Search found 1284 matches

by stjohnh
Sun Nov 21, 2021 1:48 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Iron Supplementation
Replies: 5
Views: 4431

Re: Iron Supplementation

It is nearly impossible to accidentally overdose on oral iron. Overdoses or oral iron occur most often in children who mistake the tablets for M&Ms. There is a robust protection mechanism in the intestines that prevent almost all absorption of oral iron if the ferritin is above about 100. Dangerous ...
by stjohnh
Thu Nov 18, 2021 2:24 pm
Forum: Prescription Medications
Topic: Getting insurance to pay for IV infusion
Replies: 6
Views: 1711

Re: Getting insurance to pay for IV infusion

Thanks for your long and thoughtful reply. I just think there are other factors to consider that make Iron Dextran a viable option- YMMV. ... For me, the following meets that test: if you watch the rls.org webinar on Iron and RLS, Christopher Earley, no mean expert:-) says at approximately 43:45 th...
by stjohnh
Thu Nov 18, 2021 3:15 am
Forum: Just Joined?
Topic: New Member - MHochner24
Replies: 6
Views: 4039

Re: New Member - MHochner24

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome ...
by stjohnh
Mon Nov 15, 2021 3:27 pm
Forum: Prescription Medications
Topic: Dipyridamole
Replies: 170
Views: 52299

Re: Dipyridamole

I started out on 75MG for 5 days, and have titrated up to 150 mg. ... Gabapentin and Lyrica also give me insomnia, which also act on excess glutamate in the brain and should be making me more tired rather than less. Any ideas why this may be happening? Not really, other than normal sleep is a far m...
by stjohnh
Sat Nov 13, 2021 3:06 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Proferrin/Iron Heme Polypeptide Tablet
Replies: 23
Views: 12619

Re: Proferrin/Iron Heme Polypeptide Tablet

I only took the spleen capsules for a short time, kinda just got tired taking so many pills, LOL. Anyway, I doesn't look like I need them as the IV Iron has become more and more effective. I am currently receiving my 4th set of IV iron infusions, first 1/2 was last Tuesday, second 1/2 this coming Tu...
by stjohnh
Sat Nov 13, 2021 2:56 pm
Forum: Prescription Medications
Topic: Dipyridamole
Replies: 170
Views: 52299

Re: Dipyridamole

No. My IV iron infusions resolved nearly all my RLS symptoms. I still have mild sleep problems which respond well to THC. I have considered restarting dipyridamole to see if it would take the place of THC to help me sleep, but haven't done that yet.
by stjohnh
Fri Nov 12, 2021 12:19 am
Forum: Prescription Medications
Topic: Coming off Meds after IV Iron
Replies: 7
Views: 2443

Re: Coming off Meds after IV Iron

Generally takes 1-2 months for peak effect of IV iron, though there are some that respond more quickly. I waited until it seemed like the residual RLS symptoms I had while taking my prior meds improved. You can start tapering your prior meds when you like, just don't get discouraged if it has been l...
by stjohnh
Sat Nov 06, 2021 2:57 pm
Forum: Prescription Medications
Topic: Getting insurance to pay for IV infusion
Replies: 6
Views: 1711

Re: Getting insurance to pay for IV infusion

Recommended where (just asking)? I've been watching a bunch of the RLS webinars and reading articles, and all of them say that while most (all?) of the trials were with injectafer, but iron dextran and others have been used, and that any of the iron injections should work. Here is a link to the off...
by stjohnh
Tue Nov 02, 2021 3:45 pm
Forum: Prescription Medications
Topic: Weaning off of a low dose of Ropinirole
Replies: 6
Views: 1568

Re: Weaning off of a low dose of Ropinirole

Hmm... Certainly some of your symptoms sound like augmentation, and augmentation does occur more quickly and at lower ropinirole doses if your iron levels are low. Ferritin of 27 is Very low for a person with RLS. Certainly should be above 100. Have you been taking oral iron? If you haven't, then th...
by stjohnh
Tue Nov 02, 2021 1:20 pm
Forum: Prescription Medications
Topic: Weaning off of a low dose of Ropinirole
Replies: 6
Views: 1568

Re: Weaning off of a low dose of Ropinirole

Could you elaborate on the symptoms of augmentation you are experiencing? The reason I ask is that 0.125mg ropinirole is a low dose, and it would be unusual to develop augmentation after only one month of use. Have you had your ferritin checked? If so what is the numerical result? Was it over 100? R...
by stjohnh
Sun Oct 31, 2021 10:19 pm
Forum: Just Joined?
Topic: Newbie to RLS.org, But Worsening Problems
Replies: 21
Views: 5920

Re: Newbie to RLS.org, But Worsening Problems

With your iron numbers, I think getting the IV iron is the way to go. My hematologist is sending me for my fourth set to start in about a week, and my numbers are higher than yours. I am in Palo Alto and the hematologist in Sunnyvale, about a 2-3 hour drive from Davis. I think you can get an appoint...
by stjohnh
Thu Oct 28, 2021 7:24 pm
Forum: General Topics: RLS
Topic: At my breaking point.
Replies: 8
Views: 7202

Re: At my breaking point.

I agree with Ann and Steve: 1. Your doc used the right med to start with. 2. Be sure you get your iron levels (ferritin) checked and find out the actual number of the result, not just "normal" because RLS patients usually need more iron than "normal." 3. User forums like this generally attract peopl...
by stjohnh
Sun Oct 24, 2021 1:06 am
Forum: Prescription Medications
Topic: Iron Testing & Inflammation
Replies: 3
Views: 1394

Re: Iron Testing & Inflammation

It is actually quite difficult to get too much iron in your body, but if you do, it is bad. My hematologist doesn't check inflammatory markers (tests for inflammation), and indeed, he has continued to give me Injectafer (IV iron), even though my ferritin has been in the 400 range (although it was be...
by stjohnh
Sat Oct 23, 2021 4:47 pm
Forum: Just Joined?
Topic: Newbie still exploring
Replies: 8
Views: 3338

Re: Newbie still exploring

by stjohnh
Sat Oct 23, 2021 12:50 am
Forum: Just Joined?
Topic: Newbie still exploring
Replies: 8
Views: 3338

Re: Newbie still exploring

Hi CoachLisaB. I'm glad you found us, though sorry about your troubles. You almost certainly have RLS, your description fits well. The problem you had with the Claritin-D was more likely the claritin portion, which is an antihistamine. They are known to kick off RLS symptoms. When you see your docto...