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by stjohnh
Fri Jan 18, 2019 8:59 pm
Forum: General Topics: RLS/WED
Topic: Esophageal Spasm and RLS
Replies: 5
Views: 24

Re: Esophageal Spasm and RLS

ALL THE TIME!!!!! OK, that was hyperbole, but I do have it. And, now that you mention it, I had not had any in a long time, but in the last month, I've had them almost daily. That coincides with my low iron reading after the last infusion is wearing off. Interesting... Ann, did you get a GI workup ...
by stjohnh
Fri Jan 18, 2019 8:57 pm
Forum: General Topics: RLS/WED
Topic: Esophageal Spasm and RLS
Replies: 5
Views: 24

Re: Esophageal Spasm and RLS

Odd you should mention this because I have had one or two episodes in the last few weeks of discomfort beneath the sternum at about the time that I was going to bed. The feeling was only there for about a minute and wasn't the crushing feeling I see described for heart issues and there were no othe...
by stjohnh
Fri Jan 18, 2019 6:26 pm
Forum: General Topics: RLS/WED
Topic: Esophageal Spasm and RLS
Replies: 5
Views: 24

Esophageal Spasm and RLS

Does anyone have esophageal spasm and RLS? I ask because I am starting to think that esophageal spasm (currently unknown cause by doctors) may have as it's root abnormal iron metabolism, just like RLS. I am a 71 year old guy with severe RLS. I started developing chest pains 6-9 months ago. Not parti...
by stjohnh
Thu Jan 17, 2019 9:02 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 29
Views: 1313

Re: Experience with Injectafer?

I am now 6 weeks since finishing my Injectafer. Still doing well, but hit a bit of a speed bump. I was doing wonderfully on tapering off of my kratom. My sister said "you are acting like your old self again." More alert, laughing more, more complex discussions, etc. She said, "have yo...
by stjohnh
Mon Jan 14, 2019 5:59 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Kratom berry compote
Replies: 30
Views: 4256

Re: Kratom berry compote

I have using Kratom successfully for RLS for a year and a half. My big concern is the ongoing efforts to ban it. It has been banned in 5 states already. Not in Nevada, thank goodness. I bought several kilograms a year or so because of this worry. As much as I can tell, online sources say it is quit...
by stjohnh
Sat Jan 12, 2019 8:09 pm
Forum: Prescription Medications
Topic: Attempting to get off Ropinirole - again
Replies: 38
Views: 1409

Re: Attempting to get off Ropinirole - again

I was surprised at the suggestion to go cold turkey from 3.5mg. Yes, 4mg is the official max but those 'in the know' which includes Dr B, understand that Ropinerole/Requip should be 1mg max. Hence also surprised that my 3.5 mg Ropinerole was referred to as a moderate dose. Well, remember that ropin...
by stjohnh
Tue Jan 08, 2019 10:52 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 29
Views: 1313

Re: Experience with Injectafer?

Rachel, Betty and Steve. Thanks so much for the kind comments.
by stjohnh
Tue Jan 08, 2019 2:05 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 29
Views: 1313

Re: Experience with Injectafer?

Hooray!!! It is starting to look like I may have won the IV Iron Infusion Lottery!!! By that I mean that about 1/2 of people getting IV Iron have no improvement, 1/4 get some improvement, and 1/4 get complete resolution of symptoms. :D :D :D :D A nice little aside, it looks like my insurance company...
by stjohnh
Sat Jan 05, 2019 9:18 pm
Forum: Physical Treatments
Topic: Any luck with a sleep study?
Replies: 17
Views: 501

Re: Any luck with a sleep study?

I have just recently joined this discussion board. I've suffered with RLS for over 12 years. I did have the sleep study a year ago this month...and yes it is working. I literally detest having to use it but it has helped immensely. I'm on the c-pap and oxygen. I also take gabapentin twice a day and...
by stjohnh
Sat Jan 05, 2019 7:26 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Proferrin/Iron Heme Polypeptide Tablet
Replies: 9
Views: 185

Re: Proferrin/Iron Heme Polypeptide Tablet

Another provocative article. What I found most interesting is that HIP iron utilization was not related to hepcidin levels, increasing the possibility it could increase ferritin above 100.
by stjohnh
Sat Jan 05, 2019 12:54 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Proferrin/Iron Heme Polypeptide Tablet
Replies: 9
Views: 185

Re: Proferrin/Iron Heme Polypeptide Tablet

Hmmm.. Tantalizing information in that article. The fact that the patients all had severe chronic kidney disease makes extrapolation to the normal-kidney group that most of us are in difficult. Also the paper said that ferritin in the IV group increased significantly compared to the oral group. Ferr...
by stjohnh
Fri Jan 04, 2019 10:44 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 29
Views: 1313

Re: Experience with Injectafer?

Great news! I was able to reduce by about 55% after the second and third infusions. It just didn't last as long as I'd have hoped. Here is hoping yours does! Ann, do you know how fast your ferritin drops after the infusion? The IRLSSG paper recommends a ferritin at 8 weeks and 16 weeks post infusio...
by stjohnh
Fri Jan 04, 2019 8:38 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 29
Views: 1313

Re: Experience with Injectafer?

I am now 3 weeks since finishing my Injectafer infusions. For the last week or so I have been doing well on 1/2 of my usual 0.0625mg pramipexole dose (1/4 of a 0.125mg tab). For the last few days I seem to have more energy in the day, but I had been fighting a nasty cold that was resolving about the...
by stjohnh
Fri Jan 04, 2019 7:56 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Proferrin/Iron Heme Polypeptide Tablet
Replies: 9
Views: 185

Re: Proferrin/Iron Heme Polypeptide Tablet

rlsgal70 wrote:Has anyone here tried Iron Heme Polypeptide Tablet/Proferrin as an iron supplement. I read some articles which say that it works as well as Intravenous Iron Sucrose.


Do you have a link to the article?
by stjohnh
Fri Jan 04, 2019 5:49 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Proferrin/Iron Heme Polypeptide Tablet
Replies: 9
Views: 185

Re: Proferrin/Iron Heme Polypeptide Tablet

I have no experience with this. I read the Wikipedia articles, and it appears to me that these react in the stomach and intestine to form the same iron ions that ferrous sulfate does. If so, then they are likely to cause less stomach upset than Ferrous sulfate, but also unlikely to get your blood fe...

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