RLS, iron infusions, and ferritin levels.

[2restless]

My husband had an iron infusion in October 2019. He slept great for 4 months, and then started having more symptoms at night and during the day. We checked a ferritin level and it was 346, down from 550 after the infusion. He then started sleeping well again -7hours/night, but then again got worse. Ferritin in February 497. Now he is having no sleep at all every other night, with symptoms continuing into the day. Sometimes he can nap for 45 minutes. The following night he sleeps 5-6 hours, then the cycle repeats. Rechecked his ferritin again last week, now at 485! I know ferritin levels are an acute phase reactant, so with any stress/inflammation/sickness in the body it will rise. So I am wondering, how do we now determine if he needs another infusion? Are there any other tests that can be done. I know the guidelines say no iron infusion until ferritin is less than 300, but it seems to me the more sleep deprived you are the more it will rise. ANy ideas? Has anyone else talked to Dr B about this? By the way, he is on 20 mg of Methadone, and has only been taking 0.125 mg of Mirapex.

[stjohnh]

Well, unfortunately there are no currently available iron tests that will help. It MAY be possible that one of the RLS specialists would order another iron infusion, but even then it may be an uphill battle.

You didn't say exactly why he is not sleeping. If it is urge-to-move keeping him awake maybe his methadone dose needs to be adjusted. If urge-to-move is adequately controlled and he is still waking up, medical marijuana (THC) helps lots of people. Gabapentin/Lyrica/Horizant may also help sleep, but have more side effects.

[2restless]

Thank you Holland. He is not sleeping because of need to move legs
symptoms - he even has it during the day and at times can hardly sit. If he tries to lie down the restless legs are back almost immediately. We increased his Methadone to 30mg/day, so far no benefit. He smokes pot and at times that helps. Sits in the hot tub. Has been on Lyrica, Horizant, gabapentin but we quit all of them because they did nothing. Is it possible he could augmentation on so little Mirapax?

[stjohnh]

It is possible he is augmenting on 0.125mg mirapex, but that is a low dose and it is not very likely. If he has augmented previously on mirapex then it is much more likely.

[badnights]

Look for other changes that happened around the time his symptoms got worse the second time.

How long has he been taking 0.125 of Mirapex? His infusion has worn off, maybe augmentation is exactly what's happening.

Dr. B. asks for iron, % transferrin saturation, TIBC, and ferritin. It still can't tell him what's in the cerebrospinal fluid, but might help him interpret the high ferritin.

I also got an infusion, my first one, last fall. It took a month to kick in, then had beneficial effects (quite pronounced) for 3 or 4 months, after which the benefits have been tapering off.

[ViewsAskew]

Having been through this myself, no question that inflammation can be involved and skew the results. Sadly, the only test that truly tests the iron is a spinal tap (I am having symptoms and took my sleep meds, so double check everything I say!) and they are dangerous and not done for this.

Because I have had multiple infusions, I am positive when my symptoms are related to the lowered ferritin. I recently had some inflammation (cause unknown) and my ferritin was in the high 200s. I convinced the doc to try - and my symptoms dropped by 50%. The inflammation appeared to have left about that time as my iron was 280ish right before it, and 6 or 8 weeks later it was on 319 and I had 1000 mg of iron.

hope some of this makes sense. Am going to go wander around as typing is not my friend at the moment.

[2restless]

Look for other changes that happened around the time his symptoms got worse the second time.

How long has he been taking 0.125 of Mirapex? His infusion has worn off, maybe augmentation is exactly what's happening.

Dr. B. asks for iron, % transferrin saturation, TIBC, and ferritin. It still can't tell him what's in the cerebrospinal fluid, but might help him interpret the high ferritin.

I also got an infusion, my first one, last fall. It took a month to kick in, then had beneficial effects (quite pronounced) for 3 or 4 months, after which the benefits have been tapering off.

Badnights - have you gotten your ferritin checked again or had a second infusion? I was told by someone that the subsequent infusions usually last quite a bit longer.

[2restless]

Thank you all - this is so hard, i never know whether to increase the Mirapex, or stop it for a week which essentially results in almost no sleep at all for a week. It's hell.

[stjohnh]

I've had 2 infusions. First lasted 22 weeks before I started having significant urge to move symptoms. I'm now at 40 weeks from my second infusion and am just starting to have mild urge to move. I figure at least another month or two before I will need another infusion.

[Oozz]

Can I ask who I can reach out to regarding infusions? Although my ferritin is 270, I am very interested in pursuing this therapy.

[stjohnh]

Oozz,
Sorry to bring bad news, but your chance of convincing most doctors that an iron infusion is indicated and safe is nearly zero. Most IV iron infusions in the USA are given by hematologists, generally with not very good understanding of iron metabolism, and generally with nearly no knowledge of RLS. Even people who clearly meet the International RLS Study group recommendations (ie ferritin <100 with appropriate transferrin saturation) frequently have trouble getting iron infusions. The problem is that doctors and labs generally consider any blood ferritin over 20 as normal. Too much iron is indeed bad, but very few doctors recognize that blood ferritin has very little to do with brain iron levels.

If you think that you are 100% healthy, except for RLS, your ferritin could be artifactually high. Perhaps a repeat ferritin will bring you closer to the magic 100 level. When you do the blood test: Be sure you are fasting at least 10 hours, no iron tablets for at least a week before test, no red meat for 48 hours before test, test in early morning (not late morning or afternoon). Those tips will help you get a more accurate result.

[Oozz]

I have to ask, if it’s so rare, how come you and several others on the board were able to get it done despite having 200+ ferritin?

What hoops did you have to go through or others in order to get the hematologist comfortable enough to do it?

[stjohnh]

1. Get blood test. Ferritin must be <100 and Transferrin Saturation< 45%
2. Give my primary doc copy of the IRLSSG paper and go over salient points with her, convince her that I am a candidate fitting the recommendations.
3. Primary doc gives me referral to hematologist.
4. Do #2. above with hematologist.
5. Hematologist orders IV Iron infusions.

Main problem is that the docs see my ferritin of 80, say "it is normal, you don't need iron." I then have to review iron metabolism with the docs and persuade them that while a blood ferritin of 80 is "normal" it does NOT mean that my BRAIN iron level is normal. Once the doc is convinced that a "normal" blood ferritin does not mean brain iron is normal, I was pretty much home free. The BIg problem you will have is the elevated ferritin. Makes docs nervous that you might get too much iron and die.

[ViewsAskew]

I have to ask, if it’s so rare, how come you and several others on the board were able to get it done despite having 200+ ferritin?

What hoops did you have to go through or others in order to get the hematologist comfortable enough to do it?

I think several of us go to the same doctor. I know three of us who have seen Dr. Buchfuhrer, for example, and he is a fan of them, so it makes it easier. Before I moved to So. Cal., I tried to get an infusion (with very low ferritin - it was 8 originally) and could not. So, having him in my corner was a big part of it.

When I saw the first hematologist, he was skeptical. I whipped out my phone, called Dr. B's office, they put Dr. B. on the phone, and he convinced the hematologist to do it. This last time, I bookmarked specific parts of the research paper on it. When the new hematologist was skeptical, I'd find the marked spot and hand him my phone. He agreed but was still a bit skeptical. He is now on board because it worked! So, another doctor trained!

[Oozz]

that makes me feel a lot better. Although I’m in the east coast, I can fly out west easy enough (when everything calms down). Thank you for sharing.

I wonder how dr. Earley feels about this treatment... anyone ask him about it?