Here I go...

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.
jul2873
Posts: 392
Joined: Thu Nov 15, 2012 7:32 pm

Re: Here I go...

Postby jul2873 » Thu Jun 09, 2016 8:25 am

Well, Ann, the thing to keep in mind with kratom is that while we can weigh how much of the powdered leaf we take, we really have no idea how strong that particular leaf is. I'm sure some batches of kratom have more of the alkaloids that help, than others do--even though both batches may be from the same kind of tree, or even from the same tree! It's one reason this attitude of the FDA is so frustrating--it's preventing much research, that might result in a drug company extracting the alkaloids and putting them in a medication that we would know was safe and would know exactly how much of the alkaloid we are getting. More and more, I'm just listening to my body, and taking what I need to tame the RLS at a particular moment, and not worrying that I'm taking too much or too little. I find that my body seems to adjust. If it pushes me to take more at one point, less helps later. Luckily, I can wait until the RLS is raging, and the kratom will still quiet it usually within twenty minutes--sometimes less--as long as I've taken it dissolved in orange juice. But I'm glad to hear that it is helping you. All the best . . .

Mary

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Thu Jun 09, 2016 9:12 am

That's always been one of my issues with it - you truly cannot know. And, that is the case with many supplements.
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.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Thu Jun 09, 2016 9:43 am

So - experiment may be over for a month. In the US, insurance is still an issue for many of us. When my contract with the university ended on May 15, I assumed I'd go back to the exchange for coverage. But, you have to purchase it by the 15th of the month to be covered by the 1st of the next month. And, I still had insurance on the 15th, so I couldn't purchase it. Now I have to wait and will not be covered until July 1. I could take COBRA, but that would cost about $750 a month; the exchange plan I've chosen would cost $450.

I thought about just taking COBRA for a month or two - I've met my deductibles - but that isn't how it works. If I choose COBRA, I am stuck with it until December 31. Given the increased cost of the plan, that seems silly to do. In just a few months I'd have paid more than a deductible on the plan I am choosing.

And why is this important? Because I really need to have the infusion before I continue because of augmentation risk and because this one should push me high enough for long enough that I may have reduced symptoms for awhile - not just a few weeks. Most pressing is that I've pushed the pramipexole as far as I can...yesterday my symptoms had the faint twinge of augmentation - stronger, harder, lasting longer and occurring earlier. I'm glad I've broken the dependence on the opioid - it will make the next few weeks easier.

I tried hydromorphone tonight. I get about 2 hours of relief before the sensations and movements from the PLMW drive me crazy. Not a good match for me. I have oxycodone, but it works about the same - at least it did - as the hydromorphone. I hate going back to the methadone this quickly; I have enjoyed being much more awake and functional during the day. Alas...I don't have extended release of either and am not sure it would be that different. Then again, maybe it would! The half life would be much shorter....
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: 981
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Here I go...

Postby stjohnh » Thu Jun 09, 2016 1:55 pm

jul2873 wrote:Well, Ann, the thing to keep in mind with kratom is that while we can weigh how much of the powdered leaf we take, we really have no idea how strong that particular leaf is. I'm sure some batches of kratom have more of the alkaloids that help, than others do.....


I've had that same concern as well, now that I've been on Kratom for 6 months or so and found it helpful longer-term. After finding the lower prices at SoCal herbal remedies, I bought a kilogram for $100. At the rate I use it, 1.5 grams daily, it should last two years before I have to buy another batch. I divided it into several glass jars with good tops, put most of it in the freezer and just have one bottle out for when I make up new capsules. Freezing should make problems of decreasing potency or mold nearly non-existent. One kilogram of Kratom powder is about 2.5 quarts.

At $4 a month, this comes out to be the least expensive medicine I've used in many many years. :D
Blessings,
Holland

debbluebird
Posts: 2068
Joined: Mon May 21, 2012 3:27 pm

Re: Here I go...

Postby debbluebird » Fri Jun 10, 2016 1:42 am

ViewsAskew wrote:So - experiment may be over for a month. In the US, insurance is still an issue for many of us. When my contract with the university ended on May 15, I assumed I'd go back to the exchange for coverage. But, you have to purchase it by the 15th of the month to be covered by the 1st of the next month. And, I still had insurance on the 15th, so I couldn't purchase it. Now I have to wait and will not be covered until July 1. I could take COBRA, but that would cost about $750 a month; the exchange plan I've chosen would cost $450.

I thought about just taking COBRA for a month or two - I've met my deductibles - but that isn't how it works. If I choose COBRA, I am stuck with it until December 31. Given the increased cost of the plan, that seems silly to do. In just a few months I'd have paid more than a deductible on the plan I am choosing.

And why is this important? Because I really need to have the infusion before I continue because of augmentation risk and because this one should push me high enough for long enough that I may have reduced symptoms for awhile - not just a few weeks. Most pressing is that I've pushed the pramipexole as far as I can...yesterday my symptoms had the faint twinge of augmentation - stronger, harder, lasting longer and occurring earlier. I'm glad I've broken the dependence on the opioid - it will make the next few weeks easier.

I tried hydromorphone tonight. I get about 2 hours of relief before the sensations and movements from the PLMW drive me crazy. Not a good match for me. I have oxycodone, but it works about the same - at least it did - as the hydromorphone. I hate going back to the methadone this quickly; I have enjoyed being much more awake and functional during the day. Alas...I don't have extended release of either and am not sure it would be that different. Then again, maybe it would! The half life would be much shorter....


Insurance is such a problem. I remember when I was a kid, the doctor came to the house when we were very sick and we paid cash, when the bill came. I was in the hospital for several days when I was 12. Again, my family paid cash. Having worked in the medical field, I know first hand some of the in and outs. It just amazes me how things have changed. Your situation is probably not unique. That is the sad part. I wish I had an answer. Other than to contact Dr. B's office, to see if there was any solutions that you are unaware of.
I was without insurance for two years, when I was first put on disability. I just held my breath the whole time.
All my best to you. Again, I wish I had an answer.

Rustsmith
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Location: Pueblo, Colorado

Re: Here I go...

Postby Rustsmith » Fri Jun 10, 2016 2:15 am

Ann, by all means talk with the providers. Several years ago we thought that my wife was still covered by my insurance policy after I retired. Her doctor ordered an MRI, which my insurance approved. Then when the insurance company received the bill, they decided that she was no longer covered because she has Medicare due to her disability. The bill that was sent for insurance coverage for the MRI was for $5000, which had a "negotiated" reduction to $2600, but we were not receiving a bill for $5000. I called and told them that she did not have insurance and I offered to pay the $2600 rate in several installments. At that point the billing clerk for the MRI office replied, Oh, if she doesn't have insurance coverage then the rate is $500. Needless to say I gladly sent a check for $500.

So, check to see what the uninsured cost of the infusion is. You might be pleasantly surprised.
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.

ViewsAskew
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Location: Los Angeles

Re: Here I go...

Postby ViewsAskew » Fri Jun 10, 2016 3:00 am

stjohnh wrote:
jul2873 wrote:Well, Ann, the thing to keep in mind with kratom is that while we can weigh how much of the powdered leaf we take, we really have no idea how strong that particular leaf is. I'm sure some batches of kratom have more of the alkaloids that help, than others do.....


I've had that same concern as well, now that I've been on Kratom for 6 months or so and found it helpful longer-term. After finding the lower prices at SoCal herbal remedies, I bought a kilogram for $100. At the rate I use it, 1.5 grams daily, it should last two years before I have to buy another batch. I divided it into several glass jars with good tops, put most of it in the freezer and just have one bottle out for when I make up new capsules. Freezing should make problems of decreasing potency or mold nearly non-existent. One kilogram of Kratom powder is about 2.5 quarts.

At $4 a month, this comes out to be the least expensive medicine I've used in many many years. :D


I tested varieties from about 4 places that came well recommended. And I placed my next order with SoCal. I am not quite ready for a kilo, lol, but did just by 250 grams. I am using much more - about 8 mg a day - while going through opioid withdrawal. But, since I started back with them, guess I don't need it so much!
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.

ViewsAskew
Moderator
Posts: 15817
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Here I go...

Postby ViewsAskew » Fri Jun 10, 2016 3:04 am

debbluebird wrote:
ViewsAskew wrote:So - experiment may be over for a month. In the US, insurance is still an issue for many of us. When my contract with the university ended on May 15, I assumed I'd go back to the exchange for coverage. But, you have to purchase it by the 15th of the month to be covered by the 1st of the next month. And, I still had insurance on the 15th, so I couldn't purchase it. Now I have to wait and will not be covered until July 1. I could take COBRA, but that would cost about $750 a month; the exchange plan I've chosen would cost $450.

I thought about just taking COBRA for a month or two - I've met my deductibles - but that isn't how it works. If I choose COBRA, I am stuck with it until December 31. Given the increased cost of the plan, that seems silly to do. In just a few months I'd have paid more than a deductible on the plan I am choosing.

And why is this important? Because I really need to have the infusion before I continue because of augmentation risk and because this one should push me high enough for long enough that I may have reduced symptoms for awhile - not just a few weeks. Most pressing is that I've pushed the pramipexole as far as I can...yesterday my symptoms had the faint twinge of augmentation - stronger, harder, lasting longer and occurring earlier. I'm glad I've broken the dependence on the opioid - it will make the next few weeks easier.

I tried hydromorphone tonight. I get about 2 hours of relief before the sensations and movements from the PLMW drive me crazy. Not a good match for me. I have oxycodone, but it works about the same - at least it did - as the hydromorphone. I hate going back to the methadone this quickly; I have enjoyed being much more awake and functional during the day. Alas...I don't have extended release of either and am not sure it would be that different. Then again, maybe it would! The half life would be much shorter....


Insurance is such a problem. I remember when I was a kid, the doctor came to the house when we were very sick and we paid cash, when the bill came. I was in the hospital for several days when I was 12. Again, my family paid cash. Having worked in the medical field, I know first hand some of the in and outs. It just amazes me how things have changed. Your situation is probably not unique. That is the sad part. I wish I had an answer. Other than to contact Dr. B's office, to see if there was any solutions that you are unaware of.
I was without insurance for two years, when I was first put on disability. I just held my breath the whole time.
All my best to you. Again, I wish I had an answer.


No, I know my situation is not unique...but I am still in a much better place than 6 years ago! Right before the ACA went into effect, I'd lost my insurance and couldn't get any. I went almost two years without. I can't talk (or type) about it without wanting to go a political rant!

I didn't sleep any last night or today. I got a jump start on our impending move, assembling things for the eventual garage sale.
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.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Here I go...

Postby badnights » Sat Jun 11, 2016 8:21 am

What does the infusion cost, Ann? And did you get an uninsured price on it?
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.

ViewsAskew
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Location: Los Angeles

Re: Here I go...

Postby ViewsAskew » Sat Jun 11, 2016 2:11 pm

I negotiated with the hospital the first time - it was around 3000.00 US for the uninsured price. I instead went to see Dr. and had it done there - the pharmacy contracted a home health nurse who came to the house and did it. It was $500 the first time and $700 the second, plus my flight. So, much less to go to CA and have it done. But, I may be able to have the pharmacy ship it to me and have them find a home healthcare worker here to do it.

In the meantime....no sleep on Wednesday night, about 4 broken hours total on Thursday night (20 minutes here, 30 there, etc), and maybe another 4 hours last night - again all broken into short fragments.
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.

debbluebird
Posts: 2068
Joined: Mon May 21, 2012 3:27 pm

Re: Here I go...

Postby debbluebird » Sat Jun 11, 2016 5:36 pm

Sorry you aren't doing any better either.

Polar Bear
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Re: Here I go...

Postby Polar Bear » Sat Jun 11, 2016 7:37 pm

I do hope you make progress with infusion plans. You must be exhausted - fragmented sleep is of such little value.
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

ViewsAskew
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Location: Los Angeles

Re: Here I go...

Postby ViewsAskew » Sat Jun 11, 2016 9:14 pm

I slept another hour from 2-3, then 3:15 to 4 PM.
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.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
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Re: Here I go...

Postby ViewsAskew » Tue Jun 21, 2016 6:40 am

I decided to purchase a plan from the Exchange that has the lowest deductible I could find - it, of course, cost more per month. But, with a sleep study, an infusion, and a visits to several doctors, that should be worth it. Just glad I am one who can afford it at this point, as I know many could not.

I went through the list of doctors already and have emailed two of the sleep docs to see if they would be able to help. I heard of a doctor who was moving to Chicago and wanted to open a practice that was certified by the RLS Foundation - thought that would be great! Except he's opening a pediatric practice. I heard of another doctor who supposedly can treat RLS and who some at the Foundation know. Except he is not covered in the plan I selected. Of course not, lol.

I just need someone - either my GP or sleep doc - to agree to Dr. B's script for an infusion and to order it. it's been at least ten years since I had a sleep study, so I'm open for a new one, though sure it won't tell us much. I'd rather just have something I could attach to my legs to record movements at home and that I could use multiple nights. Most docs don't prescribe those, though. I remember Dr Rye explaining that this is the only way he does sleep studies - using an Actigraph - and I can remember wishing I were in Georgia!

At any rate, onward!
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.

debbluebird
Posts: 2068
Joined: Mon May 21, 2012 3:27 pm

Re: Here I go...

Postby debbluebird » Tue Jun 21, 2016 7:47 am

Interesting. You never know, how your sleep may have changed. Glad you found an insurance.


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