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by stjohnh
Mon Dec 10, 2018 11:45 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 11
Views: 851

Re: Experience with Injectafer?

Rats... Well I am now 4 1/2 days post first injection. Had one evening of reduced symptoms, but otherwise no change. Not surprising considering most people require a week to several weeks to have a response. My second infusion will be Thursday.
by stjohnh
Sat Dec 08, 2018 6:01 pm
Forum: Physical Treatments
Topic: Using Trail Camera to observe RLS
Replies: 3
Views: 32

Re: Using Trail Camera to observe RLS

Stainless, I spent quite a bit of time researching sleep cycles and their evaluation. I tried a bunch of devices. You might look here: http://bb.rls.org/viewtopic.php?f=5&t=9715#p85880 for more info. Bottom line, I could not find a reliable way to measure deep sleep that correlated with my sense...
by stjohnh
Fri Dec 07, 2018 4:43 pm
Forum: Just Joined?
Topic: New to this group
Replies: 6
Views: 87

Re: New to this group

Deb, Yes, currently it is recommended that the ferritin be above 75 or 100. Those that have ferritins less than that MAY respond to oral iron, though most don't. Again, the blood ferritin tells us next to nothing about brain iron. The reason IV Iron is not recommended for those with ferritin above 3...
by stjohnh
Fri Dec 07, 2018 2:36 pm
Forum: Just Joined?
Topic: New to this group
Replies: 6
Views: 87

Re: New to this group

Deb, Ferritin is an acute phase reactant. That means that it will be artificially elevated if there is any irritation/inflammation anywhere in the body. Current recommendations for IV Iron infusions are that it may be used for people with ferritin below 300, as long as other iron tests show no exces...
by stjohnh
Fri Dec 07, 2018 3:09 am
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 11
Views: 851

Re: Experience with Injectafer?

Well, I am now 24 hours post first Injectafer infusion (second due a week from today). So far, so good. Response to iron infusions is variable, some people having nearly immediate response, but most are delayed, some as long as 6 weeks before maximum effect (and of course about 50% have no response)...
by stjohnh
Thu Dec 06, 2018 11:21 pm
Forum: Just Joined?
Topic: New to this group
Replies: 6
Views: 87

Re: New to this group

Tad4k, Welcome, you have come to the right place. Steve gave you excellent advice. The problem I see is that you are augmenting, like Steve says, and likely it will be impossible for you to wait several months to see one of the Quality Care Clinic specialists. First, I would make the appointment lik...
by stjohnh
Sun Dec 02, 2018 3:10 pm
Forum: Just Joined?
Topic: New to group.
Replies: 22
Views: 210

Re: New to group.

Assuming you are in Minnesota, kratom is legal there, so you should be able to have it by Tuesday if you order today. I think it is the most effective non-prescription medication available for RLS urge-to-move symptoms. RLS is not on the Minnesota Medical Marijuana list, so you are out of luck there...
by stjohnh
Sun Dec 02, 2018 2:51 pm
Forum: Just Joined?
Topic: Introducing myself
Replies: 32
Views: 2193

Re: Introducing myself

Well, here's my theory of DA's and augmentation: As time goes on at a particular dose of a DA, the dopamine receptors get less and less responsive to the DA, requiring higher doses to achieve the same symptom control (the dose increase requirement is a well known aspect of DA treatment of RLS). At s...
by stjohnh
Fri Nov 30, 2018 10:55 pm
Forum: Physical Treatments
Topic: Any luck with a sleep study?
Replies: 14
Views: 245

Re: Any luck with a sleep study?

2BassetMom wrote:I have had 2 sleep studies,.../ He also said that if the apnea is treated I could see a remarkable lessening of my rls. I am glad that I did the study.


Hmmm. I hope he is right, but I think there is not good scientific evidence that treating sleep apnea improves RLS.
by stjohnh
Fri Nov 30, 2018 10:41 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 11
Views: 851

Re: Experience with Injectafer?

Stjohn. Are you talking about people who have an iron deficiency when you say recommending Injectafer for all but the mildest RLS patients...and 25% will have complete remission … I'm a sufferer "with RLS who had a ferritin over 90." The problem with your question, and apparently with the...
by stjohnh
Fri Nov 30, 2018 2:56 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 11
Views: 851

Re: Experience with Injectafer?

I am surprised at the apparent lack of Injectafer recipients. After the IRLSSG consensus paper recommending Injectafer for all but the mildest RLS patients, I would have thought that doctors treating RLS, especially those with an interest in RLS such as neurologists and doctors in the Excellence of ...
by stjohnh
Tue Nov 27, 2018 12:52 am
Forum: Prescription Medications
Topic: Cannabis
Replies: 3
Views: 73

Re: Cannabis

Well, good luck. You certainly deserve some considering how much trouble you have had. I use cannabis edibles every evening to help me sleep. My experience, and I believe the most common experience of RLS patients trying cannabis, is that it doesn't help for urge-to-move symptoms. Many say it helps ...
by stjohnh
Thu Nov 15, 2018 3:33 pm
Forum: Augmentation
Topic: DA’s - If Augmentation from one, from all?
Replies: 3
Views: 365

Re: DA’s - If Augmentation from one, from all?

I noticed from one of your prior posts that you are being treated by Dr. Rye. What does he say about the Sinemet? I also assume he has discussed IV Iron with you. IV Iron was elevated to first line therapy in the recommendation paper published last year by the International Restless Legs Study group...
by stjohnh
Sat Nov 10, 2018 8:53 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Kratom and insomnia
Replies: 7
Views: 152

Re: Kratom and insomnia

Kratom mostly functions like a mild opioid. In that way it is unlikely to help much for a person already on methadone. That said, the ground Kratom Leaf has many psychoactive compounds and it is conceivable that it could help somebody with restless leg syndrome already on methadone get sleep. My per...
by stjohnh
Mon Nov 05, 2018 6:40 pm
Forum: Just Joined?
Topic: New member :)
Replies: 11
Views: 521

Re: New member :)

paigey118, You certainly have a complex set of problems, and as Steve mentioned, the low ferritin and Cymbalta are problems that should be addressed. The way you wrote your summary seems to indicate that you take the Cymbalta for the diabetic neuropathy. Is that why you take it or is it for depressi...

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