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by stjohnh
Tue Jan 22, 2019 8:14 pm
Forum: Physical Treatments
Topic: Cold Turkey Blues
Replies: 10
Views: 97

Re: Cold Turkey Blues

Why did you decide to get off the pramipexole? Exactly what problem did it cause?. The first 6 months on pramipexole were brilliant... ...I think my sociability has deteriorated ... pramipexole distorted my emotions somewhat. Very difficult to nail down in words, but something like I lost passion f...
by stjohnh
Mon Jan 21, 2019 11:27 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 34
Views: 1442

Re: Experience with Injectafer?

Holland, I hope things have settled down and you have returned to 'normal' you. I suspect that Beth may be correct that aggravating the hip may have irritated your rls. It could also be the reduction/elimination of kratom. I definitely find an appreciable - though not excruciating - increase in my ...
by stjohnh
Mon Jan 21, 2019 4:54 pm
Forum: Physical Treatments
Topic: Cold Turkey Blues
Replies: 10
Views: 97

Re: Cold Turkey Blues

I am going for my first iron infusion this Wed., the 23rd. I am a little apprehensive and wonder if anyone has had an infusion. In my research, there are many references to patients having them 6-8 times, each lasting 6+ hours. My hematologist told me mine would be done twice...a week apart and eac...
by stjohnh
Mon Jan 21, 2019 4:52 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 34
Views: 1442

Re: Experience with Injectafer?

Copied from another thread. This is Reba1's first post: I am going for my first iron infusion this Wed., the 23rd. I am a little apprehensive and wonder if anyone has had an infusion. In my research, there are many references to patients having them 6-8 times, each lasting 6+ hours. My hematologist ...
by stjohnh
Mon Jan 21, 2019 3:34 pm
Forum: Physical Treatments
Topic: Cold Turkey Blues
Replies: 10
Views: 97

Re: Cold Turkey Blues

Thanks for the encouragement and info! I had a second day of decent sleep, legs are low intensity. ... It's weird but I feel a little euphorical now that I've ditched the pramipexole, a bit more clarity about what's going on. Why did you decide to get off the pramipexole? Exactly what problem did i...
by stjohnh
Sun Jan 20, 2019 9:41 pm
Forum: General Topics: RLS/WED
Topic: Esophageal Spasm and RLS
Replies: 9
Views: 66

Re: Esophageal Spasm and RLS

I have to make the appointment with the hematologist - I just receive the authorization in the mail yesterday, so I'll make the appointment tomorrow - hopefully they can see me soon. I think Buchfuhrer wrote Injectafer on the order. I don't have the results from the most recent blood tests - just h...
by stjohnh
Sun Jan 20, 2019 9:23 pm
Forum: Physical Treatments
Topic: Cold Turkey Blues
Replies: 10
Views: 97

Re: Cold Turkey Blues

I've spend the last 8 days trying to give up pramipexole... It has been brutal. Welcome wilabozo. You have come to the right place. "Brutal" is a good description of the torment you, me and many others on this forum have experienced. I usually use "torture" to describe my experi...
by stjohnh
Sat Jan 19, 2019 10:56 pm
Forum: General Topics: RLS/WED
Topic: Esophageal Spasm and RLS
Replies: 9
Views: 66

Re: Esophageal Spasm and RLS

No - I never figured it mattered to get it diagnosed as I didn't think they could do anything about it. Mostly true, though if my theory is correct it could be treated with IV Iron. I have had them since my late twenties. Sometimes it is worse than others. Does anything else make your chest feel th...
by stjohnh
Fri Jan 18, 2019 8:59 pm
Forum: General Topics: RLS/WED
Topic: Esophageal Spasm and RLS
Replies: 9
Views: 66

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: 9
Views: 66

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: 9
Views: 66

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: 34
Views: 1442

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: 4338

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: 1432

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: 34
Views: 1442

Re: Experience with Injectafer?

Rachel, Betty and Steve. Thanks so much for the kind comments.

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