Infusion #3

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.
stjohnh
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Re: Infusion #3

Postby stjohnh » Wed Sep 11, 2019 4:23 am

redshoes wrote:Due to my total lack of medical background, I have only the vaguest idea why slow release iron products will increase the amount of iron that can be taken up by the body during the infusion process, or why slow-release is safer than the faster release formulations. ...


I think the idea is that due to the blood-brain barrier, coupled with faulty blood-brain barrier iron transport (genetic/RLS), that only if the ferritin is above a certain level (say 400 for example) will the iron seep across the blood brain barrier, but this only occurs slowly. If this is the mechanism, then fast release IV iron, which provides VERY high ferritin, but only for a short spell, will only have a day or few days in which the ferritin stays above 400 (in this hypothetical example). So the full dose of iron is in the blood stream and available to all organs in the body-- but only a small amount of it gets into the brain.

The slow release IV iron provides high ferritins, but only moderately high (say 500-1000), but for many weeks. So that instead of only a day or two when the ferritin is above 400, there are at least several weeks in which the ferritin is above that level, meaning much more will seep into the brain from the blood.

RLS is a heterogeneous disease, with multiple genes involved (further complicated by epigentic factors), so that person to person variability is very high. This means that some have mild symptoms, some severe. Some respond very well to IV iron (I am one of the lucky ones) but a significant minority don't have any improvement with IV iron at all. The reason for this is unknown currently.
Blessings,
Holland

yawny
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Re: Infusion #3

Postby yawny » Wed Sep 11, 2019 6:05 pm

I noticed that Holland had recent IV iron infusions and sent him some questions about it. He kindly answered my million questions. We both recognized the discussion might be beneficial on the main forum so here are the highlights...

ME: I’m wondering if an iron infusion is helpful for cases like mine where my RLS is mild but my PLMD/PLMs is significant enough to wake me throughout the night? Also, someone mentioned a Ferritin level of 85 not being helped by infusion and I’m wondering if I read that right. If I’m able to increase my Ferritin level through oral iron, then is an infusion not an option? My symptoms didn’t improve when I went from the 40s up to 100 and so I stopped and my number is slowly lowering and is now in the 60s.

HOLLAND: IV iron infusions are recommended for any case of RLS of any severity that does not respond to oral iron in which the ferritin is less than 100. There are a few other requirements, but those are almost always not a problem. That said, RLS is a heterogeneous disease, lots of person to person variability, and response to any RLS med, including iron, is not guaranteed. While most people with RLS improve with IV iron, a substantial minority do not. Lack of response to oral iron does not predict response to IV Iron, so the fact that you got your ferritin to 100 on oral iron has no bearing on the likelihood of responding to IV Iron. IV iron usually gets the ferritin to 500 or a 1000.

ME: I’m wondering if the human body recognizes oral and IV irons differentIy, or if it’s just a matter of very high amounts of iron (IV iron) having a better chance of reaching the brain? Do you know if it’s important to do the full infusion as recommended? I’m concerned about my ferritin levels being so high and am wondering if people ever do a lesser amount? I’m having a hard time understanding how this is safe, in light of all of the warnings about taking iron and high ferritin levels. Also, when speaking to my doctor about all this...is the IRLSSG task force a reputable enough group that I can reference them as providing new guidelines?

HOLLAND: In any case, the problem with oral iron is that absorption in the gut is blocked by a series of transport mechanisms. This is to prevent excessive iron in the body. It is rare for a person to be able to get their ferritin above 100 with oral iron alone. Most of those who have a ferritin of over 100 have some inflammatory problem as well, perhaps not even recognized.

The brain of RLS patients needs more iron than it is getting. The reason the iron is not getting from the blood to the brain is currently unknown, but mostly thought to be due to a genetic problem with transport mechanism that is supposed to move the iron from the blood across the blood-brain barrier and into the brain. It is thought that if the blood iron levels are high enough, then the iron will just seep across the blood brain barrier without having to use the faulty iron transport system that RLS patients have. This ordinarily means a ferritin of several 100. There is no way to get iron levels this high in the blood with oral iron. My ferritin 8 weeks after IV Iron was over 700. It probably stayed over 300 for a couple more months. The danger from high iron levels is that over many years, the iron will get deposited in the tissues, causing damage (hemochromatosis). IV iron will not cause this unless the iron levels are already very high, which is why the recommendations limit IV iron to people below a certain ferritin and who have a relatively low %transferrin saturation.

*****

QUESTION for the group: Does anyone know how best to present this idea to one’s doctor so the doctor takes the request seriously?

Rustsmith
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Re: Infusion #3

Postby Rustsmith » Wed Sep 11, 2019 7:40 pm

yawny, one of the questions that you asked that Holland did not touch on was if the IRLSSG is a reputable group. The answer is an emphatic Yes! The IRLSSG is a group that is made up of the RLS experts and researchers from both the US and Europe. The committee's documents are the consensus findings of the most knowledgeable RLS experts in the world.

In answer to your last question, the best approach to use for presenting this to your own doctor depends upon your doctor's personality as well as the relationship that the two of you have. If (s)he is the sort who readily accepts new information, simply hand him/her a copy of the IRLSSG document with sections highlighted and explain that this is a "consensus document" that was prepared by the world's leading RLS experts. If your doctor is not one who is receptive to input provided by a patient, then all I can do is wish you luck and suggest that you be prepared for any sort of negative response.
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.

stjohnh
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Re: Infusion #3

Postby stjohnh » Wed Sep 11, 2019 7:45 pm

Rustsmith wrote:...
In answer to your last question, the best approach to use for presenting this to your own doctor depends upon your doctor's personality as well as the relationship that the two of you have. If (s)he is the sort who readily accepts new information, simply hand him/her a copy of the IRLSSG document with sections highlighted and explain that this is a "consensus document" that was prepared by the world's leading RLS experts....response.


To emphasize what Steve says: HAND the document to the DOCTOR at one of your visits. Do NOT email, leave the paper at the front desk, give the paper to a nurse or assistant, or give the doc a pile of documents. ONE document is the correct number.
Blessings,
Holland

ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Wed Sep 11, 2019 8:16 pm

I can emphatically say that handing it TO the doctor is the best option. I emailed it, too, but no one gave it to him (imagine that, lol). So, I had it ready. He was reluctant, but I had the salient part identified and suggested he start there. He literally went from skeptical to OK in about 30 seconds of reading.
Ann - Take what you need, leave the rest

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ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Wed Sep 11, 2019 8:21 pm

As an update, I had my first infusion yesterday. The clinic is an oncology clinic and the area for the infusions has about 15 chairs. When I went, about ten were occupied...by people getting chemotherapy and their partners or children. I chatted with two women, one of whom had breast cancer. They were chatty and one was crocheting (I was knitting), so we had an instant conversation starter.

After they left, I could see a couple down the row. Guessing late 60s. After he was finished, he had to sit for 15 minutes. I happened to look over at that time. He was softly caressing her hand, she was reading something. The look on his face said everything - the love he had for her, the worry about the possible loss of his life, the remembrances of their lives together. If I had a camera, it truly was one of those images that is iconic, but I cannot imagine taking that photo and intruding. It was so personal.

Definitely not what I was expecting.
Ann - Take what you need, leave the rest



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SquirmingSusan
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Re: Infusion #3

Postby SquirmingSusan » Tue Oct 08, 2019 2:28 am

I had my second iron infusion of this series on Friday. They are giving me Ferrlecit, 125 mg. at a time, in monthly infusions. I get my ferritin level rechecked in November, after the 3rd infusion. My RLS got much better within a couple weeks after the first infusion. I think I'm one of the few people with RLS related to low iron, whose RLS only goes crazy at super low levels of iron. Of course I always have severe, augmented RLS, but once the ferritin drops below 10 or so it gets really bad.

I have no idea why my neuro picked this form of iron, unless he had his staff check into insurance coverage and what I would have to pay. Turns out this variety of infusion only costs me $125 per dose after the insurance discount. Much better than the several thousand $$ for the Injectafer last round.
Susan

ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Tue Oct 08, 2019 10:35 pm

I had my last one about a week ago.
Ann - Take what you need, leave the rest



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ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Sat Oct 19, 2019 11:12 pm

I deliberately reduced meds early this week. A few months ago, when I stopped pramipexole for a few weeks, I needed 30-35 mg of methadone to cover symptoms. That dropped to 25-30 at the end when the methadone had built up some. When I started the pramipexole again, I was taking .25 mg pramipexole and 15-20 mg methadone.

I added clonidine for when I drink coffee, as caffeine increases my blood pressure. With the clonidine, I reduced from the methadone to 12.5 about 3/4 of the time, depending on the day, and sometimes needing 15. That was pretty awesome. I have to wonder if I took a bit more of it if that would allow me to reduce more.

This week, I reduced the methadone to a constant 12.5 and the pramipexole first to .1875 for two nights, then down to .125 for two nights. I went back to .1875 on the fifth night, but am going to try to reduce it again tonight and see if I can lower it at least 1/2 the time.

I am very pleased. If I could get the methadone down to 10 with the pramipexole to .125 I'd be THRILLED! The last infusion was just over 2 weeks ago, so I suppose that is still a possibility.
Ann - Take what you need, leave the rest



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debbluebird
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Re: Infusion #3

Postby debbluebird » Sun Oct 20, 2019 9:12 pm

So glad the infusions are working.

redshoes
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Re: Infusion #3

Postby redshoes » Mon Oct 21, 2019 3:56 am

I am updating my status after two IV iron infusions a week apart, ~500 mg each time, in early September, last month. The Elsevier/Allen et al paper suggested that a patient might not see any difference until many weeks after an infusion. I believe stjohnh mentioned 6 to 8 weeks. (I’m doing this post from memory, so I forget which version of iron I got, but it was one of the slow-release ones.)

I’m about 5 or 6 weeks post-infusion and I believe I am seeing a reduction in RLS symptom.

Gabapentin: A week or so ago, I reduced my nighttime gabapentin from 900 mg down to 600 mg. Now I’m getting better quality sleep—remembering dreams again.
Pramipexole Rx .5 mg: For the last three nights, I have reduced pramipexole dosage by 25% (going slowly on that one).

Have not been to the lab yet to do the post-infusion ferritin/iron panel—I figured it would make more sense to have the bloodwork done closer in time before my follow-up appointment with the hematologist.

Fingers crossed!

redshoes
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Re: Infusion #3

Postby redshoes » Mon Oct 21, 2019 10:58 am

PS I am also experiencing mild headache overnight and in the morning. I take nothing for this (except a cup of coffee).

PPS Right knee joint has become slightly sore, for no apparent cause (except aging!).

stjohnh
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Re: Infusion #3

Postby stjohnh » Mon Oct 21, 2019 3:27 pm

redshoes wrote:I am updating my status after two IV iron infusions a week apart, ~500 mg each time, in early September, last month. The Elsevier/Allen et al paper suggested that a patient might not see any difference until many weeks after an infusion. I believe stjohnh mentioned 6 to 8 weeks. (I’m doing this post from memory, so I forget which version of iron I got, but it was one of the slow-release ones.)

I’m about 5 or 6 weeks post-infusion and I believe I am seeing a reduction in RLS symptom.

...
Fingers crossed!


The guidelines paper actually says "at least 4-6 weeks." My experience, after 2 separate sets of infusions, is that minor improvements in symptoms (some not commonly related to RLS) continue for a few months after the infusions. It makes me think that (not really unexpectedly) I have iron metabolism dysfunction of some type affecting other parts of my nervous system as well. Shouldn't really be a surprise since iron is required for EVERY cell in your body to function properly.
Blessings,
Holland

ViewsAskew
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Re: Infusion #3

Postby ViewsAskew » Mon Oct 21, 2019 6:29 pm

I seesawed back and forth over the weekend with pramipexole. .125 on Saturday, then I did that again on Sunday, but felt symptoms starting as I was ending my last row of knitting before bed. I decided not to chance it and immediately took a quarter of a tablet. I had no problem falling to sleep, so maybe didn't really need it...but I slept exceptionally well, so maybe it was a good thing.
Ann - Take what you need, leave the rest



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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.


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