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by fuz_mind
Sun Oct 13, 2019 3:08 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

it's interesting that even within the moderators whom I respect have tons more experience and knowledge with the condition - even your own doctors are interpreting the guidelines differently.......
by fuz_mind
Sun Oct 13, 2019 3:06 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

... @stjohnhh - i had my first post iv blood test results back 10 weeks post IV. Obviously I only had 1 500mg dose. frustrated and somewhat angsty with the blood test results. iron saturation is at 45% but the ferritin level was only up to 232. the sleep and symptoms have defn improved post iv iron...
by fuz_mind
Sun Oct 13, 2019 3:03 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

How much ropinirole are you on - are you still at 1.25? What did you increase to? I don't fully know your situation but increasing it seems like a bad idea. You are probably augmenting, since the symptoms spread to your arms (whether creepies or jerking, spread of either thing is probably augmentat...
by fuz_mind
Sat Oct 12, 2019 3:09 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

Your doc is correct except for the last phrase: The guidelines say: Consider repeat (note no dosage change) if initial improvement (IE you got better from the IV Iron you had 2 years ago), and ferritin<300, and more than 12 weeks has passed since the initial IV infusion (it has been 2 years for you...
by fuz_mind
Sat Oct 12, 2019 2:50 pm
Forum: Just Joined?
Topic: 1st post after 24 years of RLS
Replies: 33
Views: 393

Re: 1st post after 24 years of RLS

hi i hear you.... i'm not medically trained and can only share from my own experience. lyrica had a similar but much smaller side effect profile for me than the gabapentin i have and still am on tramadol and clonazapam (actually it was the combination of tramadol and clonzapam that helped my neurolo...
by fuz_mind
Fri Aug 09, 2019 12:37 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

This is the reply from my doc "My understanding of the guideline is different. The decision to give IV Iron initially is still ferritin 100 mg or below as there is insufficient data for 100-300 mg of ferritin. However, if you show improvement with IV Iron initially, and later deteriorate, desp...
by fuz_mind
Thu Aug 08, 2019 4:17 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

'' my doc was concerned that 1000mg was too much and he had told me that he wouldn't give me 500mg on 2 occasions. I'm not sure how much of it is guided by the concern that my ferritin levels is > 100. is there a paper that you would recommend that i can show him? Figure 5 on page 39 of the IRLSSG C...
by fuz_mind
Thu Aug 08, 2019 12:05 am
Forum: Prescription Medications
Topic: worsening symptoms after IV iron
Replies: 2
Views: 89

worsening symptoms after IV iron

hi all just wondering if people have experienced any worsening of symptoms after IV iron? after 1 week of iv iron, the pain in my legs have increased. sleep is not great - i'm consistently up by 3-4am. having said that I wasn't in a gd shape before the IV iron but now im worried about speaking to my...
by fuz_mind
Mon Aug 05, 2019 11:21 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

do u see any difference when u have 1 vs 2 infusions?
by fuz_mind
Mon Aug 05, 2019 2:47 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

my doc was concerned that 1000mg was too much and he had told me that he wouldn't give me 500mg on 2 occasions. I'm not sure how much of it is guided by the concern that my ferritin levels is > 100. is there a paper that you would recommend that i can show him? Figure 5 on page 39 of the IRLSSG Con...
by fuz_mind
Sun Aug 04, 2019 4:20 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

Hmmm, your recent IV was lower dose than recommended. Any chance you can get another 500mg IV asap? You have a better chance of responding. my doc was concerned that 1000mg was too much and he had told me that he wouldn't give me 500mg on 2 occasions. I'm not sure how much of it is guided by the co...
by fuz_mind
Sat Aug 03, 2019 2:24 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

... im apparently the first person to ever receive iv iron for rls......and the sleep specialist in my country ... i give up... Any possibility of going to another country to get treated? i considered going to the States for treatment in 2017/2018, but legs were too bad to make the flight i might c...
by fuz_mind
Sat Aug 03, 2019 2:18 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

some gd news to share i got my iv iron eventually. but it took another fall for it to happen (i'm particularly clumsy when sleep deprived) im hoping that my symptoms get better soon.... Can you give details? ferric carboxymaltose (Injectafer) or some other type of IV Iron? How many mg dose? How man...
by fuz_mind
Sat Aug 03, 2019 2:13 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 57
Views: 6291

Re: Rate of Ferritin Decline

some gd news to share i got my iv iron eventually. but it took another fall for it to happen (i'm particularly clumsy when sleep deprived) im hoping that my symptoms get better soon.... So sorry about the fall! But, glad they did it! the fall was ok, not the first time or most serious. i'm glad tha...
by fuz_mind
Sat Aug 03, 2019 2:11 pm
Forum: Prescription Medications
Topic: myoclonus
Replies: 16
Views: 243

Re: myoclonus

That is good. i'm wondering if this is a sign of augmentation? if it improves with reduction of medication? because my neurologist and his learned colleagues r of the opinion that the leg and hand jerking are a sign that i need more ropinirole In my experience and that of people here (anecdotal, bu...

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