Search found 16 matches

by redshoes
Tue May 18, 2021 10:44 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Reading results of Iron Bloodwork
Replies: 23
Views: 14649

Re: Reading results of Iron Bloodwork

PS:
redshoes here again.

My neurologist was agreeable to iron infusions bc I had augmented on ropinirole; Neupro patch gave me bad rashes; so the next route was methadone, which I understand is a procedural headache for the neurologist's office.
by redshoes
Tue May 18, 2021 10:13 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Reading results of Iron Bloodwork
Replies: 23
Views: 14649

Re: Reading results of Iron Bloodwork

Hi jacwillheal, I also had my iron infusions ordered by a hemotologist, after referral by my neurologist. (Ferritin level was about 70, as I recall, maybe less. But as Holland says, blood ferritin level is a poor metric for brain iron. ) I followed Holland's advice, and PRINTED the Elsevier paper he...
by redshoes
Sat Sep 26, 2020 1:56 am
Forum: Prescription Medications
Topic: Success!!! Iron infusions ordered!
Replies: 12
Views: 1528

Re: Success!!! Iron infusions ordered!

Excellent result. I too have had success getting iron infusions, due to the help and specific advice I have received here, esp from Holland. The iron infusions were immediately beneficial in reducing my symptoms. Good luck!
by redshoes
Sun Feb 23, 2020 11:17 pm
Forum: Augmentation
Topic: Pramipexole augmentation
Replies: 32
Views: 20945

Re: Pramipexole augmentation

Hi pianomom, After over 10 years on ropinirole, I augmented. I was prescribed .5 mg pramipexole. Last fall, I had the IV iron infusion treatment. Armed with the IV infusion study that Holland StJohn linked to, I asked my RLS neurologist for the infusion, and she agreed. The neurologist referred me t...
by redshoes
Mon Oct 21, 2019 10:58 am
Forum: Prescription Medications
Topic: Infusion #3
Replies: 33
Views: 5038

Re: Infusion #3

PS I am also experiencing mild headache overnight and in the morning. I take nothing for this (except a cup of coffee).

PPS Right knee joint has become slightly sore, for no apparent cause (except aging!).
by redshoes
Mon Oct 21, 2019 3:56 am
Forum: Prescription Medications
Topic: Infusion #3
Replies: 33
Views: 5038

Re: Infusion #3

I am updating my status after two IV iron infusions a week apart, ~500 mg each time, in early September, last month. The Elsevier/Allen et al paper suggested that a patient might not see any difference until many weeks after an infusion. I believe stjohnh mentioned 6 to 8 weeks. (I’m doing this post...
by redshoes
Wed Sep 11, 2019 2:45 am
Forum: Prescription Medications
Topic: Infusion #3
Replies: 33
Views: 5038

Re: Infusion #3

redshoes here. After the Neupro 4 mg gave me rashes, my neurologist put me on .5mg mirapex+gabapentin AND referred me to hematologist. Latest labs showed my ferritin at 69 (up from 40-something after 6 months of oral iron). So hematologist agreed to order IV iron, 2 infusions, a week apart. Had the ...
by redshoes
Sat Aug 31, 2019 2:18 pm
Forum: Prescription Medications
Topic: Effectiveness of Neupro patch
Replies: 15
Views: 1468

Re: Effectiveness of Neupro patch

Update re Neupro and IV iron Visit with neurologist was positive. She took me off Neupro and substituted .5 mg Mirapex + 900 mg gabapentin, which is working at present. She also referred me to hematologist & hematologist ordered an iron panel blood test. If ferritin level is <75, hematologist will o...
by redshoes
Wed Aug 21, 2019 10:07 pm
Forum: Prescription Medications
Topic: Effectiveness of Neupro patch
Replies: 15
Views: 1468

Re: Effectiveness of Neupro patch

Be sure and highlight the first sentence of section 5.3.4 on page 34 of the paper ("Ferric carboxymaltose should be considered as one of the first-line treatments in patients with RLS."). Also highlight the algorithm on page 39. Do not highlight other parts. If the doc is interested he/she will rea...
by redshoes
Tue Aug 20, 2019 2:31 pm
Forum: Prescription Medications
Topic: Effectiveness of Neupro patch
Replies: 15
Views: 1468

Re: Effectiveness of Neupro patch

Thank you for the sciencedirect link to the Allen et al. paper on IV iron, stjohn. Heavy lifting for a layperson, but it did answer one question I had—which was, why IV iron would be more effective than swallowing iron supplements to increase brain iron. I'll have to read it again a few more times, ...
by redshoes
Thu Aug 15, 2019 2:59 am
Forum: Prescription Medications
Topic: Effectiveness of Neupro patch
Replies: 15
Views: 1468

Re: Effectiveness of Neupro patch

My symptoms are mostly controlled with the Neupro patch, for the 6 months I have been on it, since Feb 2019, but it is not a satisfactory medication long term, for various reasons. (My RLS symptoms are intolerable jumpiness in the knees, inability to lie down without getting up, no matter how tired ...
by redshoes
Tue Aug 13, 2019 3:30 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: What kind of Oral Iron?
Replies: 7
Views: 1344

Re: What kind of Oral Iron?

Ann: Has the intravenous iron infusion worked for you? Has it relieved your RLS symptoms?
by redshoes
Thu Mar 07, 2019 8:38 pm
Forum: Prescription Medications
Topic: NeuPro: keeping track of patch locations
Replies: 21
Views: 2822

Re: NeuPro: keeping track of patch locations

Hi all, My neurologist has put me on Neupro (after I was on 2.5 mg ropinirole for 13 years and started augmenting). I quickly went up to a 4 mg patch + 600 mg gabapentin + 6 mg melatonin, which juuuuuust about works, most nights. Fortunately, I can supplement this with a .5 mg ropinirole, if I have ...
by redshoes
Sun Feb 17, 2019 8:21 pm
Forum: Just Joined?
Topic: Introducing myself
Replies: 5
Views: 655

Re: Introducing myself

Yes, ferritin tests result was 42, down from 70+ a year ago, so I started on iron supplement. I will go over to the augmentation topic. Thank you so much for your comments, all.
by redshoes
Fri Feb 15, 2019 2:43 pm
Forum: Just Joined?
Topic: Introducing myself
Replies: 5
Views: 655

Re: Introducing myself

Thanks. Last night was much better, at 4 mg Neupro, possibly due to (1) avoiding Seroquel, and (2) taping down the Neupro patch. Thank you both for your welcome and suggestions. I’ll just have to see how it goes.

See you on the board!