Search found 1204 matches

by stjohnh
Wed May 12, 2021 2:15 pm
Forum: Prescription Medications
Topic: Ok to remove pramipexole cold turkey if starting pregabalin
Replies: 4
Views: 111

Re: Ok to remove pramipexole cold turkey if starting pregabalin

Bill, There is no problem with overlapping pregabalin and pramipexole, they are commonly used together. Stopping the pramipexole at 0.375mg daily is probably ok, but Steve knows more about this than me. The main risk is DAWS (Dopamine Agonist Withdrawal Syndrome), but I think you are ok at 0.375mg. ...
by stjohnh
Fri May 07, 2021 10:05 pm
Forum: Just Joined?
Topic: New Member Augmentation?
Replies: 14
Views: 553

Re: New Member Augmentation?

Keep your appt w Dr B. He is known to prescribe IV Iron for some patients that have ferritin levels above the guideline cutoffs. Of course, he will also confirm (or refute) the RLS diagnosis.
by stjohnh
Fri May 07, 2021 5:21 pm
Forum: General Topics: RLS
Topic: Is ferritin at 558 something to worry about?
Replies: 7
Views: 141

Re: Is ferritin at 558 something to worry about?

Many lupus patients have very high ferritin test (but normal actual iron levels in their blood).
by stjohnh
Fri May 07, 2021 3:19 pm
Forum: Prescription Medications
Topic: Struggling to find some balance
Replies: 6
Views: 116

Re: Struggling to find some balance

Two points to add to what Betty wrote: First, RLS is due to Brain Iron Deficiency and you should attempt to get iron treatment. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only tre...
by stjohnh
Fri May 07, 2021 12:13 am
Forum: General Topics: RLS
Topic: Is ferritin at 558 something to worry about?
Replies: 7
Views: 141

Re: Is ferritin at 558 something to worry about?

While it is true that the ferritin test is most accurate when done fasting, the difference is minor except in the case of a low ferritin (<20). The iron in the cereal will not change the ferritin test. You need a lot more iron to affect the test. Remember that ferritin is not iron. It is a protien t...
by stjohnh
Wed May 05, 2021 1:43 pm
Forum: Just Joined?
Topic: 1st post after 24 years of RLS
Replies: 156
Views: 12481

Re: 1st post after 24 years of RLS

Finally talked to a hematologist about my sky high ferritin .... guess what reading the lab omitted from the blood work requisition.... Ferritin lol Anyways... I'm going to have a different genetic/ hemachromatosis test I voiced my concern about treating iron overload In the unlikely hood it would ...
by stjohnh
Mon May 03, 2021 9:14 pm
Forum: Just Joined?
Topic: Can Adult ADHD cause RLS
Replies: 4
Views: 212

Re: Can Adult ADHD cause RLS

I am currently taking Ropinirole - 3.5mg per day. The maximum RLS dose is 4 mg per day. I have been taking Ropinirole for over 15 years ... so I am worried about augmentation as well as the fact that I am approaching the daily limit for RLS treatment. Tom, the dose you are taking, while ok as far a...
by stjohnh
Mon May 03, 2021 5:19 pm
Forum: General Topics: RLS
Topic: Feeling cold all the time as a sign I need more iron?
Replies: 6
Views: 69

Re: Feeling cold all the time as a sign I need more iron?

So are you saying that we should just go by symptoms and not by ferritin level? Since it's my rheumatologist who is ordering them-,,, If you have a doctor that will order IV Injectafer for you, I would do whatever the doctor feels comfortable with. I certainly would not criticize any doctor that fo...
by stjohnh
Mon May 03, 2021 4:06 pm
Forum: General Topics: RLS
Topic: Feeling cold all the time as a sign I need more iron?
Replies: 6
Views: 69

Re: Feeling cold all the time as a sign I need more iron?

... While I've got you: my doc didn't think it necessary to test my blood after my infusions to see where the ferritin level went. Think I should ask for that or it doesn't really matter? Thanks! The guidelines suggest a test before each infusion and a test at 8 and 16 weeks post infusion. However,...
by stjohnh
Mon May 03, 2021 3:09 pm
Forum: General Topics: RLS
Topic: Feeling cold all the time as a sign I need more iron?
Replies: 6
Views: 69

Re: Feeling cold all the time as a sign I need more iron?

Hello everyone, Background: had Injectafer infusions in late Sept/early October and had hoped they would last a year--but then I've seen posts on FB where some just get infusions every 6 months. Wondering if it is common or not to have a constant feeling of coldness as a sign that it's time for mor...
by stjohnh
Sat May 01, 2021 12:37 am
Forum: General Topics: RLS
Topic: Should the name RLS be changed?
Replies: 5
Views: 286

Re: Should the name RLS be changed?

This is a known problem, and efforts have been made in the past to do this. I'm not sure, but I think at one time the RLS Foundation was indeed named Willis-Ekbom Disease Foundation. Pretty much everyone agress that Restless Legs Syndrome elicits an image of a fidgity toddler, who will "just grow ou...
by stjohnh
Fri Apr 30, 2021 12:59 am
Forum: Augmentation
Topic: Iron Infusion - decreasing dopamine agonist
Replies: 2
Views: 288

Re: Iron Infusion - decreasing dopamine agonist

If you respond to Injectafer (many don't, reason is not currently known), it usually takes a few weeks for the improvement to become apparent. You should decrease the ropinirole ASAP, but if you don't have any opioids to help you through the agony of ropinirole withdrawal, you may want to wait until...
by stjohnh
Sun Apr 25, 2021 3:11 pm
Forum: Just Joined?
Topic: Can Adult ADHD cause RLS
Replies: 4
Views: 212

Re: Can Adult ADHD cause RLS

Hi Tom, Wecome to the forum. Interesting article you cite. I don't know much about adult ADHD, but all of thesymptoms you report can simply be due to RLS. I have no idea if restarting the methyphenidate will help. Why not ask your doc for 10 tablets or so and try it? It will help us understand your ...
by stjohnh
Sun Apr 25, 2021 12:43 am
Forum: Just Joined?
Topic: New Member Augmentation?
Replies: 14
Views: 553

Re: New Member Augmentation?

My doctor has not checked Ferritin Serum blood levels. When I talked to him about Ferritin/iron levels in my brain he said there would be nothing he could do about that. I can ask him to check the Ferritin Serum level in my blood. What course of action can be taken if my level is below 75? Is there...