Search found 1284 matches

by stjohnh
Fri Oct 14, 2022 1:31 pm
Forum: Prescription Medications
Topic: Dipyridamole
Replies: 170
Views: 51976

Re: Dipyridamole

Paul, I am here but generally not posting. I have developed MCI (Mild Cognitive Impairment) and so don't want to give bad advice. The best recommendation I have is to see if you can get IV Iron, preferably Injectafer, if you haven't. If you want to go the dipyridamole route, you will need a prescrip...
by stjohnh
Mon Jan 24, 2022 10:40 pm
Forum: General Topics: RLS
Topic: Mixed Messages Regarding RLS Research
Replies: 3
Views: 5180

Re: Mixed Messages Regarding RLS Research

Well, there is lots in the "Published Research" section of this forum

viewtopic.php?f=5&t=4749

If you want to know about what studies are in progress now (I.E. Data has not been fully collected and reports have not been published):
https://clinicaltrials.gov/
by stjohnh
Sat Jan 22, 2022 2:18 am
Forum: Prescription Medications
Topic: Horizant Fog?
Replies: 3
Views: 2233

Re: Horizant Fog?

Most likely from Horizant. Going off the Neupro doesn't cause this. Sleepiness is the most common side effect and the prescribing info says it occurs in at least 10%. It may diminish with time, or you can use a lower dose.
by stjohnh
Tue Jan 11, 2022 9:37 pm
Forum: Prescription Medications
Topic: Navigating care…do I go back on DAs?
Replies: 18
Views: 5226

Re: Navigating care…do I go back on DAs?

Do what Steve said.
by stjohnh
Sun Jan 09, 2022 3:35 pm
Forum: Just Joined?
Topic: Cymbalta use
Replies: 2
Views: 2908

Re: Cymbalta use

Doesn't seem to make my RLS worse. Though what about gabapentin? It is commonly used for neuropathic pain AND it treats RLS...
by stjohnh
Thu Dec 16, 2021 12:53 pm
Forum: Prescription Medications
Topic: Low Dose Dopamine Agonist Questions
Replies: 10
Views: 5585

Re: Low Dose Dopamine Agonist Questions

Hmmm... I'll see what I can find.
by stjohnh
Wed Dec 15, 2021 3:22 am
Forum: Prescription Medications
Topic: Low Dose Dopamine Agonist Questions
Replies: 10
Views: 5585

Re: Low Dose Dopamine Agonist Questions

I augmented about 4 years ago on 0.375 mg pramipexole, got off it (one of the most memorable and awful experiences of my life) and stayed off it for a few months. I was subsequently able to restart pramipexole at 0.0625mg daily (one half of the smallest size tablet). It helped a lot, and I never had...
by stjohnh
Wed Dec 15, 2021 3:06 am
Forum: General Topics: RLS
Topic: Is anyone else pretty debilitated by RLS?
Replies: 8
Views: 6561

Re: Is anyone else pretty debilitated by RLS?

Well, I continue to suffer considerably, even though I am MUCH better with IV iron as my main RLS treatment. Basically, I have to take medicine to sleep, awake slightly less tired than when I went to sleep. I am ok (NOT "good") from 6am to about noon and then deteriorate steadily until I go to sleep...
by stjohnh
Mon Dec 13, 2021 3:49 pm
Forum: Prescription Medications
Topic: Dipyridamole
Replies: 170
Views: 51976

Re: Dipyridamole

Subjective sleep quality improved, but the proxy I was using for deep sleep (heart rate variability) didn't change much. But the only real way to check is with a brain wave study (dedicated EEG type sleep instrument, formal sleep study, etc.) The big improvement was in a feeling of well being during...
by stjohnh
Mon Dec 13, 2021 3:45 pm
Forum: Prescription Medications
Topic: Venofer (Iron Sucrose)
Replies: 11
Views: 3825

Re: Venofer (Iron Sucrose)

Good luck. It usually takes a few weeks for IV iron to have and effect.
by stjohnh
Fri Dec 10, 2021 10:27 pm
Forum: Just Joined?
Topic: Ferritin Level Not the Issue
Replies: 8
Views: 4607

Re: Ferritin Level Not the Issue

The question of iron levels is one that is exceedingly complex, as Holland's second reference points out. ... And if only there were a way to elevate brain iron for those of us with the combination of high ferritin and severe RLS. Before I got my IV iron infusions I tried several things, the nails ...
by stjohnh
Fri Dec 10, 2021 12:37 am
Forum: Just Joined?
Topic: Ferritin Level Not the Issue
Replies: 8
Views: 4607

Re: Ferritin Level Not the Issue

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5890889/ This article reviews the multiple functions of ferritin, with careful explanations of how they work. https://www.sciencedirect.com/science/article/pii/S0006497120608254?via%3Dihub This one also is a general article on the many things (besides ir...
by stjohnh
Wed Dec 08, 2021 3:14 am
Forum: Just Joined?
Topic: Ferritin Level Not the Issue
Replies: 8
Views: 4607

Re: Ferritin Level Not the Issue

Hi Maulsby, I'm glad you found our group, hopefully you can get some good information. There are two issues in your post that I'd like to address: First, 2.5 mg of pramipexole is a VERY high dose, well above the acceptable range of treatment for RLS. At that dose, you have almost certainly augmented...
by stjohnh
Tue Nov 30, 2021 9:50 pm
Forum: Everything Else...just no RLS!
Topic: Surgery
Replies: 18
Views: 11304

Re: Surgery

I'm so sorry.
by stjohnh
Sun Nov 28, 2021 9:17 pm
Forum: Prescription Medications
Topic: Venofer (Iron Sucrose)
Replies: 11
Views: 3825

Re: Venofer (Iron Sucrose)

I don't have any experience with this, but the International Restless Legs Syndrome Study Group guidelines paper says in part 5.4.1 that iron sucrose "is probably not effective." If possible, it is probably best to use Injectafer (ferric carboxymaltose). If not available or too expensive, the best e...