Search found 21 matches

by 2restless
Fri Jan 03, 2020 6:39 pm
Forum: Prescription Medications
Topic: Infusion #3
Replies: 31
Views: 2153

Re: Infusion #3

We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to f...
by 2restless
Thu Jan 02, 2020 7:20 pm
Forum: Prescription Medications
Topic: IV iron therapy
Replies: 3
Views: 429

Re: IV iron therapy

Wow, that is so encouraging, and I am so glad it has worked for you! Yes, when my husband was sleeping he was a new man. It is so hard to see him suffering so again. Just got his ferritin back and it was 345. That surprised me as 4 weeks ago it was 550. So he has dropped faster than I thought. Perha...
by 2restless
Thu Jan 02, 2020 2:00 pm
Forum: Prescription Medications
Topic: IV iron therapy
Replies: 3
Views: 429

IV iron therapy

I want to share my husband's experience with IV iron. He received low molecular weight iron infusion on October 8. His ferritin level at that time was 245. He had received a previous iron infusion 16 months earlier, which did nothing, other than bumping up his ferritin. I think they gave him the wro...
by 2restless
Wed Jul 31, 2019 6:46 pm
Forum: Prescription Medications
Topic: RLS from 12mn to 7AM on Methadone
Replies: 15
Views: 563

Re: RLS from 12mn to 7AM on Methadone

Yes, they wanted to use Feraheme. I'm not in favor of it. Still investigating options, and waiting to see if secondary insurance will pay anything. Thanks for all your help. I sent the IRLSSG paper to his physician.
by 2restless
Fri Jul 26, 2019 1:54 pm
Forum: Prescription Medications
Topic: RLS from 12mn to 7AM on Methadone
Replies: 15
Views: 563

Re: RLS from 12mn to 7AM on Methadone

I've never heard of Lyrica triggering RLS symptoms. Do you have some research I could read to investigate this? Anyone else ever hear of this. He has been on 150 mg bid now for about 18 months. I don't know if it ever helped or not - very hard to tell.
by 2restless
Mon Jul 22, 2019 11:27 pm
Forum: Prescription Medications
Topic: RLS from 12mn to 7AM on Methadone
Replies: 15
Views: 563

Re: RLS from 12mn to 7AM on Methadone

I am trying to get an infusion of carboxy-maltose for my husband. His doctor is fine with it and he falls into the requirements fro infusions as far as his transferrin saturations and ferritin levels are (<300 and < 45%). The problem is twofold: first, the infusion center doesn't have it but has som...
by 2restless
Fri Jul 12, 2019 1:48 am
Forum: Prescription Medications
Topic: RLS from 12mn to 7AM on Methadone
Replies: 15
Views: 563

Re: RLS from 12mn to 7AM on Methadone

I think you may be on onto something. It has been about year since he had his iron infusions. I can't remember what type he had, but will find out when we see his doc next week. I do remember that they researched what was best with RLS. One that they wanted to do was not available. I mentioned anoth...
by 2restless
Wed Jul 10, 2019 2:46 pm
Forum: Prescription Medications
Topic: RLS from 12mn to 7AM on Methadone
Replies: 15
Views: 563

Re: RLS from 12mn to 7AM on Methadone

He has stopped it for a total of 3 weeks in the past. When he restarted the pramipexole he restarted at 0.125 mg, and sometimes will take 0.25 mg Takes it maybe 3-4xweek,but it doesn't seem to be helping much. We don't know if it is making things worse or better. The last 3 days he has had a total o...
by 2restless
Sun Jun 30, 2019 9:07 pm
Forum: Prescription Medications
Topic: RLS from 12mn to 7AM on Methadone
Replies: 15
Views: 563

Re: RLS from 12mn to 7AM on Methadone

No, its not a urinary problem. His restless legs are waking him.
by 2restless
Sun Jun 30, 2019 3:04 pm
Forum: Prescription Medications
Topic: RLS from 12mn to 7AM on Methadone
Replies: 15
Views: 563

RLS from 12mn to 7AM on Methadone

My husband is on Methadone, which has worked wonders. His RLS during the day is so much better, he can read again, sit and watch movies. He is on 20 mg/day, also takes 150mg Lyrica twice a day, and on some nights 0.125 to 0.25 mg pramipexole. (he was on 3 mg at one time, augmented terribly). The pro...
by 2restless
Sun Nov 11, 2018 3:08 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Kratom and insomnia
Replies: 8
Views: 622

Re: Kratom and insomnia

Thank you all for your responses. He's had a terrible week - an hour of sleep here and there, no more than 3 hours/night. Mostly due to RLS symptoms, but several nights due to insomnia. I will try the Methadone earlier in the day, and perhaps increase the dose. He's been taking 20 mg, but his dr has...
by 2restless
Sat Nov 10, 2018 5:27 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Kratom and insomnia
Replies: 8
Views: 622

Kratom and insomnia

My husband is on methadone, which has helped the severity of his symptoms, but the RLS still causes a fair amount of sleeplessness, and on nights when he doesn't have the restlessness, he has insomnia from the Methadone. Would kratom help him to sleep on those nights? Where do you get it?
by 2restless
Sat Nov 10, 2018 5:05 pm
Forum: Prescription Medications
Topic: methadone not working
Replies: 18
Views: 1015

Re: methadone not working

QyX, My husband has had RLS for 40 years. He is 70 in a few weeks. We have tried sinemet, clonazepam, pergolide, requip, pramipexole, Horizant, gabapentin, Lyrica, tramadol, oxycodone. Additionally we have tried vitamins, magnesium, calcium, gluten free diets, dry needling by physical therapy, refle...
by 2restless
Mon Oct 15, 2018 1:37 pm
Forum: Prescription Medications
Topic: methadone not working
Replies: 18
Views: 1015

Re: methadone not working

This sounds like a plan. Let me see if I understand you correctly. You cut your Methadone dose down by half, and then take the pramipexole with it, for about 5 days (which can vary,depending on the person), then stop the pramipexole and go back to Methadone alone again for a time. When you go back t...
by 2restless
Mon Oct 15, 2018 12:01 am
Forum: Prescription Medications
Topic: methadone not working
Replies: 18
Views: 1015

methadone not working

My husband has severe refractory RLS, like many of you. We've been thru everything. In June we started methadone - he initially needed 10 mg tid, but was able to cut down to 10 mg twice a day within a month. However, now the RLS is back. The pattern at night is 1-2 hours of sleep, awake for 1/2 - 2 ...

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