Pergolide

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.
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Rubyslipper
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Pergolide

Postby Rubyslipper » Sat May 29, 2004 2:29 pm

Has anyone heard about or tried this drug? What I've read about it sounds good but I'm not sure. According to what I read, it is in the family of Mirapex (which I now take) and has previously been used mainly to treat Parkinson's. There may be some bad side effects but they weren't covered much in the articles. Jumpy, this may be a good research question for you, if you would be so kind.

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Permax versus Mirapex

Postby jumpyowl » Sat May 29, 2004 6:23 pm

Well, Ruby! I will take up the challenge but it is not easy.

Permax is a dopamine agonist affecting the central (D2) dopamine receptors. It is an improvement over the dopamine precursor (carbidopa/levadopa) therapy. HOWEVER, IT IS A ERGOTAMINE DOPAMINE AGONIST as compared to MIRAPAX which is a nonergotamine dopamine agonist. This means that Permax is derived from ergot and is therefore believed to have more unpleasant side effects (nausea, nasal congestion) than nonergotamine derivatives. These can be treated with domperidone, however, the latter is not available in this country (other antinausea agents are bad for RLS).

About PERMAX (pergolide)

This medication is a dopamine agonist (acts like dopamine on the dopamine D1 and D2 receptors). Permax may work better than Sinemet for daytime RLS symptoms and for more severe RLS. Permax comes in 0.05 mg, 0.25 mg, and 1.0 mg.

Go slow with Permax to avoid side effects which include nasal stuffiness, hypotension (low blood pressure), nausea, headache, and lightheadedness. The problem with hypotension can be very bothersome if the dose is increased too quickly. Dyskinesia (involuntary movements) as with Sinemet, seem to occur mostly in Parkinson's disease patients, but not in RLS patients.

A minority of RLS patients on Permax may get tolerant of the drug and need higher doses. This tolerance problem is not generally as bad a with other drugs, such as the sedatives or narcotics, as most will still be controlled by the higher dose. There is little or no cross tolerance with the other dopamine agents (Mirapex or Requip), so a change can be made to another drug once tolerance to Permax becomes a problem.

Augmentation has been reported in some studies with Permax in about 10-22% of patients. The problem is not similar to the augmentation seen with Sinemet as giving more of the medication earlier in the day to treat the RLS symptoms work well, rather than worsening the problem as with Sinemet.

A new study published in the Mayo Clinic Proceedings (Mayo Clin Proc, 2002;77:1280-1286) has just revealed 3 cases of valvular heart disease from Permax. This is similar to what was seen in the past with the diet drug Phen Fen (from the fenfluramine part). Permax is an ergot-derived drug which is a class of drug that has been known to cause valvular heart disease. Although it is to early to know whether there is a significant concern for all patients taking this drug, patients on this drug should see their doctor and an echocardiogram (the best test to see if any valvular heart damage is occurring) should be considered.

In addition, there are several case reports of Pulmonary Fibrosis (scarring of the lungs) caused by Permax. The latest article is in Clinical Neuropharmacology, Vol 25, No. 5, pages 290-293. This problem with Pulmonary Fibrosis should also be considered when using Permax for long periods of time. (from Southern California web site)


As you observe from this quote patients usually consider graduating from Permax to Mirapex, and not the other way around. The warning about serious side effects (valvular heart disease and pulmonary fibrosis) is scary. As you perhaps recall, Nadia had this problem with Permax.

What do you hope to get from Permax that you are not getting from Mirapex? There is Requip (Ropinirole) which is similar to Mirapex, if you want a rest from Mirapex. They are both fairly new. Side effects are similar.

I do not want to scare you away from Permax. I just wondered why you consider switching from Mirapex to Permax?
Jumpy Owl

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Postby Rubyslipper » Sun May 30, 2004 1:09 am

I am not getting relief from the meds I'm on now. The doctor doesn't want to increase the Mirapex dose and it doesn't seem like the Neurontin increase is helping either. I had just seen news info about Pergolide that said it seemed to help RLS sufferers sleep better. My doctor said we could try it if I wanted. At this time I don't have the medicine so haven't tried it. I really am at a loss as to what to do. Using Neurontin in the am leaves me so dopey that I can't function and it's a low dose. I am suffering from bad leg cramps also so if I finally the legs to quit carrying on, cramps wake me up and I start all over again. Maybe this is just a figment of my over-active imagination but I can't type worth #!&%* anymore. I have never been a fast typist but at least an accurate one. Now I hit lots of wrong keys but even scarier is that I turn so many letters in words around. I have never done that, at least not more than 1-2 times in a letter. Now it takes me forever to type a letter because of going back to edit. This started before increasing the Neurontin, so I can't blame that. For the first time I am scared about what the future holds instead of just being annoyed. When I consider that for most of us, RLS will just get worse as we get older, I become very depressed. Any ideas, Jumpy? Thanks for your caring and research. You don't know how much it means to me.

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(((((((HUGS FOR RUBY))))))))

Postby becat » Sun May 30, 2004 2:54 pm

(((((((((HUGS FOR RUBY))))))))))
I know right where your at. This thought of being in this mist of this the rest of my LIFE. I sometimes wonder when my body will just give out? It's bound to take a toll on our systems. Never being able to repair during sleep is a scary thing. A sprain taking a month to heal? Please!
I have also gotten to the point, in the last month, that I will not drive. I canceled to appt. in the last month, in fear that I'd not have enough control to drive.
I think that the depression that comes with RLS (or maybe it just comes up alot in here) is natural progression. Is there someone out there that would not get depressed after no sleep for weeks, months, years?
You have those twitchcritters, I have pain, others can't stop moving. Some among us have all of those and more. This lifestyle leads to a black cloud. And when the docs. tell me "well, your depressed and this is why this and this are going on"..........DUH, but it's a normal reaction to living like this day in and day out. I won't take antidepressents (sp?), have been offered them plenty of times.
Please don't loose hope my friend, we can all chat until the cows.....go back out to the pasture again. We can all buy new carpet when we've worn ours out pacing. We're in this for the long haul. We're a growing bunch in here. Maybe we can make a difference happen.
Wish I were there just to give you a hug. I'm with you, as you know, we'll be here for you. AND by the way, we need you here too!
Hang in there kiddo.

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Privately, if you want to

Postby jumpyowl » Sun May 30, 2004 10:36 pm

Ruby, please give me your medications and doses at present, and also anything else you tried before and with what results? Privately, if you want to. Also side effects you suffered. I need the facts. I know I am giving you more to do which must be hard! :cry:

Perhaps I can come up with something that might work better for you. At least let us take a look at what you have tried and have not tried. Also, it is important at what dose your doctor stopped your Mirapex? Is your doctor's lack of flexibility a problem?

There are several ways to approach treatment, this is why I call this disorder, the "disease of thousand handles" as opposed to lupus, which is a "disease of thousand faces."

Also what is your major morbidity? The problem you would want to change the most if you could?
Last edited by jumpyowl on Tue Jun 01, 2004 2:22 am, edited 1 time in total.
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Postby Rubyslipper » Mon May 31, 2004 11:47 pm

If I never get another thing from this website, I have received the love, support and guidance of new friends. THANK YOU ALL!!! Maybe someday we will all be able to meet for a giant group hug :wink: Wouldn't that be wonderful!!! Anyway, Jumpy, my doctor is quite flexible but she is also very new to me. She really seems to want to find help for this RLS thing. Right now I am on 300 mg of Neurontin 2 x day, 1.0 mg of Mirapex at night, .625 mg of premarin (that hormone thing!) and have started taking a B complex and 2500 mcg of B12 (about two weeks ago). Mostly what I want is the same as most of us; a good night's sleep without feeling like I am in a fog for half of the next day. At first I was on Amitriptylin and .5 mg of Mirapex. Then we changed from Amitriptylin to Wellbutrin. I weaned myself off of the Wellbutrin about three months ago. these are the only things we have tried. Part of this is because I have been to five doctors who want to try things other than medication changes. I have two sleep studies where I did not sleep hardly at all. No one's fault, just couldn't do it. But from the first study they found that my oxygen levels fell to below 86% (very low). So at the second one, when my levels dropped again they were going to try me on oxygen to see if that helped (my legs never did kick in). But I didn't sleep at all on that one so the brilliant doctor decided that I just needed to lose weight and all my problems would go away. That was the last time I saw him. As for side effects, I haven't seen any except that they lose their effectiveness. My doctor wants to try higher doses of Neurontin instead of increasing the Mirapex. I still haven't started the Pergolide, don't even have it yet. I have cut out caffeine and alcohol, VERY seldom have chocolate and have been trying to lose weight (just in case :( ) This has been a long week-end for me and yesterday and today have been better. I know stress plays a big part in RLS symptoms, guess this sort of proves it. Jumpy thanks for helping me out , I trust your take on this.

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More ((((((HUGS)))))) for Ruby

Postby sardsy75 » Tue Jun 01, 2004 11:21 pm

Hey there Ruby

Sorry to be out of touch for so long. I can really feel that you are going through a very rough time and in addition to Becat's am sending lots of ((((((HUGS)))))) your way, as well as lots of positive thoughts!

I have read back through your thread and also wondered why your doc was switching you from one family of drugs to another, but then realised, that's what they did to me once, and it did actually work; even if it meant going from 24/7 extreme symptoms to 24/7 mild symptoms, you gotta admit that ANYTHING is better than Extreme :wink:

Sorry Jumpy, small correction for you, my main drug up until just over a month ago was Cabaser (Cabergoline), or Dostinex as its known in the States, at up to 5mg per day, not Permax. My side effects were a complete loss of appetite (and in the process have shed 28kgs), occasional nausea, and an annoying dry, unproductive cough, which appeared about 3 months into my treatment.

However, I have a friend in Sydney who has used Permax, and found it an excellent treatment for his chronic RLS, however, he copped the nasal congestion side effect and as a result, often has "drug holidays" and switches between Permax and Sinemet.

Don't be scared to use the Permax!!! :shock: You may find that its exactly what you need as a "drug holiday" drug and might only need to use it for a few weeks at a time before switching back to the Mirapex. The lung problems linked to both Permax and Dostinex usually come into play if they are taken for Looooong periods and in high dosages....as it was in my case. For Dostinex, 1mg is the lowest dosage and 8mg the absolute highest, and I was on 5mg for 9 months straight, hence the cough! However, You may find that you only need to be on the lowest dosage.

Ruby, you mentioned that you are getting bad leg cramps. Are you getting enough salt and/or magnesium? And are your electrolyte levels ok? I know that a lot of people claim that cutting salt completely out of your diet can "cure" RLS, BUT, your body still needs it!! I've known my hubby (and my dad, come to think it) to wake up literally screaming at night with major leg cramps, purely because he's expended a lot of energy and sweat during the day, and although he rehydrated with water, he had not replaced the sodium (salt) he had sweated out as well. This is why pretty much all of the Sports Drinks have sodium in them and taste mildly "salty".

When was your last complete blood work up? If it was more than a couple of months ago, and you've gone so far downhill, it might be a good idea to get one done and check your Ferritin, Iron, Magnesium, Electrolytes, Imuno Levels, basically check everything, to see if anything "sticks out like a sore thumb" :?:

What most of us are missing out on is much needed REM sleep, which is when the muscles have a chance to unwind and do their repair work. So, i'm wondering if you also might consider going back on to a VERY LOW dose of either amitriptylin or wellbutrin. NO, i'm not saying you're depressed!! However I can clearly "hear" that you are completely worn out and utterly frustrated with this thing :? If these drugs were actually helping you to sleep while you were using them, then another round may not hurt, just to while you get yourself (and your brain :roll: ) back under some sort of control. Anti-d's, as much as they're being described as overprescribed lately, when used in very low doses, can improve your sleep. For example, I have just been prescribed amitriptylin and the aim is to "reset my internal sleep clock". My dosage started at 10mg and has just increased to 20mg. If I was depressed, and my new Neuro said straight to my face "you are FAR from depressed, just fiercely frustrated", I would have been put on a dosage up around the 300mg mark. This may be something you need to talk to your doc about, as sleep is as vital as the air we breathe :!:

I felt like throwing a party when I found out that I didn't have to take Neurontin any more :wink: I only got to the 600mg mark as well and felt like my whole body was under someone else's control. Your doc should be wise enough NOT to increase a drug which is having unwanted adverse effects which are concerning the patient.

Well, I've rambled....again. Bad habit huh?! However, I hope I have managed to provide at least one piece of useful information for you. You know that I'm always here for you girl.

Try to stay positive, get those stress levels down, and take it one day at a time!

Take care of yourself!
(((((((HUGS)))))))))
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Ooops!

Postby jumpyowl » Wed Jun 02, 2004 12:26 am

Well. before I can continue my dissertation to Ruby I have to eat humble pie. :(

Nadia wrote:

Sorry Jumpy, small correction for you, my main drug up until just over a month ago was Cabaser (Cabergoline), or Dostinex as its known in the States, at up to 5mg per day, not Permax. My side effects were a complete loss of appetite (and in the process have shed 28kgs), occasional nausea, and an annoying dry, unproductive cough, which appeared about 3 months into my treatment.



Well, I guess I did make a mistake as I was working from memory (a dangerous thing for me). However, I still think I did not make such a big mistake as Dostinex (cabergoline) is not that different from Permax. The important thing is that they are both ergot derived dopamine antagonists! And it is known that these cause more complications and side effects than the nonergot derived dopamine agonists. So I still stand by my point that why go backwards while other possibilities remain unexplored?

I agree Nadia almost everything you wrote. :) Yes, I am sure as a holiday Permax would be OK. But I thought that possibly Ruby needs more than a holiday, she needs something which will work for her. Yes, she should not be afraid to experiment but should go into it with both eyes open.

Side effects are also important to consider and the main therapetic effect has to be considerable to make worth of taking the chance. The cough (lung problems) do come after heavy doses and long period of use (they definitely come after Permax, but I guess you got them after Dostinex, huh?, Sorry! :oops: )

Still, if we are up to experimenting, let us chose as logically as we can, since the number of possibilities is enormous.

I will still make suggestions to Ruby (I am working on it) but that does not mean I am ignoring Nadia's suggestions. On the contrary! This is why this group is so effective because we can draw on different experiences and offer different point of views. 8)

Nadia, I am really interested how you symptoms are now that you had a chance to increase the dose of Elavil. Please let me know whether privately or publicly. If it does work, you may not have a typical RLS :wink: .
Jumpy Owl

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Postby Rubyslipper » Tue Jun 15, 2004 2:10 am

Well, against most people's better judgement, I did try Pergolide. I have an on again, off again heart thing where it goes into overdrive. All the tests have shown no major problems. Maybe it was a coincidence, but my heart started doing jumping jacks after two days on Pergolide so I quit taking it. I was only on it about 1 week total and that's not enough time to see if it was really working, but it didn't seem to be doing any good. Right now I am just on Mirapex and Neurontin and I'm seriously thinking about stopping the Neurontin. I have started taking B12 and a B complex which seems to be helping my energy levels. At this point, I don't know what to do. Jumpy, I could use your advice. Thanks to you all for your support and cyber-hugs!! Sleep well.

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Hello, there!

Postby jumpyowl » Tue Jun 15, 2004 2:46 pm

Hi, Ruby:

I do not feel qualified to give advice but I have some opinions, gut feelings which I will be happy to share. Actually I had this gut feeling early on about your medication Ruby. To quote from one of my early post:

(It seems to me that there are some primary attacks on RLS medicationwise, to apply it to your case):

1. (nonergotamine) Dopamine Agonist: You are taking Mirapex

2. Opioids/benzodiazepines/nonbenzodiaz. sleeping draughts: skipped

3. anticonvulsants: Neurontin

As you and your doctor have already guessed the antidepressant Wellbutrin is apparently not doing much good for RLS

It is revealing and quite believable that attacks have to be preceeded by the medication to be effective in preventing them.


Now a month or two later I would change this into the following:

There are four primary approaches in medicating RLS:

1. Sedative/hypnotic medications benxodiazepines and non benzodiazepines you are not on any of these

2. Dopamine agonists you are on Mirapex

3. Anticonvulsives you are on Neurontine

4. Analgesics (opioids) you are not on any of these

You have tried with not much success #2 and #3. You may have tried #1, in any case those are for milder cases. What you have not tried and what should be tried in my opinion is #4.

We have both seen many cases when the anti-Parkinsons and antiepileptic medication not only did not help but actually made things worse. And these were the very people who eventually received help from opioids.

The easiest to obtain is Hydrocodone but what is often used is Ultram. They also help me. Often in combination with something from the group #1. Klonopin is often mentioned but that may not be good for you because it has a long half life extending into the enxt day. Flurazepam or Lorazepam I found helpful. (My wife likes Lorazepam but does not like Flurazepam.)

I hesitate to go too strong on this because I need more experience on my own. :?

For myself, I would like to try #2, especially since anticonvulsants do not help consistently. The trouble with #2 and #3 is of course that they were developed for different neurogenic diseases. They are powerful drugs and RLS is clearly an off-label use (suggested on the basis of trial and error).

I digress but now I admit it that I had my concerns about Elavil for Nadia. There is a problem but not from the corner I was expecting it. The problem came only as a side effect and not as insufficiency which I was originally worried about. So I cannot take credit for being right. :(

Wish you all well! Cyberhugs when needed!!!! :wink:
Jumpy Owl

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Postby Rubyslipper » Wed Jun 16, 2004 1:21 am

Jumpy, thanks for the information. For the past three nights I have slept pretty well. So for now, I will stay on my regimen. But I will definately check with my doctor on the opioid family of meds. I am glad you also told me what your wife prefers and what helped or didn't help you. It always helps when discussing it with the docs. I truly hate to be a whiney person but here goes. In my previous e-mail I told you that my heart was acting up. This isn't the first time and it isn't anything really serious. But the doctor puts me on Toprol, a beta-blocker. That isn't a good thing for RLS sufferers. So we are going to try it and if need be switch to something else. Seems like all I do lately is cry the blues. Sorry, but thanks to all who have been there for me. My new lady buddies, Nadia and Becat, thanks for the hugs. Jumpy, thanks for the time you spend getting me info. Love you all :D

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Cry the blues?

Postby jumpyowl » Wed Jun 16, 2004 5:04 am

Ruby your input is just as important as anything else here. Those are the mosaics used to put together a picture which will hopefully make sense to everyone.

Let me borrow a post from the rlssupportgroup on yahoo which pertains to your situation, me thinks:

Yes, I took Dr. McBurney's advice and took a drug holiday from Mirapex by taking 10/500 hydrocodone (sic) - one each night for about 10 days. The hydrocodone worked fairly well at getting me through it, and the Mirapex worked better after the holiday. It is Dr. McBurney's belief that it's better to substitute a different type drug during a holiday, rather than a different drug of the same type (in other words, better to use hydrocodone to replace mirapex for a week or so, instead of requip or permax.) (or, in your case, pergolide - jumpy).

Now, due to very painful peripheral neuropathy in my feet, I often take
hydrocodone (7.5 instead of 10) at night along with my Mirapex, and those are the nights that I get the best sleep. The combination works very well for me. (this part is not so relevant to you, just left it there for completeness' sake - jumpy)

Vera (F/70), hope this helps.

Charlene


"it's better to substitute a different type drug during a holiday, rather than a different drug of the same type" (emphasis mine - jumpy)

Just thought I post it. :oops: I am glad you have slept well. This idea is an ammunition for the "bad" days.
Jumpy Owl

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Learning more and more each day

Postby jan3213 » Sat Jul 17, 2004 5:38 am

This is Jan

I read and re-read these posts every day. Just found this thread and I can't tell you how much I'm learning and how much you all know. I'm on 1 mg. of Mirapex 2x daily and 2 mg. Clonazepam 1x daily and have been for approx 1 year (this time) and have had no side effects (my neuro increased my meds about a year ago). But, I've learned so much from reading all your posts. I've had this awful thing for so long, but I really don't know anyone else personally who has it. Now I feel like I do and it is really going to help me so much!!! It already has. I really can't read enough. Every now and then I get brave enough to tell someone an experience I have had, but other than that, I mostly read and learn. Thanks so much Jumpy, Nadia, Becat and Ruby! You have all helped me more than you know! The next time my legs go crazy (and they WILL), and I want to SCREAM AT THE TOP OF MY LUNGS, I'll think of you guys and know that there are people out there who know what I'm going through and who I can actually talk to and they won't look at me like I'm nuts!
Thank you, thank you, thank you!!!

Jan

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Serendipity or what?

Postby jumpyowl » Sat Jul 17, 2004 11:56 am

Hello, Jan:

You are such a wonderful, warm and loving person. A person one seldom bumps people like you into in the outside world. I think more of them can be found in this segment of the mysterious cyber space, :) perhaps because we are also sufferers :? and yet want to share!

You just helped me tremendously by reminding me of the following quote:

"it's better to substitute a different type drug during a holiday, rather than a different drug of the same type" (emphasis mine - jumpy)


Your timing is perfect. That is why I call it serendipity. I just finished reading Nadia's long reply to you, Sole, and myself. In the last one, Nadia quotes me:

#2 You have to go off Endep gradually. This should be the final resort. I am not a great believer of stopping suddenly unless continuing with something similar (like a drug holiday).

Let me know what you decide. These are occasional uses BTW. Just when you have the bad cycle. You can stop the supplement any time, since you are using it for only a few days.


Well, that appears in seeming contradiction what I advised Ruby via Vera (cf first quotation). But these are two different situations: Here Nadia is not taking a holiday from Elavil, which is her major drug. She is trying to supplement it with another drug the major use of which is for a different affliction (called secondary by her doctor).

Still I think "like a drug holiday" is misleading, especially when it refers to RLS. RLS/PLMD is a strange disorder that has no approved treatment of its own, but drugs belonging to four major classifications are able to diminish the symptoms (all off label use). This makes it easy to do holidays! { I am not sure about the sudden stopping of drug #1 (which no longer works due to augmentation or some other reason) in these holidays...}

Well, my advice to Nadia still stands with the acknowledgement that the holiday analogy limps a little! :oops:

Sorry for diverging a bit. I just wanted to give you credit, Jan. I will post this and more in Nadia's thread.

A good, restful night to you and the rest of the "gang" of ORP. :D
Jumpy Owl

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A Great Day!

Postby jan3213 » Sun Jul 18, 2004 4:45 am

Jumpy

I had a Great Day! I got almost 5 hours sleep, my legs didn't hurt too bad this morning, the sun was shining, it was below 99 degrees farenheidt outside (humidity included--I do live in southern Illinois where the humidity and temperature are often the same), and the first thing I saw on my computer was a post from you about me ( of all things! ). It was so sweet of you to say those things to me, but (and I swear I'm not trying to be "humble"), I meant every single word. What a wonderful day! What a wonderful group of people I've found! I hope everyone else had a great day, too. Or at least a BETTER day! And, I'm always up for any advice on what foods might trigger attacks. I know it depends on the individual, but I think too much sugar has an effect on me, but there may be certain foods that might HELP RLS that I don't know about. You guys are so knowledgable about all sorts of things. Maybe I'm lazy, or maybe it's because I don't have anyone to bounce things off of because, as I said, I don't know anyone with RLS (until now). I feel like a sponge. I'm probably doing this all wrong. I should probably start a new topic. Right Jumpy? Just "jump" on me if I'm doing it wrong, okay? Anyway, Once again, thanks so much Jumpy. I wish I could meet you in person. I like to picture people in my mind and, maybe because I've "talked" to you and Nadia more than the others, I kind of have a "mind picture" of both of you. Isn't that funny? I'm rambling! Guess I'm getting old!

Gotta go! Love you guys!!!

Jan


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