Regional Meeting Report: Augmentation and Ferritin

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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Regional Meeting Report: Augmentation and Ferritin

Postby ViewsAskew » Tue Jul 22, 2008 12:13 am

One of the things I wanted to make sure I shared from Dr Picchietti was about research related to augmentation and iron.

In studying augmentation, they have found that those with the lowest ferritin levels tend to be the ones who augment. He didn't say what the study results were (and I have heard this before), but that it was a strong relationship. He also didn't say if you augmented before and then got your iron increased if you would not augment again....

In a private chat, he recommended that anyone who augmented get that ferritin up - period - specifically telling me to do so. His wife has RLS, and his kids, so he knows how hard it can be to do. He tested it out on himself just to see; it took him many months to raise it to a reasonable level (I think he said he started at about thirty something and got up to eighty something).

He also said that after you increase it to a reasonable amount (I can't remember if he said a specific number), if gets much harder to increase. The body says, "Hey! We've got enough iron already" so it dumps it out instead of adding it to the stores, so a lower percentage is added. He said persistence is key. He himself took 2 ferrous sulfate tabs morning and night for months to find out how long it would take - it was a many months and he doesn't have RLS. He said that the slow Fe seems to work better for some of us and recommended trying it if there were problems with the regular formula.

Related to getting transfusions, he said the studies at Johns Hopkins seem to show that one type of iron (iron dextran sp?)worked better than another and is much cheaper. But, that type of iron also seems to have more problems associated with it. Insurance companies will only cover the procedure if you have low blood iron - not ferritin - and it's quite expensive. He said is was unlikely to find someone willing to do this for us. He also talked of another reason it was hard to get, but I didn't write it down and I've forgotten it (sorry!).

If rubyslippers or drummin4him remember more (or anyone I didn't specifically meet who posts here), please add to (or correct) anything I've written.
Ann - Take what you need, leave the rest

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Jitterlegs
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Postby Jitterlegs » Tue Jul 22, 2008 12:42 am

Very interesting, thanks for the info! I would LOVE an iron infusion to get it over with already! I am finding iron very hard to take--either I forget or it is too close to consuming dairy products and then forget again! :roll: Not to mention the number it does on my stomach! :cry: If my ferritin isn't up after 3 months of this I am going to push for an iron infusion. I have now started slo-fe at night in combination with the vitron-c only because I bought so much of the vitron-c I want to use it up! I'm hoping slo-fe to be easier on the stomach.

ViewsAskew
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Postby ViewsAskew » Tue Jul 22, 2008 1:24 am

He said that we were probably not going to ever get infusions easily. Now, some people have had them, but they are few and far between. It was a combo of the risks and that the only medical reason (so far) is because your CBC shows very low hemoglobin.

My best friend was down to 7. something. The doctor wasn't sure how she could keep from passing out because her iron was so low...yet they gave her tablets, not an infusion.

Sounds like these are not going to be easy for us to get...

If anyone figures out how, please let the rest of us know!
Ann - Take what you need, leave the rest



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SquirmingSusan
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Postby SquirmingSusan » Tue Jul 22, 2008 6:19 am

That's interesting that the people with the lowest ferritin are most likely to augment. That sure was the case for me. Mine was about 8 when I augmented, and my doctor told me that was in the normal range. :roll: I tried iron pills for about 6 months and got the ferritin up to a whopping 12.

I asked my doctor for iron infusions; he wrote a prescription for them, and I got 4 of them. No problems with insurance whatsoever, and my insurance is NOT that great. So it can be done.

Now my current doctor doesn't believe that it's possible for women to get their ferritin over 50, and isn't willing to even work with me on that. Oh well, I'm starting with a new neurologist who was recommended to me by someone in my area, who belongs to this list and contacted me individually. Apparently she's a new neurologist and is very willing to work with people and learn about their problems. I sure hope so.

At one point in my quest to improve my iron levels, I was taking a highly absorbable, really expensive, high dosage chelated iron. But I read an article somewhere about how taking PPIs (for GERD or heartburn) blocks absorption of iron. No wonder it was impossible for me to raise my iron with iron pills.

Anyway, I was able to get the infusions without any hassle at all. And this information totally explains the wicked, rapid augmentation I had with the Requip.
Last edited by SquirmingSusan on Wed Jul 23, 2008 12:10 am, edited 1 time in total.
Susan

ViewsAskew
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Postby ViewsAskew » Tue Jul 22, 2008 8:16 pm

Funny, I don't know what mine was when I augmented, but about a year later I finally knew to have it tested...it was 8 also. And, like Susan, I was told it wasn't low.

Unlike Susan, no doc, including RLS specialists, have been willing to discuss a transfusion. I was told I'd need to go the Johns Hopkins and enroll in the trial...
Ann - Take what you need, leave the rest



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Sleepyred
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infusion

Postby Sleepyred » Wed Jul 30, 2008 1:25 pm

After 2 iron infusions, my doc (sleep) and hematologist agree that my ferritin must be over 150 for my RLS to be under control. Even with this, I have to take .125 mirapex at night (down from .5 of mirapex and 1mg of klonopin). So far, insurance has covered it - I took iron for 3 years and completely tore up my stomach. I can tell a huge difference when my ferritin level drops and it is time for another infusion. Which they have approved it it goes below 100.

I am female...approaching the "age" and have lighter cycles - which I'm assuming helps as well.?

ViewsAskew
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Postby ViewsAskew » Wed Jul 30, 2008 6:00 pm

That is great to hear, especially as the doctor at this event was confident that no one was going to give infusions for low ferritin and insurance wouldn't cover it. Both you and Susan have gotten them. I imagine that there still are insurance companies and doctors that won't consider it, but nice to know that some do.
Ann - Take what you need, leave the rest



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Aiken
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Postby Aiken » Thu Jul 31, 2008 1:07 am

I think what you need, more than to show that your ferritin is low, is to show that you cannot absorb enough orally. Most insurance companies will do anything they can to say that there's another way for you to do something. If you can show the other ways don't work, you'd probably have an easier time getting an insurance company to cover it, as it's clearly a medical issue and not a dietary one. Likewise, I suspect a doctor would be more interested in the idea for the same reasons.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

djohnso55
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Postby djohnso55 » Wed Jan 14, 2009 2:33 am

Very interesting reading. I have been on Requip 2 mg for about 2 months after being diagnosed with RLS by my family dr. My ferritin level is 8 although my hgb and hct are normal. Is this usually the case? I have an appointment with a sleep neurologist in March (that is the earliest he can see me) since I told the family dr. I am still not sleeping well. I take Lunesta 3 mg also. It seemed like my jumpy legs had eased, but still bad sleep. Now it seems that I notice my legs jumping a little before bed. I hope that it isnt't the augmentation starting. I am going to see if I can possibley get in earlier to sleep dr. I have never been aware of my leg movements at night, I just have never slept well. The sleep study revealed the RLS.

ViewsAskew
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Postby ViewsAskew » Wed Jan 14, 2009 7:21 am

Many of us don't know we're moving at night - just that we're tired all the time. I knew I was awake a lot. At the worst, right before I went for treatment, I was keeping a log of each time I awakened. On a bad night it was over 30 times. That's nuts. I went to a urologist first, thinking it was a bladder problem, lol. I mean, when you wake up, you assume it's because you have to use the bathroom, right?

Your ferritin situation is totally normal for an RLSer. Mine was 8, too. It's been as high as 35, but I haven't ever gotten it higher or to stay up there. Iron therapy can be hard.
Ann - Take what you need, leave the rest



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djohnso55
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Postby djohnso55 » Wed Jan 14, 2009 6:07 pm

Thankyou for the reply.


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