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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Infusion Update

Postby ViewsAskew » Fri Feb 03, 2017 4:34 am

With going back and forth to CA to work with Dr B as well as getting ready to move and again teaching classes at a university, my life has been a bit more hectic than I prefer. Hoping to be packed and moved by May. I originally said I hoped March, husband said July - am hoping we split the difference and go in May. The condo is almost ready to sell - having floors redone next.

I went out in September and established residency and was able to get insurance through the ACA (don't even get me started on that with the new changes coming). It took about 6 weeks to get to see the hematologist and he agreed to follow Dr Bs protocol. I had that in mid-November. They did it in two infusions instead of two. And, it wasn't until they charged another $800 that I realized that they had given me more iron than they were supposed to. I don't think the doctor shared the protocol with the nurse who adminsisters the infusions - she is only at this site one day a week. A long story as to why, but I thought they were splitting it into two treatments, two weeks apart, each of 500 mg. But, they gave me 750 each time, instead. I didn't put that together until the last drops of the second 750 were draining...

I ignored it - I just didn't want to think about what that could mean and chose to instead believe that all would be fine.

Three weeks later, I was driving my friend to Colorado - she was moving from Chicago and has lupus and gets fatigued easily, so driving alone was a bit scary. I was hoping to see some improvement as I'd been able to reduce meds at the 3 week mark after the other infusions, but I did not. After 4 or 5 weeks, I just figured it didn't help even though it's always helped before right around the 3 week mark.

My plan was to have it work, stop the opioid and stay on pramipexole for 2 months to get the opioid out of my system, then stop the pramipexole, too, and see what happened with no drugs. Before the infusion I had hit a rough patch and 30-35 mg methadone wasn't always enough when I used it alone (I wanted to take a break from pramipexole so I'd limit my chances of augmenting. I normally need about .325 mg pramipexole when I use it alone and after I stopped the methadone, I needed .50! I was relatively resigned about that time that this was $1600 wasted.

I decided to go back to methadone three weeks ago to take a break from the pramipexole and figured I'd go back to alternating them. I had given up on the idea of taking a complete break. I switched over a week, reducing one while increasing the other. But, the oddest think happened. Instead of the 30-35 mg of methadone I needed pre-infusion, I only needed 17.5! That stayed consistent over the next week. Twice I did need an additional 2.5 mg to get back to sleep, but most nights, I woke up with mild symptoms, read for a little while, and then went back to sleep.

Last night I decided to try the two together. I used about .03 mg pramipexole and 7.5 mg methadone and never awakened. I think I could have used less. Not sure about the pramipexole - I had a portion of one-quarter of a .25 mg tablet - so likely around .03 mg. I set out 15 mg of methadone since I'd been taking 17.5 and figured after I took the first 5 mg that I'd just keep adding it until symptoms were covered. I took 5 mg and a few hours later, was tired and didn't seem to have any symptoms - just in case as I got into bed I took 2.5 more, but not sure I needed to.

I realize that an infusion is all about getting the iron to the right place and we never know if it will get there. But to work about 9 weeks after the infusion? I thought that I'd read that the range was 2-8 weeks. And, maybe it was 8 weeks when I first started to switch over - I'd stopped looking for any effect by Jan 1st - which was about 6 weeks.

It has only been one night at this ridiculously low rate. I set out .0625 pramipexole and 5 mg methadone and I'll see what happens.

If this keeps up, I am wondering if I should stop all drugs? Also wishing I were in CA so I could be a blood test to find out where the ferritin is...not sure I can get one here in Illinois and have it covered.
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 » Fri Feb 03, 2017 9:22 am

That's pretty exciting, Ann! It's a pretty solid result even if you've only had one sure night so far. I wonder how long it will last - - it might be worth trying to stop to see where you're at.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Fri Feb 03, 2017 8:54 pm

Last night - .03 (or so) pramipexole and 5 mg methadone - no symptoms. Now, of course, I have a LOT of methadone in my system because of the long half life, but that is ridiculously low. I needed more than that when I first started - I took 10-12.5 my first 3 months on it.

Part of my interest in this was wondering if indeed you really need to STOP these drugs after an adverse event such as augmentation. And, wondering if staying on them - and tolerance, etc. - had artificially increased how much I needed. I'll never tease all that out because of the infusion. And because I ended up with 500 more grams iron than I was supposed to on top of it. Who knows.
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.

Yankiwi
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Re: Infusion Update

Postby Yankiwi » Fri Feb 03, 2017 10:16 pm

That's a great result but with RLS there are so many variables. We are our own guinea pigs but you are doing a remarkable job keeping track of everything that will lead to a better outcome for you.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Fri Feb 03, 2017 11:28 pm

yes, SO many variables. Just hope it isn't a blip, lol.
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.

legsbestill
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Re: Infusion Update

Postby legsbestill » Fri Feb 03, 2017 11:48 pm

Wonderful news. V pleased for you. Long may it last.

debbluebird
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Re: Infusion Update

Postby debbluebird » Sat Feb 04, 2017 1:05 am

Cool, hope it continues.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Sat Feb 04, 2017 8:19 am

Thanks - fingers crossed and all that! It's two AM and I am about to head to sleep. Had .03 pramipexole and 2.5 mg methadone so far - no symptoms. Am thinking I'll try sleeping. If I cannot, I will take the other 2.5 mg methadone.
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 » Sat Feb 04, 2017 11:21 pm

Night three - same as the other two - 5 mg methadone, .03 pramipexole. I forgot to add that I've taken some kratom, too. It really doesn't help with the movements (or hasn't - maybe now that I need less, it might), but absolutely helps me fall to sleep and stay asleep. Methadone alerts me, but worse for me is the fractured sleep from pramipexole. Methadone helps, but not enough. I can usually sleep in two blocks if I add a bit of kratom - once to get to sleep, and then once when I wake up about 2-4 hours after I fall to sleep.

I slept from 3 until 5, was up until 6, then from 6 until 1 PM. I was awake twice in the second round - maybe 20 minutes each, but I didn't get up or keep track.

I have needed, in the past, to take meds about 4 hours after I get up - if I am very active, I can push that to 6 hours. It is a lot longer now - not sure how long because I'd been on methadone only for ten days and my sleep got later and later each day until was sleeping from 8 am to 4 PM. I've moved it back to 3 AM. I can't tell you how happy I'd be to get it to midnight. We will see. And then we will see what time I actually need meds.

If this keeps up for a week to ten days, I may convince myself to stop all meds. It's crazy to try while I'm trying to teach classes and move, but what they heck. I almost feel as if I just must. This is the least medication I've needed in 15 years. While there never is a good time, this may be the best it gets. And, then I'll know what I really need.

Also thinking that if this continues (and trying SO hard not to get ahead of myself) that I could see about switching from methadone to a shorter acting opioid. I am SO tired of the opioid tired. To actually feel awake? Wow. Also wondering if ropinerole might be a good thing to try. Just to see if it affects me differently regarding the constant awakenings.
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.

legsbestill
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Re: Infusion Update

Postby legsbestill » Sun Feb 05, 2017 12:47 am

Am keeping fingers crossed for you. How much kratom do you take? I am finding the opposite of you - it helps with the urge to move (which is quite subdued for me at the moment) but I am getting very little sleep was wondering if a higher dose would help with that.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Sun Feb 05, 2017 1:55 am

It's crazy, to me, how different combinations of things make falling to sleep better or worse. A half capsule (50 mg) of gapapentin will knock me out for a full day if I take it with methadone. But, when I take it with pramipexole? I've gotten up to 700 mg and still awaken frequently and can't stay asleep after about 3-4 hours of sleep. I swear, I just figure when something works, I ask no questions and just do 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.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Sun Feb 05, 2017 1:56 am

Oh - didn't answer - 1-2 grams.
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.

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Infusion Update

Postby legsbestill » Sun Feb 05, 2017 6:06 pm

Maybe that's why the pregabalin doesn't work so well for me any more - I have reduced my dose of OxyContin right down to just one 5mg tablet - so the sweet spot of opiate and pregabalin isn't there ... I think you are far more advanced in the learning process. I tried taking about 3-4g of kratom last night and slept from 2am til nearly 10am which was a wonderful surprise. Will try it again tonight.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Sun Feb 05, 2017 10:47 pm

YAY on the sleep!!!!

I've been at the drug thing since 2004, unfortunately, and have had many too many opportunities to suss out what does and doesn't work - not a badge I want to have, lol.

Last night I screwed myself. I was so over the moon about not having any symptoms in the evening, that I forgot to take anything until bedtime. Oops. Since pramipexole takes 90 minutes, that wasn't wise. And then I only took 2.5 mg methadone at first instead of the 5 mg. It was a looooong night. I didn't get to sleep until about 6 AM, then still needed 2.5 more methadone around 9 AM. Still, that is only 7.5 total methadone. And, I had an inkling that because of the long half life that I really had more methadone in my system, so that I'd likely have to bump that dose a bit as the residual amount decreased. Goal tonight - take 2.5 mg methadone at 8 PM, pramipexole at 11 PM, then 2.5 methadone at 1 AM....then to sleep by 2 AM. A person can dream, can't they?
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.

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Infusion Update

Postby legsbestill » Mon Feb 06, 2017 10:34 am

Dreams are free! And can be uplifting! Goals enable us - even when we don't meet them. I really hope you meet yours tonight and you are sleeping soundly while I type.

Ironically, I have been on rls drugs since about 2004 also but for me pramipexole worked so well that I refused to face up to the fact that my dose had increased 34 fold in the years I was taking it. I was finally pulled up by my GP and was constrained to enter the murky world of post augmentation rls, armed only with the enormous collection of handbags and shoes that my pramipexole fueled shopping mania had equipped me with.


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