I have had four iron infusions in the last 2 years. 10 weeks ago I received Injectafer 1000 mg with so-so results. I had seen a hematologist at my neurologist/Sleep specialist’s urging out of his concern for my out of whack lab numbers. The hematologist was not concerned. I gave my sleep, specialist a copy of the mayo protocol and asked to please follow it, including the lab work. We proceeded with another infusion and my labs just came back as follows: under a heading of “iron & TIBC”: TIBC low 252, UIBC low 86, iron high 166, iron saturation high 66. Then a separate heading “transferrin saturation” shows iron high at 164, trans sat high 61%, transferrin low 191. Serum ferritin is 874, down from 1,200 in December.
My specialists are all unconcerned and my insurance has been paying for part of the infusions and all of the lab. The effect on my RLS (which is in arms/legs/body) has been somewhat beneficial and I feel like I’m simmering more of the time and flailing around less on the iron. Not sure if it’s worth continuing infusions. Next one scheduled for June. 18 months of oral iron didn’t raise my numbers at all, which is why we went to the Infusions.
Interestingly, I had a spinal tap in September and all limb mvmt stopped for 8 or 9 days. Tap results showed some kind of early myelin issue but the docs don’t seem to think it’s significant or necessarily indicates MS but it’s now on the “maybe list”.
Neuro/sleep has since done some nerve blocks in that area with mixed results — stops the RLS for a few days when he hits the right spot. My RLS also is VERY positional to my left lower back. If I stay away/off of that area, it doesn’t kick off until 2 a.m. as opposed to starting at 4 p.m. if I dare to sit down. I stand up all evening most nights. We’ve tried ice, heat, creams, salt soaks, hot tub. The RLS is also sensory — even certain fabrics touching my legs sets it off. It reminds me of autistic students I had when I was a teacher. This is all a drastic change from the one or two nights a week of RLS I had 20 years ago, pre-spinal surgeries. Both of my daughters have RLS and I’m deeply concerned for them.
For completeness I guess I should list the meds that have already been tried in the last several years. I augmented on pramipexole and this ensued for RLS, PLMD, insomnia…pramipexole, gabapentin, Horizant 300 and 600, ambien, ambien cr, Xanax, Valium, doxepin, requip, phentermine, temazepam, trazodone, atarax, propranolol,lidocaine 30% cream, compounded lidocaine and bupivicaine cream, Quviviq (only thing that worked somewhat but unaffordable for me and I don’t qualify for aid), Belsomra, amitriptyline, melatonin, slow Fe, lyrica, Clonidine, Halcion, Mobic, zofran,phenergan, Tramadol, prednisone, fentanyl patches, oxycodone, lunesta, hydrocodone, Dilaudid….
And I’m now on a trial of VIMPAT/lacosamide 50 twice a day that I’m one week into with very slight improvement. The Sleep neurologist plans to increase the dose and, if it stops my legs from moving, start me on a trial of sonata for sleep.
Plus four iron infusions (Ferrlecit and Venifer did nothing for RLS and made me quite ill). After that, insurance finally let me try Injectafer which helped enough that I’ll keep taking it but it didn’t totally resolve the RLS and the habituated insomnia rages on.
I can tell from this forum, that many of these drugs were not given a proper timing or trial. Also, they’ve had me circle back and do two trials on many of these Sleep drugs during times when my RLS has been more under control. It made no difference.
i’ve been off caffeine,, all the usual triggers, for years. My sleep hygiene is good. We black out our entire house at night, literally hanging black shades over the windows. I’m out of ideas and the anxiety. This has all caused, I think makes my RLS worse.
The only thing we have found that stops my legs from moving, though only lasts an hour, is cannabis. All of my doctors are aware and endorse this as the only thing we can find that helps at this point. Prescription strength, edibles and tinctures did nothing. Only smoking. It affects the RLS. It’s dramatically helpful.
Thoughts ? Advice? I have a brain MRI this week. I have seen the following specialists: two ortho, sleep Neurology, sleep pulmonologist, hematology, Endocrine, internist/PCP, autoimmune and neurosurgery for past spinal fusion, recently a plain neurologist and all she had to add was sending me to pain mgmt about a spinal stimulator or nerve ablation. That’s next week.
I’ve had a spinal tap, PET scan, dozens of lab visits, sleep studies, venous studies of the legs and more. Everything is a little off but no big A Ha ! diagnosis. Doctors have questioned if I’m drinking well water or could it be something in the brand new house I’m breathing… I can’t chase my tail anymore. I’m worn out from this.
Nothing has worked and I feel like I’d be better off on a clean, keto diet, stress-free, and keeping my brain away from all of these chemicals. It’s really taking a toll and I’m pretty much homebound and not able to drive at this point.
It seems like a reasonable plan to let neurology titrate the lacosamide up (which the doc said to expect) and if it’s not working by my March visit, I’ll ask him about the dipyridamole. I have PSVT so hope that doesn’t disqualify me. He’s willing to give me anything even if backed by small studies. Thank you. 
Iron Infusion - Ireland
Iron Infusions - the type of iron used may matter.
Iron Infusion 
Iron Infusion 
