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by stjohnh
Wed Apr 01, 2020 6:19 pm
Forum: General Topics: RLS/WED
Topic: RLS, iron infusions, and ferritin levels.
Replies: 3
Views: 34

Re: RLS, iron infusions, and ferritin levels.

It is possible he is augmenting on 0.125mg mirapex, but that is a low dose and it is not very likely. If he has augmented previously on mirapex then it is much more likely.
by stjohnh
Tue Mar 31, 2020 7:35 pm
Forum: General Topics: RLS/WED
Topic: RLS, iron infusions, and ferritin levels.
Replies: 3
Views: 34

Re: RLS, iron infusions, and ferritin levels.

Well, unfortunately there are no currently available iron tests that will help. It MAY be possible that one of the RLS specialists would order another iron infusion, but even then it may be an uphill battle. You didn't say exactly why he is not sleeping. If it is urge-to-move keeping him awake maybe...
by stjohnh
Mon Mar 30, 2020 10:49 pm
Forum: Just Joined?
Topic: Hello
Replies: 4
Views: 58

Re: Hello

Hi Blueberry,
I don't think I quite understand. Do you have RLS now, or only previously and it went away? What problem do you have now? By "iron perfusion" do you mean extra iron given into your vein? And if so, what was the reason for the extra iron?
by stjohnh
Sun Mar 29, 2020 11:22 pm
Forum: General Topics: RLS/WED
Topic: 54 years Dealing with RLS
Replies: 7
Views: 68

Re: 54 years Dealing with RLS

Robin, sounds like things have improved with the methadone. I agree with Steve, get iron infusions if you qualify. You really haven't said what your current status is: How much problem do you have with urge-to-move (jumpy legs when you lie down)? How much trouble do you have sleeping? Marijuana (THC...
by stjohnh
Sun Mar 29, 2020 5:19 pm
Forum: Physical Treatments
Topic: What’s working for me
Replies: 23
Views: 1721

Re: What’s working for me

Yes, The Advil PM is a BIG problem. It contains diphenhydramine, which is generic Benadryl. It is one of the meds that always causes RLS to worsen. Don't take anything with Benadryl or diphenhydramine in it.
by stjohnh
Thu Mar 26, 2020 9:10 pm
Forum: Prescription Medications
Topic: Oxycontin vs Methadone
Replies: 6
Views: 69

Re: Oxycontin vs Methadone

What's the problem with vaping THC every night?
by stjohnh
Mon Mar 23, 2020 12:23 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Ferritin increased with oral iron, now what?
Replies: 9
Views: 504

Re: Ferritin increased with oral iron, now what?

Very nice to see a holistic view to managing RLS in the original post, well done on your success. I wouldn't get too excited about iron, but worth a try like many things. ...This 'BID causes RLS' is another cult in RLS.... Well, I think calling "BID causes RLS" a cult is ignoring lots of ...
by stjohnh
Mon Mar 16, 2020 2:03 am
Forum: General Topics: RLS/WED
Topic: Webinar no Audio - Why is my RLS Better but my Sleep is Not?
Replies: 3
Views: 95

Re: Webinar no Audio - Why is my RLS Better but my Sleep is Not?

Still not fixed. I emailed the webmaster today. Also, when you click the photo next to the webinar title, the webinar is supposed to start. When I click the photo next to the Sleep webinar, the SIBO webinar starts, not the Sleep one.
by stjohnh
Fri Mar 13, 2020 7:27 pm
Forum: General Topics: RLS/WED
Topic: Webinar no Audio - Why is my RLS Better but my Sleep is Not?
Replies: 3
Views: 95

Re: Webinar no Audio - Why is my RLS Better but my Sleep is Not?

I just tried it, no audio for me either. Don't know what problem is. Seems to be a problem with just that webinar. I tried another one and it worked well.
by stjohnh
Wed Mar 11, 2020 8:38 pm
Forum: Prescription Medications
Topic: Need advice
Replies: 5
Views: 1292

Re: Need advice

Hmm.. If the ropinirole is short term until you get your IV Iron, then it doesn't seem to me much a problem. OTOH, if you don't really need it, why not continue as you are doing until the IV Iron. Be aware, only about 1/2 of people who get IV Iron will respond to it. It is not known why this occurs....
by stjohnh
Wed Mar 04, 2020 12:31 am
Forum: Prescription Medications
Topic: New neurologist- quality of life dropped.
Replies: 11
Views: 779

Re: New neurologist- quality of life dropped.

I’ve been experimenting with the right dose of medical marijuana. I had hoped that it would solve my RSL and pain problems.  Hmm... A couple of points. The majority of folks on this board that use marijuana for RLS have found it usually helps sleep but NOT urge to move (jumpy legs symptom). There a...
by stjohnh
Sun Mar 01, 2020 8:32 pm
Forum: Prescription Medications
Topic: Tramadol vs Kratom to stop requip
Replies: 12
Views: 759

Re: Tramadol vs Kratom to stop requip

I used kratom, and it helped with getting off the pramipexole. I have also used Tramdol for RLS, though not for getting off pramipexole. I was already augmenting when I started Tramadol, but didn't know it. Tramadol had a lot more side effects for me, though, as I said I was augmenting on pramipexol...
by stjohnh
Sat Feb 29, 2020 5:20 pm
Forum: Just Joined?
Topic: New member with a few questions
Replies: 19
Views: 972

Re: New member with a few questions

Hi RLSlou, and welcome. At the top left of this page you will see "Quick Links" and below that "Main Discussion Board." Click on Main Discussion Board to get an overview of topics. Pick one of the topics and it will show the titles of the posts in that section. If you want to sta...
by stjohnh
Sat Feb 29, 2020 2:24 pm
Forum: Just Joined?
Topic: Very high ferritin levels
Replies: 4
Views: 487

Re: Very high ferritin levels

Hi Karl, Most likely your very high ferritin level is caused by some type of inflammation in your body (infection, autoimmune diseases, asthma, arthritis, etc, etc). Sometimes the cause of a high ferritin cannot be determined, and sometimes it is due to high BLOOD iron. People with RLS have low BRAI...
by stjohnh
Sat Feb 29, 2020 2:09 pm
Forum: Prescription Medications
Topic: New neurologist- quality of life dropped.
Replies: 11
Views: 779

Re: New neurologist- quality of life dropped.

I’ve recently been assigned a new neurologist. I have RSL-... She talked about Methadone, but I can’t tolerate codeine since I’m a hyper metabolizer. ... My ferritin is 89 with a saturation of 17%. I’m considering Iron infusion if my insurance covers it. It’s the only thing my new doc will do, besi...

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