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.
ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Sat Feb 11, 2017 10:51 am

badnights wrote:If you want to be sure of which emoji you chose, click Preview instead of Submit. If you like it, you then Submit.

n my head my rls seems something like a fully formed foe - it looks a bit like the Balrog in the Lord of the Rings film (as in 'YOU SHALL NOT PASS')
In my head, RLS/WED is something that shouldn't be there. I shouldn't be sick. I still can't accept that I'm that person with a chronic disease. It feels all wrong somehow.


Not sure I feel this way about the RLS, but absolutely about the chronic part, as well as how much it has harmed me. Maybe because I've had it since I was a kid - it seems part of me.
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Re: Infusion Update

Postby badnights » Sat Feb 11, 2017 10:56 am

ya, the RLS itself is familiar and melded right into my sense of reality. But the fact that it's a disease that has sucked the life blood from me, I can't incorporate that into my reality. The fact that I'm effectively disabled. That's what seems so off, so wrong.

you?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Sat Feb 11, 2017 12:01 pm

badnights wrote:ya, the RLS itself is familiar and melded right into my sense of reality. But the fact that it's a disease that has sucked the life blood from me, I can't incorporate that into my reality. The fact that I'm effectively disabled. That's what seems so off, so wrong.

you?


Yup - I can't believe I still fight it, I mean it's only been 12 years since I lost my life as I knew it. And it was hangin' by a thread for 5 years before that.
Ann - Take what you need, leave the rest



Managing Your RLS



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debbluebird
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Re: Infusion Update

Postby debbluebird » Sun Feb 12, 2017 12:14 am

I agree. You go from being productive, active, etc., then life becomes very different. It took me several years to adjust.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Sun Feb 12, 2017 8:07 am

But, you did, Deb. You retired, did things differently. Beth and I are acting Einsteins definition of insanity...well at least I quit work last year, but I STILL look at jobs, occasionally send resumes, and DREAM of working full time again, even though unless something changes a LOT, that will never happen. I just don't see myself this way.
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
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Re: Infusion Update

Postby debbluebird » Sun Feb 12, 2017 1:28 pm

I still dream if working.

Polar Bear
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Re: Infusion Update

Postby Polar Bear » Sun Feb 12, 2017 5:27 pm

You know - I've never considered myself as disabled.
But actually, I probably am. I'm not just weird.

I didn't work easily in the same environment as others. I stood at my desk, I raised my computer up onto a coffee table that sat on my desk. All the while not even standing still.

And just consider sorting everyday life - so many things have to be considered in advance.

An aircraft journey - Could write a book!!

On a long car journey I must allow for time to have a break for a stretch. Not just a wee comfort stretch, but a w a l k i n g s t r e t c h that will make the difference between me arriving at my destination ready to continue with whatever has been planned...... or arriving as a jiggling mess who bounces out of the car, stamping my feet to get an alternative diversionary feeling to offset the RLS creepies and heading down the road needing probably a good brisk 15 minute walk before expecting any easement.

Going away overnight with girlfriends - I need my own room, no way could I subject a friend to my nocturnal ups and downs whilst in a strange room, tossings and turnings, reading a Kindle and walking about, reading and bumping the furniture.

I am the person who needs a dining table in a corner so that if necessary I can stand up whilst others are eating. Not just the table in the corner, the actual chair in the corner !!

Shoes - I want shoes that will slip off so that I can put my feet onto a cold floor or a textured floor - diversionary sensation.

Trains/buses - I want to travel by train so that I can walk up and down, yes I'm the weirdo that is walking and going nowhere.

Going to the hairdresser/chiropodist/dentist - get well medicated ahead of time.
Despite being medicated - there was the time I was having dental treatment and both legs were on the go at the same time, jiggle jiggle, twist and turn. Disconcerting for the dentist and horrible for me.
Or the time whilst in the chiropodist's chair - yep, I just jumped up, me and my bare feet, and shouted 'gotta move'. That was a particularly startling Jack In The Box moment.

badnights has referred to 'the life blood sucked out of me' - that says such a lot. It is so true. But to the person who is RLS unaware they reckon we just have a little twitchy trouble - it's not as if we are going to die !!

A few days ago I'd just about had it. My RLS was as normal, no worse than usual. At the same time I deal with several other chronic conditions and on this particular day they were all playing up. So with pain, fatigue, days that last practically 24 hours (don't they all), symptoms that all started to blend and an element of self pity - it can all get pretty crap, the occasional tear can be shed before giving the proverbial shake and getting on with it.

And we do shake and get on with it because you know what folks - There is no other option.
There are bad days and good days. That's life.

Yes Views - you still fight it and dream.
And the dreams still have to be woven around the insideous disease that is RLS.
I looked 'insideous' up in the dictionary ........ operating or proceeding in an inconspicuous or seemingly harmless way but actually with grave effect:
Perhaps not actually 'inconspicuous and harmless' as we have to cope with the creepy crawlies etc but the fact is that the creepy crawlies are only a part of it, there is the ongoing 'grave effect' and who knows what that might be. We often say that with RLS we are all different, our 'grave effect' is likely also to be different. Lack of sleep, lack of employment, lack of relationships, lack of social life, fear of being able to cope. Willing to consider what might be an illegal drug (in certain areas) in order to find blessed sleep and/or some semblence of normality.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Mon Feb 13, 2017 5:58 am

I love this place.
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 » Tue Feb 14, 2017 4:58 am

I settled on .125 pramipexole and 5 mg methadone as what I hoped would be my regular dose. All was good. Last night, I set out that much, munched half of the pramipexole, set it down, then went about my evening. When I got to my desk this morning, I found the other half sitting on my pill case. I never took it and never needed it.

Am thinking if I keep the methadone consistent at 5 mg and not use it to cover, I'll find out. The residual methadone when I bump it up on nights I have severe breakthrough may keep me from determining a consistent amount. Or maybe it's just that variable.

So, new test - do not increase the methadone - 5 mg a night, no matter what. If I can't sleep, I either stay up or take a bit more pramipexole (and stay up waiting for it to work).
Ann - Take what you need, leave the rest



Managing Your RLS



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legsbestill
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Re: Infusion Update

Postby legsbestill » Tue Feb 14, 2017 11:50 pm

Good luck, Ann

Thank you for an amazing post PolarBear.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Wed Feb 15, 2017 5:39 am

Stuck to it last night - 5 mg methadone. Took the larger half of pramipexole I'd left sitting out. I woke some; once did get up for a few minutes and then did some bed gymnastics, but didn't take more. I feel sort of silly trying to get this to a perfect dose, but I want it just shy of perfect control for two reasons. I don't want a dash more DA than I have to and I want to avoid tolerance if I can.

Which brings me to my next trial (if I keep taking the drugs and don't do a wash of everything). I have to decide how LONG to take pramipexole without stopping. I originally augmented in days - but my serum ferritin was very low - 16 on the first test, IIRC, and 8 on the second. But, with the ferritin much, much higher and having not taken a DA for several years afterward, I am hoping that I could go longer. But, how long?

I use less when I take them together. I have fewer side effects. My sleep is more balanced. But, I do NOT want to augment. Do I try two months, say, then take a break? Three? How long of a break? Or do I take more frequent breaks for shorter duration?

Ah, questions, questions. But, all in all, nice to be problem solving this than what I've had to solve before!
Ann - Take what you need, leave the rest



Managing Your RLS



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legsbestill
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Re: Infusion Update

Postby legsbestill » Wed Feb 15, 2017 12:25 pm

I would be really interested to hear how long you manage also - it would be a good indicator of just how important those ferritin levels are. The more I learn the less I know but it seems to me that the most effective treatments for difficult cases involve a combination of a number of factors/drugs ... and a willingness to keep experimenting and never stop acquiring information. Information and a multi-pronged attack may be our best weapons against this condition. I think that is one of the hardest things to grasp post-augmentation. Most have been used to the simplicity of the one drug killer blow (albeit in ever increasing quantities) and then they (we) have to go through the horrors of da withdrawal only to be met with the often I effectiveness of the a2d ligands, and scare-factor and side-effects of opiates and benzodiazepines. It can take a long time to achieve a workable solution and then starts the tweaking process.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Thu Feb 16, 2017 1:45 am

Ferritin is crucial. The issue is that we do NOT know how to get it to the brain. It cannot easily get by the blood brain barrier. When some people take iron - whatever form, including infusion - they get their ferritin at a level at which their symptoms are gone. Completely. Others find that symptoms are diminished, some get no help. 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.

Then, there are people who cannot get relief, as Steve noted, because of a protein. So, take all the iron you want, no help.

My guess is that there are also multiple forms of RLS (the research bears this out). So, ferritin may not work the same in all forms.
Ann - Take what you need, leave the rest



Managing Your RLS



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Rustsmith
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Re: Infusion Update

Postby Rustsmith » Thu Feb 16, 2017 3:19 am

To Ann's comment about multiple types of RLS, there are six different genes that have been linked to RLS so far. The function of these genes is not yet known, but one of them is thought to involve the iron transfer protein that she mentions.

And this discussion reminded me of the fact that iron plays a critical role in the chemistry of dopamine production in the brain and interestingly enough, it appears that vitamin D is also involved in this process. I really need to go back and read more on the chemistry of natural dopamine production. There are so many critical steps and if you mess with one of the key reactions by doing something like reducing available iron, then things are going to get out of whack.
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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Re: Infusion Update

Postby ViewsAskew » Fri Feb 17, 2017 9:07 pm

Am feeling a bit more secure that this is real. After a few days of vigilance, I've been able to keep the methadone to 5 mg and take around .09 mg pramipexole and have it be reasonable - not perfect, but good. I am using kratom as needed - some nights none, some 1-2 grams. I do wake up several times, but usually after complete sleep cycles. I usually wake up after one sleep cycle, then get 1-2 more cycles before I wake up, then wake up a 2-3 times in the last cycle. I sleep about 8 hours total, sometimes with a short (20 to 60 minutes) break in the middle, sometimes, not. I usually can get back to sleep without much effort. I have NO idea about the PLMS - my husband hasn't said anything and I am never aware of them. I have no PLMW at this time.

Give that 3 months ago I was taking 30-35 mg of methadone, or .50 mg of pramipexole and still not sleeping well, this really is extraordinary. For the first time in years, my brain is relatively clear and I think my memory has improved. No more noun aphasia! Well, not much :-). Aging is aging, after all.

I emailed Dr. B to ask his opinion about how long he thinkgs I should take the pramipexole without a break - have not heard back yet. The longer I take it, the longer the break I'd need (I think). So, if I went 8 weeks, say, I think I'd need 14 days off. But, I really am not sure. But, shorter durations are harder to manage - the frequent changing is a pain. With very short durations, I'd only need 1-2 days break. A bit longer, likely 5-7. Also have to decide if I care to take a break from methadone. To prevent tolerance, I should. That means three rotations.

Possibilities...

6 weeks combined, 2 weeks pramipexole only, 2 weeks methadone only. Repeat

4 weeks combined, 1 week pramipexole only, 1 week methadone only. Repeat

But, methadone has such a LONG half life, a week off really may not be enough...or, maybe it's enough to help with tolerance, but not to go through complete withdrawal.

8 weeks combined, 4 weeks pramipexole, 2 weeks methadone...

NO idea...
Ann - Take what you need, leave the rest



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