Page 4 of 6

Re: Infusion Update

Posted: Fri Feb 17, 2017 9:20 pm
by debbluebird
You might need a month off the Methadone, but I don't know for sure. I don't seem to have the iron issue (ferritin), once I got it up to the right level it has stayed there. I still have it checked periodically.

Re: Infusion Update

Posted: Fri Feb 17, 2017 9:53 pm
by ViewsAskew
If I wanted to completely get it out of my system, I would need a month off. My goal is to stop tolerance. What i don't know if if I must completely withdraw or if a reduction is enough. I think a reduction may be enough because of how I used it for years. For about 7 years, I had no tolerance - by switching it every 2-3 days - so 2 days of methadone, two days of pramipexole, etc. But, I didn't get the benefit of reducing side effects by using the drugs together. The best sleep and the least side effects are gained by using them at the same time.

Another option would be to see if Dr B would switch me to a different opioid now that I am using very little. I might do OK with a shorter acting one...

Re: Infusion Update

Posted: Sat Feb 18, 2017 4:18 pm
by QyX
I would try a different opioid. Because of the very long half life of Methadone and the fact that it is also stored in the fatty layer getting Methadone out of your systems can take several months.

And unfortunately you will most likely have tolerance issues, too. So you would need to stop or reduce the dose just at a point were everything is going well, you have the perfect sleep but your opioid dose is only going upwards. This is what happened to me.

But Morphine and and its derivates (Oxycodone, Hydromorphone, Hydrocodone, ...) are opioids with less side effects compared to Methadone. No cardial side effects and they are all less stimulating, Morphine might even be working as sleeping aid, at least for a couple of weeks.

I would jump at the first chance to get away from Methadone.

But be aware: with shorter half life you will run into withdraw symptoms much faster but as long as you have low tolerance the opioids mentioned above are great.

Re: Infusion Update

Posted: Sun Feb 19, 2017 8:18 am
by ViewsAskew
I managed tolerance with methadone for almost 7 years by alternating - so I know it can be done. Prior to alternating (using it 2 days, taking off 2 days), I had tolerance every 6-10 months.

I know you really don't like methadone, but I've tried all but two opioids and I have preferred methadone to all of them. My experience is very different from yours, QyX. Now that I the ferritin is high enough (I hope) to allow me to use a DA for at least a couple months, and that I have cut back so much on what I need, the issues I had with the other opoids might be manageable.

Re: Infusion Update

Posted: Mon Feb 20, 2017 3:03 am
by peanut1
I wanted to get an iron infusion and my doctor said no. In my last reading the ferratin was at 110. curious to know what your ferratin level was for the doctor to let you have an infusion. I may need to change doctors and see someone like Dr. B as my neuro also will not let me have an infusion and I got allergic to the prescription iron.

Re: Infusion Update

Posted: Mon Feb 20, 2017 8:36 am
by ViewsAskew
Hi peanut1 - Originally my ferritin was 16, then 8. I used oral iron to get it to the high 30s, but couldn't get it higher. My first infusion only helped me for a week or so - I wasn't even sure it helped. My regular doc did the wrong test, so I'm not sure how high it was when it worked; it was around 170 a few weeks after it stopped working, so I know it needs to be higher than 170. Within a few months, it was already below 100.

The next time I had one it lasted longer, but I only was able to reduce meds by about 40% for about 4-6 weeks, then I slowly increased them back to prior levels. It took over a year to completely fade out.

This last one - iron was back below 100 - maybe in the 70s, can't remember. I guess it wasn't hard to convince a doc to try it given mine was so low and that I augmented in a week or two - hallmarks of low ferritin. If I had 110, I'm not sure what I'd do. It's clear, I think, that some people truly do need a higher level than 100. I do. Mine, I think, is likely closer to 200-250. When it falls below that, I have a bit of help, but not much. And, at 100, I might as well have it be 10.

I seem to recall hearing Dr. Allen or Earley saying that at Johns Hopkins they are finding some people need 100, some at 150, some even higher. They identify the ferritin level when it starts working (if it does), then again when it stops. They try to keep the person in that range. Not sure what they do when this range is quite high, such as over 300. (Or could be Dr. B told me that...or I am making it up - I do not remember my source, so am unsure if this is true - I don't trust my memory as I used to.)

Re: Infusion Update

Posted: Fri Mar 03, 2017 3:58 am
by ViewsAskew

Last week, I started needing more meds. Seemed like the very beginning of augmentation. I can't tell for sure at this point and I didn't want to keep taking it to find out. I figured I would stop the pramipexole immediately and see what happened. Ouch - the first two days were miserable, which makes me a bit concerned it was augmentation, but also could be that the methadone hadn't built up yet. The fourth wasn't too bad and I finally slept in the daytime. I am going to stay off ten days, then not sure, but likely a week or two off the methadone...again. But, it hasn't been too long and I've been on only 5 mg, so hoping stopping won't be much trouble.

The main concern for me is how I rotate these drugs. The best is to take both together. But, because of tolerance and augmentation, I have to take breaks from both. That means some amount of hell/misery. Mostly is means that I still am unlikely to be able to work full time.

Am thinking the following may be the best option:
11-12 days combined
3 days increasing methadone/decreasing pramipexole
5 days methadone only
3 days decreasing methadone/increasing pramipexole
5 days pramipexole only

That gives me a total of 20 days taking both and five only on one, then five on the other. The question is whether 5 days off of each is enough to prevent tolerance and augmentation. The other option is to transition weekly...and I don't really like that much.

I wonder if it would work to have Sun through Thurs be combined, then each weekend alternate between the two. I'd have no transition - which might suck - and while that is 8 days off of the combo, it is really only four days off one and four off the other. Because the breaks are frequent, it might work. But, two days every two week off of methadone doesn't seem enough.

Re: Infusion Update

Posted: Fri Mar 03, 2017 4:47 am
by badnights
Does it seem to you that no amount of iron can prevent augmentation in some people? (eg. you). And if you hadn't been using pramipexole, the infusion would have been more of a success? Maybe it's time to try one of the opioids that didn't work before, while the effects of the infusion linger - alternate with methadone?

P.S. Your source for the ferritin info of post before last may have been me. I've posted that info a few times. I got my understanding of it from Early and OConnor's webinar on iron. You didn't listen to it at the time it was held, but maybe you have since then - eg. before you got your first infusion.

Re: Infusion Update

Posted: Fri Mar 03, 2017 5:14 am
by ViewsAskew
To be clear, I am not sure if it is augmentation. That is part of the problem, but I wasn't going to wait until I was sure because of how hard it is to overcome. It just could have been a few days strung together that were worse than normal, hormones, of who knows what.

But, very interesting question. I have NO idea. I only know of a handful of people who augmented as quickly as I did. Could be that iron is only part of the reason why. Could be that while my ferritin is high, I still don't have enough in my brain to prevent augmentation, but that the increase is enough to resolve symptoms by a certain percentage. No clue.

I would like to try another opioid, but Dr B didn't want to. His logic was that if they didn't work the first time (and the primary issue was side effects, a secondary issue that I needed more than I should have), why try again? I may try to talk with him about it again.

Makes sense that I picked up the ferritin info from you on here. I don't think I did watch it...

Re: Infusion Update

Posted: Fri Mar 03, 2017 7:03 am
by badnights
Could be that iron is only part of the reason why. Could be that while my ferritin is high, I still don't have enough in my brain to prevent augmentation

Either or both. I suspect iron is not the whole story behind augmentation. I am not sure why I suspect this, other than that nothing is so simple. The connection between iron and augmentation is observed but remains unexplained. Iron deficiency in rodents can cause decreased dopamine receptor D2 density, and thereby a relative dominance of the D1 receptor subtype, which imbalance is thought to be involved in augmentation, but other things can lead to a similar imbalance, for example, long-term activation of one dopamine receptor subtype can increase the density of a receptor subtype that has opposite actions. So taking a DA that activates D2 might eventually lead to a D1 increase and augmentation, regardless of iron levels in or out of the brain. Rambling.

Re: Infusion Update

Posted: Fri Mar 03, 2017 5:00 pm
by legsbestill
Festina lente, Ann. I can see why you hesitate between the options you set out for alternating. The first sounds great in that you get a good long run on both meds and also a reasonable break from each but the weekly regime is straightforward, theoretically easier to operate and if it worked, could be a great option. Would it be worth running it past Dr. B? Whatever you do, you blaze a trail for others to follow. Thanks for keeping us posted.

Re: Infusion Update

Posted: Sat Mar 04, 2017 12:24 am
by yawny
I agree with legsbestill, Ann, you're definitely blazing a trail for us all. Thank you for sharing everything with all of us.

Regarding iron...Makes me wonder if there's a different way to get iron into the brain/body? I know very little about medical things so bear with me...could you trickle iron in through an implanted pump? Or do your own injections like people do with Vitamin B shots?....Or, is another country doing anything that we aren't? It seems Germany is always doing interesting things in medicine (and they make awesome vacuum cleaners).

Re: Infusion Update

Posted: Sat Mar 04, 2017 11:44 am
by ViewsAskew
yawny - the only thing I know of is not related to RLS or even iron. But, 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 am way too tired to remember, but they either made it permeable or designed something to pass through. I imagine a Google search would fine it.

One was related to cancer, I believe, but I remember thinking, AHA! This would solve our problem!

legsbestill, I did email Dr B - no response. But I am having email issues, so... The last time we talked, he just said to be careful and not stay on pramipexole too long. I think a max of 30 days is . My issue is related to the breaks - the longer I take either of them, the longer the break needs to be. The longer the break is, the more lost time I have. For example, this week is a lost week - sleeping 12 hours, but none of it until 5 or 6 AM, brain fog for hours after I get up, wide awake at know the drill. When I take the break from methadone next, even if i don't have withdrawal (it wasn't that long ago that I stopped it for almost 2 months), I will sleep horribly, getting between 3-5 hours of broken sleep.

So, maybe even shorter breaks are better. Not like I did originally - I switched every 2 days and never took them together, then switched daily. That was really hard on my mood and I went through continual minor withdrawal every other day. But maybe like this:

Sun, Mon, Tues, Weds,Thurs- combined, reducing P while increasing M
Fr, Sa - Methadone only
Sun, Mon, Tues, Wed - combined but reducing M each day while increasing P
Thurs, Fr, Sa - P only

That would have me on pramipexole for 12 days with a two day break and on methadone for 11 days with 3 day break. I could make both a 3 day break...but I really would like a couple 5 day weeks. Guess it depends on whether I give up on being able to work. And, yes, i get how annoying this is to change like this all the time.

Beth's suggestion is the only other add a different opioid.

Re: Infusion Update

Posted: Sun Mar 05, 2017 11:47 pm
For ViewsAskew---
I really feel for you, trying and trying to find the correct and BEST schedule with your Meds,! and it seems that, for many of us, things only go well for a short time and then everything needs to be re-evaluated. You were such a dear when I reached out to begin my search for support, and to begin coming to the Discussion Board. I have a great deal of empathy for you! May you find the rest and the help you search for--- maybe Dr. B will get back to you soon with good advice. I'm sending my prayers your way. Today I am having a great day (not only because it's my Birthday, but because my Meds are truly at the correct level for me, FOR NOW). Wishing you a good night!

Re: Infusion Update

Posted: Mon Mar 06, 2017 6:21 am
by ViewsAskew
Well - Happy Birthday to Sleepy Angel! Sounds as if it was wonderful. Any day meds are working is wonderful!

It does seem that we go through a lot of ups and downs. Maybe that isn't true for most of us, just that those of us who seek out help are the ones that have more ongoing issues, so it seems as if everyone is this way. It makes me feel better to believe that millions of those with RLS are happily snoozing at will, have no RLS issues sleeping with someone in the same bed, and go to see musicals late on Saturday night without squirming in their seats. :-)

For now, am going to try the above schedule and see how it works. It does mean I have to really pay attention to what I am taking and when, but it 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!