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.
badnights
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Re: Infusion Update

Postby badnights » Fri Sep 08, 2017 11:28 pm

I imagine I too would have a hard time remembering to take it early enough if I had just gone back to it after time away.

I have a problem with fluctuating intensity. The amount of medication I take works well for a few weeks - or months - and then things start getting worse but it's a while before I think to increase my dose to handle it. (Prescriptions are frustrating - I need that darn stash, otherwise I can't manage the fluctuations.)

I've been denying the need to increase lately, all the past week at least, but I gave up last night and took enough to sleep. I also took the day off work, and had enough meds in me to actually sleep in a bit. I have been getting up at a normal time and going to bed at an almost-normal time, but not sleeping - rising with WED 15 min after lying down, walking about, eating!, trying again - until a few hours later, then sleeping a bit, then starting the whole darn thing again, only this time with the knowledge that I have to get up for work soon.

What's the point of reducing meds if you're not getting a decent quality of life? I have to remind myself of this.

I split my meds to take in 3 batches as well, but the division is more like 50%, 40%, 10%. It used to be 30-60-10 but I was losing my evenings to symptoms - just being useless and in grief for a few hours until the next dose kicked in. It's such a balancing act, because if only I could stand the evenings, I could take part of it later and have enough in me to last til morning. I finally had to admit, I just need more total meds. Darn.
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 » Sun Sep 10, 2017 12:07 am

badnights wrote:I imagine I too would have a hard time remembering to take it early enough if I had just gone back to it after time away.

I have a problem with fluctuating intensity. The amount of medication I take works well for a few weeks - or months - and then things start getting worse but it's a while before I think to increase my dose to handle it. (Prescriptions are frustrating - I need that darn stash, otherwise I can't manage the fluctuations.)

I've been denying the need to increase lately, all the past week at least, but I gave up last night and took enough to sleep. I also took the day off work, and had enough meds in me to actually sleep in a bit. I have been getting up at a normal time and going to bed at an almost-normal time, but not sleeping - rising with WED 15 min after lying down, walking about, eating!, trying again - until a few hours later, then sleeping a bit, then starting the whole darn thing again, only this time with the knowledge that I have to get up for work soon.

What's the point of reducing meds if you're not getting a decent quality of life? I have to remind myself of this.

I split my meds to take in 3 batches as well, but the division is more like 50%, 40%, 10%. It used to be 30-60-10 but I was losing my evenings to symptoms - just being useless and in grief for a few hours until the next dose kicked in. It's such a balancing act, because if only I could stand the evenings, I could take part of it later and have enough in me to last til morning. I finally had to admit, I just need more total meds. Darn.


The fluctuating intensity is what can appear to be augmentation. Since I am trying to catch it quickly, I may not be augmenting...but I would rather switch for a few weeks than miss real augmentation and have it take over my life!

I have gone, at times, up to 10 months without increasing. And, lost part of that ten months to increased symptoms. It does not help a thing to keep the meds low and be miserable.
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 » Sun Sep 10, 2017 6:32 am

Since I wrote my last reply, I rethought what I was doing. My evening symptoms are no longer as bad as when I changed my dosing scheme to have to the biggest dose first, so I cut it in half and now take the other half at bedtime. Worked great last night, and so far tonight. I'm glad you made me think of that!

And I agree about the augmentation. I was fairly certain I had augmented on levo-carb extended release about 5 years ago, so I quit it. I started it up again a couple years later, 2 nights a week when I break from Lyrica. It hasn't caused any obvious problems, but if I take regular LC I get rebound 4 hours later, and I had one night when took LC-extended and two LCs in the same night, and the whole next day and night was a misery - a warning sign? Or a random fluctuation? I assumed the worst, and now I hardly ever use the regular LC.

I am lucky that my doctor gave me a 1mg - per -day prescription for instant hydromorph contin to replace it.
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 » Mon Nov 13, 2017 2:13 am

I had my annual visit with Dr. B on Friday. He said he didn't want to check ferritin until things were bad again, so I am guessing I will slowly just need more over time. It is a year since the infusion and 9 months since it started working. When I received it, I needed 35 mg of methadone every 24 hours. After the infusion kicked in, I needed 12.5 to 15, IIRC. Today I need 25.

I have my best days when I split the dose about 50/50 with pramipexole. When I took only pramipexole, I was taking 1.5 .25 mg tablets per day at the worst and about .125 after the infusion. Together, now, I take 12.5 methadone and .125 pramipexole. Lately it seems as if I need a bit more....but I have been taking the pramipexole for 3 weeks because I knew I would run out of methadone if I used more of it. I couldn't get another script until I came back to CA. Now I have the script and the pharmacy said they have to order it. This is how my hell started last year about this time. When I went in to get it, they said it didn't come, so they would reorder and I should check back in 3 days. NO pharmacy would tell me over the phone if it was in stock, so I had to drive from pharmacy to pharmacy...at least in Chicago they have been providing it for over ten years, so they stock it for me. Hopefully one of them will do that for me here.

I also had asthma, so he gave me an inhaler - I knew I was wheezing mildly and my allergies have been out of control.

He wants to go through the other opioids again to see if we can find a substitute that works well enough that I can use it alone without the pramipexole. Methadone alone, for me, is too sedating and causes too much memory loss, especially as the ferritin declines and I need more. Cannot do the pramipexole alone because of the crazy side effects. The worse is how often I awaken - as often as if I had untreated PLMs.

But, maybe the two together is as good as it gets. I just wish I didn't have to stop the pramipexole regularly. Because without that, it really is about perfect for me. I do not oversleep as I do on methadone, I stay asleep unlike when on pramipexole, and so on.

I am going to wait a few weeks to try the oxy - that is our first try. I seem to recall that my main issue with it was that it simply didn't last long enough so that I would get 2-3 hours sleep, have to get up and wander around for an hour while the new dose started to work, then would get 2-3 hours more, etc. My guess is that it might be perfect if I took 5 mg methadone and the remainder as oxy, but he doesn't like to combine them. I seem to recall that in one of the Johns Hopkins videos that one of the docs - Earley, maybe - talked about how combining worked really well. Would likely have to find a pain doc who would do that and given the climate, am guessing that will not happen!
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
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Re: Infusion Update

Postby stjohnh » Mon Nov 13, 2017 2:52 am

ViewsAskew wrote:I had my annual visit with Dr. B on Friday. He said he didn't want to check ferritin until things were bad again, so I am guessing I will slowly just need more over time. It is a year since the infusion and 9 months since it started working.


Ann,
Does it usually take 3 months for the effects of an iron infusion to be apparent?
Blessings,
Holland

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Mon Nov 13, 2017 4:47 am

stjohnh wrote:
ViewsAskew wrote:I had my annual visit with Dr. B on Friday. He said he didn't want to check ferritin until things were bad again, so I am guessing I will slowly just need more over time. It is a year since the infusion and 9 months since it started working.


Ann,
Does it usually take 3 months for the effects of an iron infusion to be apparent?


No - my first and second showed results at 3.5 weeks, which is on the early side, but in the range of 3-8 weeks. Dr. B said he has never seen any resulrts after week 8.

When it happened (the beginning post in this thread) I was surprised. I had the infusion and starting watching for results at week 3. At 4 weeks I was disappointed, but hopeful. By week 6, I gave up and stopped paying attention since it happened before week 4 the two prior times. It was by accident that I found out, actually. I had taken about half my normal dose and fell asleep - then slept through the night. I reduced some more and it kept working. Of course, it could have happened at week 7 or 8 and I missed it and didn't notice until week 11.
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 » Fri Nov 17, 2017 6:20 am

He wants to go through the other opioids again to see if we can find a substitute that works well enough that I can use it alone without the pramipexole. Methadone alone, for me, is too sedating and causes too much memory loss, especially as the ferritin declines and I need more. Cannot do the pramipexole alone because of the crazy side effects. The worse is how often I awaken - as often as if I had untreated PLMs.

But, maybe the two together is as good as it gets
You know how we change. Something that had certain effects before might be different now. Worth trying them all again!

I think hydromorph contin is under-used generally. Is he giving you oxycontin or oxycodone? If the latter, no way will it last long enough. If oxycodone, I have a feeling it doesn't last as long as hydromorph contin, though I can't say why I feel that...

Probably I don't have a good reason.. I had oxycontin for my first knee surgery, but that very surgery is what sent my WED/RLS into overdrive, so I've never used oxycontin specifically for WED. I was prescribed oxycodone for WED at one point, but my symptoms were extreme and the dose was minimal, so it had no effect whatsoever.
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 » Sat Nov 18, 2017 4:57 am

Beth - I had the same thought. One of the issues last time was that I didn't get enough coverage and was up every 3 hours.l I was thinking that the perfect would likely be to take 5 mg methadone and then the remainder of a short acting opioid. Sadly, Dr B is not much into combining.

I swear there was a seminar from .... ???? - one of the docs at Johns Hopkins? - that suggested combing was a good option. But, I couldn't find it again when I wanted it.

Which takes me back to my idea from several years ago. We NEED an index post in each thread that links to such things. It is just too easy to lose them.
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 Nov 18, 2017 6:59 am

Oh - forgot the other part. I am relatively sure he doesn't use the extended versions...but I want to talk to him about that. I did use hydromorphone, but the regular, way back whenever. The odd thing is that almost all of them gave me horrible headaches - from trigger points. I get tense and clench my jaw so the muscles in my neck/shoulders go crazy. I tried some hydromorphone of couple months ago that I had left over from a few years ago and I did not have the headaches as I did before.

Guess we will see!
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 Nov 23, 2017 5:17 am

Gee I don't see how he can imagine that short-acting would do the trick. It needs to last longer than 4 hours! Otherwise we get up in 4 hrs, take another pill, wait 15 min for it to kick in, and yay if nothing goes wrong we have 8 hours of broken sleep and never get to sleep in. Boo hiss. I would not be a functional human being (which I guess I barely am, but hey ) if I did not have the coverage of the contin version.

I can't remember if combining opioids was endorsed by Earley in the opioid webinar. https://www.rls.org/member-portal/webinars almost at the bottom, Feb 2016 "What is the Role of Opiates in RLS?" There are two dealing with augmentation that I haven't seen, maybe it was mentioned there. One is by Dr B so not that one. The other is much older, one of the first webinars.
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


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