A newbie here, so I'm just kickin' this out there.

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.
reklawr2005
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Location: N.S., CANADA
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A newbie here, so I'm just kickin' this out there.

Postby reklawr2005 » Mon Sep 11, 2006 11:44 pm

My wife suffers from RLS as I have it.
I just turned fifty and my doctor discovered, from the last blood work he ordered for me, that I have very low B12. High Colesterol and all that.
I have been taking 'off the rack' B12 tablets 1000 mcg daily for the last six weeks and I have noticed a marked improvement in my RLS.
Happily sleeping in the same bed again.
'Contented in Nova Scotia'

icrochetafghans
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Joined: Thu Sep 07, 2006 4:02 am
Location: Texas

Postby icrochetafghans » Tue Sep 12, 2006 3:37 am

I take a daily multivitamin with high dose vit B complex. It keeps my symptoms under control.
Diane

Aggie Mom

ViewsAskew
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Postby ViewsAskew » Tue Sep 12, 2006 5:10 am

Low B12 is a cause of RLS - if anyone has that tested and is low, taking it or getting injections may completely resolve your RLS.

Also, if you have low B12, it might be worth finding the cause. I have no clue how many causes there are, but do know that besides being a vegetarian/vegan, celiac disease is a common cause. It also causes RLS. So, if you are anemic, low in B12, or have any other strange unexplainable symptoms, please look into being tested for celiac. It is NOT required to lose weight or have gastro symptoms, contrary to what many doctors think. If you do a little research, you may only read the "common" symptoms (which are now not thought to be so common) and miss the symptoms you have. Average time to diagnosis is over 8 years - that's how easy it is to mistake for other things.
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.

BeanieLee
Posts: 103
Joined: Tue Sep 12, 2006 7:05 pm
Location: Chicago

Postby BeanieLee » Tue Sep 12, 2006 7:26 pm

I have just begun taking Lyrica, hydrocodone, and a multi-vitamin with 100% daily value of b12, magnesium, Iron and Folate and all of these things have barely brought relief. The only thing that distinctly helps is the narcotic. The dosage is low though so it helps great for about an hour and then it's gone. Amen to anyone who gets relief from a vitamin or other med.

FidgetBoy
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Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Postby FidgetBoy » Tue Sep 12, 2006 11:04 pm

Beanie- A lot of people on this board are probably sick of my posts about the wonders of long-acting narcotics but if you find that vicoden isn't lasting long enough (which is exactly what I experienced), taking a longer acting narcotic like oxycontin, ms contin or methadone may do the trick. Like you, I found the short acting narcotics a godsend for the first few hours and then I was back at square one again.
Josh

ViewsAskew
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Postby ViewsAskew » Wed Sep 13, 2006 12:15 am

Ditto 8)
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.

BeanieLee
Posts: 103
Joined: Tue Sep 12, 2006 7:05 pm
Location: Chicago

Postby BeanieLee » Wed Sep 13, 2006 6:13 pm

Fidget, I agree with you. I took oxycontin a long time ago for a foot problem and at the time, while my legs weren't real painful like they are now, it brought total relief to all the foot/leg discomfort I was having. The problem is finding a doctor who will prescribe it and it seems like asking for the drug specifically is like painting drug addict on your forehead. The short term meds simply are just that - short term. Lots of people have sporadic, short-term symptoms and those meds are wonderful for those poeple. Unfortunately mine are bad in the evening, horrible in the early morning and are now lasting longer into the day and are accompanied by pain. I just recently brought rls up to my podiatrist, as he's the only dr. I have a relationship with and I ended up in tears while talking to him about the whole thing because I had all this guilt associated with needing narcotics. The simple fact is that nothing else brings even a tenth of the relief that the narcotics do for both the pain and the tingly discomfort. I also don't understand why it's perfectly acceptable to depend on long term drugs that make us fuzzy, groggy, sick and tired but it's strongly discouraged that we become dependent on narcotics that have barely any side effects at all and don't change our chemicals or neuropathy. I say what works - works. I'll pray that I can find a dr. who will listen and learn enough to feel comfy prescribing me a long term narcotic, until then I'm stuck with vicodin (don't get me wrong i'm very grateful to at least have that) that only lasts an hour or so and contains acet. that's bad for my liver. I'm staying optimistic about it though :) just keep pluggin' away...

FidgetBoy
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Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Postby FidgetBoy » Wed Sep 13, 2006 8:56 pm

Beanie- The way I got my doctor to write for oxycontin is I basically tried every other drug first... it sounds like you've tried lyrica, have you tried requip or mirapex yet? According to the Mayo guidelines for RLS, if you fail mirapex, requip and antiepileptics like lyrica, you get to be put on narcotics, period. My doctor had a hard time withholding oxycontin when I put 4 bottles of useless drug in front of him... there was basically nothing else left to use!
Josh

BeanieLee
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Location: Chicago

Postby BeanieLee » Thu Sep 14, 2006 6:31 pm

Fidget, I have not tried Requip or any of the dopamine drugs yet. My deal is that I'm currently between jobs and uninsured. the Lyrica was a free sample. I went to the pharmacy and had them print out pricing for a months supply of both Lyrica and Requip and they were both very near $150. So the price is a huge factor for me in experimenting until I find something efficient. Another big factor is ins. coverage. I've been uninsured for a few months now and I fear that if I get officially diagnosed with RLS by a doctor and I'm prescribed Requip then it will be considered a pre-existing condition when I apply for insurance benefits. Insurance companies hawk for stuff like that and they can either refuse to pay any of the related costs for a period of time or they can decide to pay a lower percentage of the related costs altogether. If I didn't have a lapse in my coverage this wouldn't be an issue but they can get me on it now. That infuriates me. I've actually been taking Lortab for a while for foot pain and as the RLS developed it's been the only thing that helped. I was in the same boat before the lortab too - trying every drug out there for the foot pain before resorting to the narcotic. So I know how that goes. It sucks that I may have to do that all over again. It would be fantastic if something else worked better though! My dr. said he'd also do what he could to get samples of Requip or Lyrica in the meantime. However he says that I do need to consult with a regular physician (he's a specialist of another kind) and get diagnosed and pursue treatment becase I'm obviously miserable. So my predicament is - Do i pursue treatment now and risk paying a lot more for this disorder in the long run or do I wait and bide my time with lortab until I have full benefits in place and then go get diagnosed? It's tough ya know? I barely have enough money to pay for office visits and Rx's right now without insurance as it is. don't get me wrong I'm very grateful for insurance companies but it feels like flat out discrimination to hear that you're coverage will be denied because you happened to be diagnosed with a disease a month before you signed up with them. Ya either cover the condition or ya dont! The Lyrica wasn't the miracle drug I was praying for but it does help and the narcotic works wonders, but only for a very very short time. I'm hoping that I will have benefits soon, of course, but that in the meantime my doctor will flex with me just a little and at least give me a comparable narcotic without the acetamenophin so that I'm not ingesting tons of that when I don't need it. Or perhaps some other time released thing like the duragesic patch. We'll see. He's been wonderful to me but how much can I ask for ya know? Just have to go with the flow for now.

BeanieLee
Posts: 103
Joined: Tue Sep 12, 2006 7:05 pm
Location: Chicago

Postby BeanieLee » Fri Sep 15, 2006 8:06 pm

Well my dr. prescribed me Dilaudid. It's not sustaining release but I feel better about taking it than the hydrocodone since it has no acetimenophen in it. Anyone have any experience with dilaudid? What do you think of it? I got a very low dose. We'll see how it works along with the Lyrica. Is 2mg of Dilaudid that much more significant than 5 mg of hydrocodone? I guess I'll just have to see.

FidgetBoy
Posts: 317
Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Postby FidgetBoy » Fri Sep 15, 2006 8:36 pm

Beanie-
Cost is a BIG factor with the dopamine agonists and I absolutely agree with you that the financial aspects should be considered when choosing an agent. In fact, now that I think of it, the financial aspect should be included in the Mayo Algorithm! In my mind, if you can't afford the DAs, and there are no available samples, you should be able to go on narcotics...period. Since your MD wrote for Dilaudid, it sounds like s/he agreed? What dose of dilaudid did they write for? the conversion ratios between oral dilaudid:oral oxycodone:oral hydrocodone (vicoden)= 7.5 mg:20 mg:30 mg. (Dilaudid is the strongest of all 3) If you do a simple ratio, you can calculate the equivalence of one narcotic to the other. (for example, since vicoden is 1/4 as strong as dilaudid, you multiply 5mg x 0.25). Therefore, 5 mg of hydrocodone= around 1.25 mg of dilaudid.
Josh

BeanieLee
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Joined: Tue Sep 12, 2006 7:05 pm
Location: Chicago

Postby BeanieLee » Fri Sep 15, 2006 8:59 pm

well it's 2mg of dilaudid so if your conversion is right it doesn't sound like it will help much. i've been taking two 5mg hydrocodone together so this would actually be less than that. My main objective was trying something different to get off the hydrocodone for a few days because i've probably grown used to it and i'm real tolerant now. I guess he tried to switch me to what was most comparable to what i was taking. He's not keen on raising my dosage and he's a specialist, not a primary doctor so I may need to consult a regular doctor soon to get relief. The insurance issue is killing me though so I've been trying to put that off for as long as possible. I can't imagine finding a dr. I can afford without insurance or one who will charge me less until I get some. We'll see.

Anonymous

Postby Anonymous » Fri Sep 15, 2006 9:48 pm

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Last edited by Anonymous on Thu Mar 29, 2007 4:24 pm, edited 1 time in total.

FidgetBoy
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Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Postby FidgetBoy » Sat Sep 16, 2006 4:38 am

Beanie-I was taught in school that when you switch a patient from one narcotic to the other, you calculate out the equivalent dosage and then drop the dose of the new narcotic by 10-30%. Every narcotic is slightly different structurally, so you expect the new narcotic to always be stronger due to the switch causing your tolerance to drop off slightly. So your dose of 2 mg sounds about right, plus I think Dilaudid only comes in 2 mg and 4 mg tabs... I'll have to check online.

Em-Each narcotic has a different strength-the strongest oral narcotic available is methadone. The problem is, while the strength of a narcotic is a good way to estimate how a patient will respond, it alone is not enough to completely estimate a person's response. Many patients will tell me that dilaudid "worked" for them but not methadone, or morphine helped but not dilaudid, etc. Since we don't completely understand all the sudden nuances of the central nervous system, we end up using "lower" strength opiates first in most patients and move to moderate to higher potency opioids if those fail. Having said that, many health professionals will actually substitute narcotics WITHIN a potency class because they've noticed the same pattern I have... you can never accurately predict with absolute certainty which narcotic will work in every patient. That was why I was so disappointed when you didn't respond to oxycodone... I was fervently hoping that even though both oxy and meth are similar narcotics, you had some small chance of responding by switching. I just wish my fervent hope had translated into a better outcome for you. Can I ask what Dr. B's thought is on why you aren't responding to the methadone?
Josh

Anonymous

Postby Anonymous » Sat Sep 16, 2006 2:44 pm

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Last edited by Anonymous on Thu Mar 29, 2007 4:24 pm, edited 1 time in total.


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