranger!!!

     
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    Old 06-09-2016, 04:05 AM   #6
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    Re: Frustrated with RLS

    Went to health food store yesterday. Got iron that says: gentle and non-constipating, ferrochel iron bisglycinate. He said it was definitely not ferrous sulfate. Is that what you recommended?

    You mentioned that lipitor should not be a problem however I've reduced the amount I take anyway and will ask the doctor for blood test to see if I really need it.

    Thanks for your comments. Let's see if this iron helps at all.
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    Old 06-09-2016, 08:02 AM   #7
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    Re: Frustrated with RLS

    Statins and Prozac do seem to bother people's RLS. Fingers crossed for the iron.

     
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    Old 06-09-2016, 02:47 PM   #8
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    Re: Frustrated with RLS

    I'm not about to quit the prozac. I went to my pain mgmt doc this am and we decided he will do injections to my spine and burn nerves. Prior to the procedure I need a physical so at that time I will ask for blood work to see if I need to continue on the Lipitor.
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    Old 06-09-2016, 03:57 PM   #9
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    Re: Frustrated with RLS

    Quote:
    Originally Posted by ddill View Post
    I'm not about to quit the prozac. I went to my pain mgmt doc this am and we decided he will do injections to my spine and burn nerves. Prior to the procedure I need a physical so at that time I will ask for blood work to see if I need to continue on the Lipitor.
    Sounds like a very wise plan!!!!

     
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    Old 06-22-2016, 12:51 PM   #10
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    Re: Frustrated with RLS

    Hi Ddill, how are you feeling these days?

     
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    Old 06-22-2016, 06:51 PM   #11
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    Re: Frustrated with RLS

    I went to my rheumotologist last week and explained to her about my leg pains. She suggested increasing the tramadol to 3x, rather than 2x and also gave me script for a steroid that she thought would help the arthritis and then also help the leg pain. That does seem to be helping as my leg pain is less and I have not increased the mirapex for the RLS. I have also switched to the gentle iron. She also took blood for several blood tests (8 vials worth). I should find out those results later this week.

    So, yes, I think I am doing better than I was when I started this thread. However, I await my rhizotomy procedure to my back which may also help my issues.

    Thanks for keeping in touch.
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    Old 06-22-2016, 08:46 PM   #12
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    Re: Frustrated with RLS

    I hope that people on here note how we have to be our own advocates and keep searching for answers. Your story is inspirational Xx

     
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    Old 06-23-2016, 05:39 AM   #13
    ddill
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    Re: Frustrated with RLS

    I don't know how well publicized this web site is but it has definitely been good for me on several accounts. btw the script that I was given by the rheumo is MethylPREDNisoline. I've noticed an improvement each day.
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    Old 06-23-2016, 09:24 PM   #14
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    Re: Frustrated with RLS

    The steroids are for pain and inflammation...right? Not the RLS??? So your pain is better but it sounds like your RLS is better too? Is it completely gone at night such that you can sleep thru or just not so bad and you're sleeping a little more? Either way, what do you think is helping the RLS - the extra tramadol, iron, etc? Sorry for all of the questions.

     
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    Old 06-24-2016, 03:13 PM   #15
    ddill
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    Re: Frustrated with RLS

    Yes, the steroids are for the arthritis and they do help. But the RLS remains about the same. I think the gabapentin has me sleeping better than I was despite my leg pain.
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