lab work 8 weeks post iron infusion - advice?

[SleeplessinNC]

I had an infusion of Injectafer 750 mg on April 29 and had labs drawn exactly 8 weeks later per advice or information on this lifeline Now I would truly appreciate hearing some fellow RLS sufferers thoughts and advice on iron infusion and medications.

I’m currently still symptomatic but much improved on lacosamide /Vimpat 150 twice a day. level was 7.7 right in the middle. I also take gabapentin 300 twice a day for other nerve damage from spinal fusion. And marijuana is my last resort for the middle of the night but it doesn’t last long.

I don’t think the iron infusions should be continued. I’m scheduled for another in August. TIBC 277, UIBC 20, iron 257, iron saturation 93. Transferrin saturation: iron 257, transferrin saturation 85%, transferrin 216, ferritin 1,098. I double-checked all of those numbers.

I see the neurologist tomorrow and I am considering simply trying methadone, which I have been resisting, in hopes of stopping everything else, simplifying my regime, and getting some sleep. Insomnia is the major issue. Thoughts?

The collective support on this forum is getting me through and I truly appreciate it — I refer to it as “my RLS support group”. Thank you.

[Joolsg]

As your RLS is most likely caused by spinal damage, I doubt iron infusions will make any difference.

Methadone or Buprenorphine would control the RLS but, for some, they can cause insomnia. Do you already have insomnia or is it RLS keeping you awake. If it is RLS that's waking you still, methadone or Buprenorphine would control the RLS, so you wouldn't be awakened by the sensations and the need to move.

The gabapentin will help with any opioid induced 'wakefulness'. And cannabis.

[SueJohnson]

Wow! All your numbers are very high. I remember you saw a hemotologist in February when your TSAT was high and he wasn't concerned. I would definitely see him again as iron overload can be dangerous to your health. Definitely no infusion in August.

Methadone is a good idea and should help you.

[SleeplessinNC in reply to SueJohnson]

Iron infusions are on hold Forever as far as I’m concerned. I think I WANTED them to help more than they actually did. Not worth the iron overload risk. You’re spot on with my doc.

[Rayme]

I understand reluctance to go to methadone. I felt the same way but I'm glad I tried it as it's helped ease severe RL. For the most part 7.5mg works for the night with one or two mild breakthroughs that I can walk of within a few minutes and then go back to sleep. So mostly 6 to 8 hrs sleep. Very occassionally I have insomnia when I go to bed but it's only for an hour or two. I hope you will find a good solution to ease your RL.

[SleeplessinNC]

Update and Methadone Questions: I asked my neurologist for methadone today. He’s actually been encouraging me in that direction as drug after drug fails, my legs keep dancing, and insomnia has taken a toll.

He started me with 2 mg methadone 30 pills to start tomorrow along with continuing lacosamide and gabapentin for now and said I’ll have to titrate up to find the magic number. He is comfortable going up to 20 or 30 mg.

Does that sound like I’m on the right track? I am fearful - probably stigma /fear of addiction. Do I take it only at bedtime? Do you just take more during the night if RLS breaks through? How much more?

Anyone out there actually get insomnia from methadone?

Has it stopped working on anyone? I worry this is the next Pramipexole nightmare for me — for many of us.

Someone commented on dental problems - does it ruin your teeth?

My doc agrees that I’m at the point of trying to regain some quality of life. Thank you for your input.

[Mongolia2020]

hi SleeplessinNC

I have titrated to 10 mg of methadone over 4-5 months- it takes about a week for the meth level to accumulate in your body and reach “ steady state”. I found if I increased the dose too quickly I couldn’t cope with the side effects.

I just took it a day at a time. I got very constipated and it took me a wee while to get on top of that. I now take 2 laxol every morning and two at night, as well as tinned pears ( in juice, no sugar added), and a couple of l prunes or figs. I had to use OTC enemas a couple of times so make sure you have some laxatives available. My constipation is now well managed.

Methadone made me very sleepy during the day also to start with, and had a little sleep every morning and every night. That may also have been my body trying to catch up on severe sleep deprivation. But I no longer need to do that.

Because methadone has a long half-life, I only take it once a day - I now eat dinner around 6 -6:30pm, have methadone around 7 -7:30, and go to bed around 8:30. I am usly asleep in minutes, but wake after around an hour. Then I do something like read or play word games ( in bed), and drift off back to sleep.

Until I reached 10 mg I was getting RLS symptoms waking me during the night, which I would walk off for a while or do squats.

Now on 10 mg I am getting 7-9 hours sleep every night. I do still wake a couple of times a night but my RLS is mild. I find if I read or play a word game for a while I can go back to sleep.

I do feel a bit of brain fog and a loss of drive and motivation. But I can sleep. And that is bliss! And for me the trade off is worth it.

I hope this helps.

[RiversW]

Hi SleeplessinNC

I am assuming by your name that you live in North Carolina. If so, I wonder if you would mind sharing what city and the name of your doctor. I am originally from Raleigh and there is a chance I may live there again. If so, I will need a doctor willing to prescribe Buprenorphine. I have been taking it for four months and sleep well almost every night.

Thanks so much, Rivers

[SleeplessinNC in reply to RiversW]

Dr. Peterson Giallanza, sleep neurology, in Huntersville near Charlotte NC. He’s extremely patient and understanding. And always loads me up with options and articles. Best of luck.

[RiversW in reply to SleeplessinNC]

Thanks so much for writing. I really appreciate it. Rivers

[Nlthomp in reply to RiversW]

Hi RiversW. As a former RLS sufferer for many years, I live in Durham and absolutely love my neurologist. He’s actually an RLS specialist, who worked with Dr. Earley as an intern. His name is Dr. Andrew Spector, a Duke neurologist in Durham. He is also happy to do video appointments for NC residents. Dr. Spector often prescribes Buprenorphine for his RLS patients. If you relocate to NC be sure to look him up. You won’t be disappointed.

[RiversW]

Great, in fact the triangle is where I would likely live if i move to NC. Have many friends and family there, especially Chapel Hill. Thanks so much for the information.

[Sappington]

Hi. I find that the Gabapentin gives short relief to RLS so I use it to augment the Pramipexole which is the medic ation most given here in Australia. I do find that the Gabapentin does give some relief as well as general osteo-arthritis pain. I just wish that someone could find a treqawtment for RLS that worled with no side effects. Think I shall be waiting a long time for that to happen.