Infusion Update

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.
Polar Bear
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Re: Infusion Update

Postby Polar Bear » Mon Mar 06, 2017 12:26 pm

will likely keep augmentation at bay and hopefully no issues with tolerance until I get back to California in a few months. I'd rather wait until I am back to start making med changes. It will be easier that way. I only need to hold out a short time. I can do that!

Ann - my wish for you - that you get to waken to the 'birdies sing an' everything'

California, here I come right back where I started from.
Where Bowers of flowers bloom in the sun.
Each morning at dawning, birdies sing an' everything.
A sunkist miss said, "Don't be late" that's why I can hardly wait.
Open up that Golden Gate,
California here I come.
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

legsbestill
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Re: Infusion Update

Postby legsbestill » Mon Mar 06, 2017 8:36 pm

Good luck, Ann.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Mon Mar 06, 2017 11:18 pm

What a lovely thing to see after grading student papers...
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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Re: Infusion Update

Postby badnights » Wed Mar 08, 2017 9:43 am

Happy Birthday (late) to Sleepy Angel!

Ann, regarding iron crossing the bbb wrote:I've read of at least two different experiments to get things through the blood brain barrier. I posted one of them a year or so ago.
I've often wondered what the obstacles are to injecting some kind of iron directly into the CSF. Like a lumbar puncture in reverse. Pain, risk of bleeding & maybe infection; and not knowing what or how much to inject nor how you could experiment to determine those things?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

fuz_mind
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Re: Infusion Update

Postby fuz_mind » Fri Jun 16, 2017 5:40 pm

ViewsAskew wrote:I love this place.



love it too!

fuz_mind
Posts: 59
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Re: Infusion Update

Postby fuz_mind » Fri Aug 11, 2017 4:09 am

[quote="ViewsAskew"] To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200.

hello viewsakew, i don't think I really understand the above very well, do you mind explaining it for me? I was under the impression that it is ok as long as we keep ferritin >100. have I misunderstood what you are saying i.e. your ferritin needs to be > 200 to manage your symptoms?

Polar Bear
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Re: Infusion Update

Postby Polar Bear » Fri Aug 11, 2017 8:10 am

fuz_mind - in general an RLS sufferer should aim to have their ferritin level up around 100 which is higher than the accepted 20 as being normal. However, for some people a level of 100 is not sufficient and they find their symptoms can be easier controlled and augmentation better avoided if their ferritin is much higher than 100, for example around 200. (and also higher) We are all different and the level at which ferritin will benefit our symptoms will vary.

For many years my ferritin was in the 70/80 region and last year it was around 130, I wasn't taking any OTC Iron supplement and how it managed to rise to this I don't know, but I'm happy that it has done so.
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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Re: Infusion Update

Postby ViewsAskew » Fri Aug 11, 2017 5:03 pm

fuz_mind wrote:
ViewsAskew wrote: To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200.


hello viewsakew, i don't think I really understand the above very well, do you mind explaining it for me? I was under the impression that it is ok as long as we keep ferritin >100. have I misunderstood what you are saying i.e. your ferritin needs to be > 200 to manage your symptoms?


I think Polar Bear answered, but wanted to make sure you didn't think I was ignoring you :-). Yes, I need mine to be greater than 200* to reduce symptoms by about 50%. Does not eliminate them, but reducing opioids by 50% is a very good thing. I still get some benefit in the 100s, but as it decreases, the symptoms increase. By the time I hit 100 or so, I have lost all benefit.

The Johns Hopkins researchers figured this out. They would test the ferritin immediately when symptoms were eliminated or reduced. Then, they would take the measure again when symptoms recurred. That is how they realized that the level was different for people. They recommend that anyone who gets an infusion have ferritin measured multiple times so that you know the values at which it helps and at which it does not.

When I had my first infusion, I only had reduced symptoms for a week. The level plummeted quickly. The second time, I had full benefit for a few months, and partial benefit for almost a year. So far, after my third, it has been 7 months and I still have full benefit, so am guessing my ferritin is still around 200 or a bit higher.

*I am not sure of the exact value because my doc did the wrong test one time so there was a several week lag before the right test was done, and no test was done the other two times. What I know is that when it was around 175 I was already seeing decreased benefit, so am guessing that it is around 200 where I get the full benefit.
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.

fuz_mind
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Re: Infusion Update

Postby fuz_mind » Sat Aug 12, 2017 9:57 am

ViewsAskew wrote:
fuz_mind wrote:
ViewsAskew wrote: To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200.


hello viewsakew, i don't think I really understand the above very well, do you mind explaining it for me? I was under the impression that it is ok as long as we keep ferritin >100. have I misunderstood what you are saying i.e. your ferritin needs to be > 200 to manage your symptoms?


I think Polar Bear answered, but wanted to make sure you didn't think I was ignoring you :-). Yes, I need mine to be greater than 200* to reduce symptoms by about 50%. Does not eliminate them, but reducing opioids by 50% is a very good thing. I still get some benefit in the 100s, but as it decreases, the symptoms increase. By the time I hit 100 or so, I have lost all benefit.

The Johns Hopkins researchers figured this out. They would test the ferritin immediately when symptoms were eliminated or reduced. Then, they would take the measure again when symptoms recurred. That is how they realized that the level was different for people. They recommend that anyone who gets an infusion have ferritin measured multiple times so that you know the values at which it helps and at which it does not.

When I had my first infusion, I only had reduced symptoms for a week. The level plummeted quickly. The second time, I had full benefit for a few months, and partial benefit for almost a year. So far, after my third, it has been 7 months and I still have full benefit, so am guessing my ferritin is still around 200 or a bit higher.

*I am not sure of the exact value because my doc did the wrong test one time so there was a several week lag before the right test was done, and no test was done the other two times. What I know is that when it was around 175 I was already seeing decreased benefit, so am guessing that it is around 200 where I get the full benefit.



thanks polarbear & views for explaining! it's clearer to me now :)

ViewsAskew
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Lions and tigers and augmentation, oh my

Postby ViewsAskew » Sun Sep 03, 2017 10:49 am

Well, after I wrote about schedules, I changed my mind. I really like - more than anything I have tried - the combo of the opioid and the DA. So, after 10-15 days break from pramipexole, I convinced myself that it could not be augmentation and must have been something else (Oh, the power the mind to delude oneself). Then I decided I was REALLY going to keep taking the pramipexole until I was SURE I was augmenting (said as only someone who is not near augmentation can say). I think this was in mid-March.

Two weeks ago - so mid August, I decided I really was augmenting. I originally I augmented in about a week, so 5-6 months without is quite an improvement! I didn't want to wait too long, but wanted to be sure it was augmentation. Not sure I waited long enough, but as Deb noted in her thread about augmentation, I also wanted to prevent the horrible aftermath! I stopped after 4 days of increased/earlier symptoms. The symptoms were occurring at the same time and without daytime tiredness. They were strong and my only option was to immediately get up and move.

I am on Day 12 now after stopping. Days 1-4 were miserable for multiple reasons. As I noted earlier in this thread, methadone has such a long half-life that it takes a good week of increased dosages before it is built up. I did not really sleep well until Day 7. Days 8-11 were not too bad and I reduced meds a bit - but golly I surely remember why I dislike that drug as the primary option! I slept from 5 Am until 7 PM on day 7 - 14 hours!!!!!. Since then, I have slept 10-12 hours. When i cut the dose back, the RLS is strong enough that I dream I am moving and have to drag myself out of deep sleep to wake up. Tonight iItook a bit less - should be in bed but had to finish an assignment for my students - took me 90 minutes of headbobbing and retyping because I was so tired. No RLS when i came here, but there is now,. sadly. I just took .5 more. Hope that does it, but I may need more - I am bobbing and weaving in my chair as I type, lol.

I had been using about 4 parts pramipexole and methadone combined for the last few months -a part is 5 mg methadone or .0625mg pramipexole . In a perfect world, I would have moved slowly to 20 mg methadone - the equivalent of 4 parts - but did not want to take a week or more to stop the pramipexole, so I stopped the pramipexole cold turkey and went straight to 25 mg methadone, hoping 5 parts would cover while it built up. It did not cover - and I do not know whether it is augmentation or waiting to get enough in my system. I used 27.5 on Day 2 and 30 mg on Days 3 -6. I was down to 27.5 last night. Tonight Itried 22.5, but just bumped it.
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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Re: Lions and tigers

Postby badnights » Mon Sep 04, 2017 6:48 pm

Oh geez, Ann. It was worth a try, though, wasn't it? I don't know if you're ready for this question, but what is the plan for your next regimen?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Tue Sep 05, 2017 5:06 am

Well, and to get six months was substantial after augmenting originally in a week - right????

I was hoping to be living in LA by now. Things have conspired so that is not the case. I need my annual visit in October, so we better be there by then! He will test iron/ferritin then and we will see!

Last night I took 25 mg of methadone and no twitches, so tonight am trying 22.5. I took my second dose a bit late, though, so I may not have the results I want...
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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Re: Infusion Update

Postby badnights » Thu Sep 07, 2017 4:32 am

Sometimes I hate things ....
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Thu Sep 07, 2017 8:31 pm

badnights wrote:Sometimes I hate things ....


Just sometimes??????

:mrgreen:
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: Infusion Update

Postby ViewsAskew » Fri Sep 08, 2017 8:50 pm

Something I was thinking about and thought I would share...

I find that timing with methadone (and other pharmaceuticals) is crucial - and I tend to forget that when I switch and come back to it. It takes between 30 minutes and 4 hours to become effective and most people find it takes at least an hour or two. For me, a small amount is effective as soon as 30-40 minutes, but the entire amount seems not to work for at least 3 hours, maybe even 4.

Since symptoms that I cannot ignore start at least 8 hours before bedtime, if I want to get to sleep by midnight, I need a bit of coverage by 4 PM, a bit more by 8 PM, and a lot by midnight. That means taking meds by 3:30 at the latest so that a bit kicks in by the time the symptoms do and the full amount of that dose by 8 PM, then taking the rest of my meds by 8 PM, so that I have full coverage of those plus the by midnight.

Sometimes I split it into three doses, with 1/4 or 1/5th my whole dose first, then 1/2 to 3/5 next, and a final small dose, 1/4 to 1/5th about an hour to two before bed.
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.


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