My pharma diary

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.
QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Wed Feb 22, 2017 2:53 am

Now I can't wait to take the ferrous bisglycinate. The package should arrive somewhere during the day.

Honestly: what you write sounds good for you. I just have a hard time believing that I will achieve the same results as you.

Okay but also I never would have expected that Melatonin can have such drastic effects. All the people I talked to were sceptical and just couldn't believe what Melatonin was doing to me.

You do give me some hope but I have so much experience with drugs and I know what I'm taking at the moment... all these hyper potent opioids ...

At least I found out that when I reduce Oxycodon and add some Morphine for it my symptoms improve and I am able to stop Methylphenidate.

Today is the first night in days I feel somehow tired. I am just anxious to lay down because normally symptoms will come back within seconds. And I already can feel that my legs are not okay.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: My pharma diary

Postby Noreserve » Wed Feb 22, 2017 6:27 am

Well I'm not worried about the iron working for you [DELETED] I know people on here will disagree but RLS is little more than anemia of the brain that generally only rears its ugly head at night. Always exceptions but that's the general pattern. You are well armed against this condition. So after you take the iron and you lay back and relax I would love it if you would start to solve the mystery. Why can't our brains store a little iron for a rainy day... I mean night. And why only at night. And what other ways are there to up- regulate our receptors, au natural of course. Not to be rude but you owe me if for nothing else than mentioning about the Melatonin to you. :| plus you always said how you wanted to help all of us with this condition. Time to move over to the non-prescription side and get acquainted with Mother Nature. She has our backs.

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Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: My pharma diary

Postby Noreserve » Wed Feb 22, 2017 8:33 am

[DELETED] Also there seems to be little point in taking a second iron pill in same evening unless u take two at same time. Due to a little hormone called hepcidin researchers are thinking that slightly larger doses taken every other day (at least for anemia) will provide better absorption and raise body iron stores better. I don't much care about my body iron stores but I do try to put 24 hours between doses.

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QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Feb 23, 2017 12:11 am

Okay so the iron arrived but I have to pick it up at some packing station. I will go there later this night. Because of severe RLS symptoms last night I was sleeping during midday and afternoon. My alarm was making a sound every 10 mins but then in late afternoon I put it on 90 minutes. That I sleep during the day happens to me a lot when I have RLS at night and it get's even worse when I don't have an appointment in the early morning.

At least I found out that taking Oxycodone alone is not helping much. Today I woke in the evening and even had RLS symptoms in my arms. And then taking Oxycodone first made everything worse. I do know for some years that symptoms may get worse in first 30 minutes but I generally can't get that kind of relief I got from Morphine now I am getting from Oxycodone. So today I took 5 mg of Methylphenidate as a rescue medication. RLS in the arms is so ugly and I haven't had symptoms there for more then 4 years. I just wanted it to go away fast.

So late last night I found out that mixing Oxycodone with Morphine (1:1 or 2:1) almost gives me complete relief like Morphine alone did in December and early January. And there is no need to raise the dose. I always thought Oxycodone is the magic drug because when RLS symptoms didn't go away by just taking Morphine adding 10-30 mg Oxycodone always helped. My thought then was Oxycodone alone should do it. That's what I reported to my doctor and his is how ended up with this big Oxycodone prescription which would be almost useless if I still hadn't all this Morphine...

@norserve: so how should I take the iron when I take my drugs like this:

6 am: 8 mg of long acting 24 hour Hydromorphone. This pill normally get's me thru the day. I have a demand for more opiods between 4 and 6 p.m.

Between 4 and 6 p.m. is also the time were my evening RLS symptoms start. It's kinda impossible not to take opioids at some point early evening but for me a normal time to go sleeping would be around 10 p.m. and I have the most severe RLS between 2 and 6 a.m.

This is why I take the main opioid dose at 10 p.m. and this is also the time I would prefer to take the iron. Making the iron the first RLS med in the evening is kinda impossible because I take meds the hole day.

Carbamazepine in the morning, early evening and late night

Hydromorphone in the early morning and then opioids at least at some point in the afternoon and late night ... but in the past weeks I was also taking opioids somewhere between the afternoon and the late night.

Now that this combination of Oxycodone and Morphine offers this great relief from RLS symptoms is news to me. Just taking Oxycodone alone leefs a lot of symptoms I can't take which pressures me to take Methylphenidate. But with Morphine & Oxycodone together there is no need to take Methylphenidate in the evening. So how to go from there? I am under a bit of pressure to reduce opioids. Right now I take a dose that equals 250 mg of Morphine total and my goal would be to get that down to 150 mg again. And my hope is that the iron somehow can help here.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: My pharma diary

Postby Noreserve » Thu Feb 23, 2017 2:00 am

Qyx can u gut it out by day? [DELETED] I assume u don't have hemochromatosis? [DELETED]

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QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Feb 23, 2017 2:45 am

RLS related pain normally only responds to opioids. If I would take drugs like Ibuprofen on a regular basis I would destroy my kidneys and stomach.

So what I will do is to reduce my opioid dose in the late afternoon to get a "stronger" feeling for my legs, then take the iron and wait how it goes from there.

At the moment Methylphenidate is the most potent drug against RLS at my disposal but I have a beed feeling using it and even a little bit to much can completely destroy my ability to sleep because of its stimulating properties.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: My pharma diary

Postby Noreserve » Thu Feb 23, 2017 3:19 am

[DELETED] Then the idea is [THE] brain and receptors of all kinds will once again kick in and produce all of those feel good hormones on their own. It won't take long. [DELETED] Nothing ventured nothing gained. I'm tired of that cliche but it seems appropriate.

Statements framed as medical advice have been deleted by the moderators. Refer to here for our policy in that regard and to here for our usage policies.

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Feb 23, 2017 3:37 pm

In general opioids is something you can reduce fast if you are not addicted.

IF the iron really works I should be able to split the dose within 7 to 14 days, reaching a dose below 100 mg of Morphine would be ideal but right now it is all about being able to sleep again during the night.

This day I stayed awaked and did not fall asleep.

Now it all depends on the question if I will be able to manage my RLS symptoms this night.

I have upcoming exams in some weeks and I am only able to study in the library.

So I need to find some way to get up in the early morning. This is really important to me.

Today will be the first day I am gonna take the iron. Somehow this hole day was messed up with RLS symptoms in the late morning and around noon until I finally took some Methylphenidate.

With the opioids: I took much more in the past, almost 600 mg of Morphine together with antipsychotics (Seroquel, Truxal) and it didn't scare me. Now my hole situation is much better but it scares me.

Honestly I believe opioids always will be some part of my life.

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Feb 23, 2017 4:11 pm

Noreserve wrote:Qyx can u gut it out by day? Meaning do as little sitting as possible so u don't have RLS. .... Don't think of yourself as an RLS victim but rather as a warrior which I think we all know u are. Once it's evening and maybe around 8pm take two iron Capsules. I assume u don't have hemochromatosis? .


There are some issues I have:

I have to study for the next exams. It's a lot of work and this forces me to sit much more then I like.

When I was misdiagnosed with bipolar disorder, I thought of myself as a warrior. I put all the energy I had into dealing with this problems and became a board member in the biggest german bipolar society. You could see me on TV, I was doing speeches all for a disorder I finally didn't have ... because what I have is RLS and all this bipolar meds I took were just causing the symptoms of bipolar disorder.

This experience really rattled me. And back then I wasn't studying medicine full time. All I want is to function.

No, I do not have hemochromatosis :-)

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Thu Feb 23, 2017 9:06 pm

So at 9:30 p.m. German time I took 1 capsule of ferrous bisglycinate. The product I use contains 319 mg ferrous bisglycinate equals 50 mg of iron.

After a couple of minutes I felt relaxed and a bit tired but most likely it is a placebo effect, right?

During the day I took relatively little opioids. Now I had to take otherwise things will escalate.

What's imporant for me is the question if I will be able to sleep during the night?

I wasn't in the past two weeks.

legsbestill
Posts: 340
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: My pharma diary

Postby legsbestill » Thu Feb 23, 2017 9:50 pm

Good luck, QyX. I hope it works.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: My pharma diary

Postby Noreserve » Thu Feb 23, 2017 10:39 pm

Why are parts of my posts being deleted? Sad but expected.

ViewsAskew
Moderator
Posts: 14721
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: My pharma diary

Postby ViewsAskew » Thu Feb 23, 2017 10:43 pm

Please read your private messages, Noreserve.
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.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: My pharma diary

Postby Noreserve » Thu Feb 23, 2017 10:54 pm

Too busy helping people for this nonsense. Qxy I know u are sleeping well right now and will continue to do so. Be well always. I'm deleting my account, I refuse to have my posts censored as though it was child p-ofraphy.

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: My pharma diary

Postby QyX » Sun Feb 26, 2017 12:50 am

So here I have some news: the results of my blood test came and it turns out that I have like zero Vitamin D (25 - Hydroxy Vitamin D). It was almost not detectable. So I got a prescription for Vitamin D, one capsule containing 20.000 I.E of Vitamin D. My Ferritine was okay, just right in the middle.

If the iron is helping I don't know and the Vitamin D situation completely caught my attention.

Severe Vitamin D deficiency can cause all kind of symptoms and it looks like that this is a problem I am suffering since I started taking Carbamazepine.

More when I am not so tired. I just wanted to report this. My severe Vitamin D problem was shocking news to me because it is so extreme.


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