Search found 108 matches

by fuz_mind
Thu Nov 07, 2019 7:55 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 78
Views: 3504

Re: Experience with Injectafer?

I am also surprised that they are willing to to give you IV iron at such high ferritin levels. What guidelines are you referring to? I brought it up with my current doctor, well renown RLS doctor who I trust very much, and was told that I do not meet the criteria because I was over 100. Looking at ...
by fuz_mind
Tue Oct 29, 2019 12:22 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 62
Views: 6925

Re: Rate of Ferritin Decline

I need to go back and read things carefully, It's on my to-do list. I "suggested" to my neuro to email one of the authors and he did! He emailed Dr Richard Allen who reverted very quickly apparently - in a nutshell, in whatever email correspondence they had, my neuro is now convinced that...
by fuz_mind
Tue Oct 29, 2019 12:15 pm
Forum: Prescription Medications
Topic: side effects of iv iron
Replies: 4
Views: 110

Re: side effects of iv iron

Immediately (during?) or over time? post. my sleep and energy level improvement starts kicking in ard 4-5 weeks; but i also start to experience for about 2 weeks or so of excessive internal agitation/energy that i need to get rid of ard week 6-8 post iv (but ends up in me losing my temper mainly :o...
by fuz_mind
Thu Oct 24, 2019 2:59 pm
Forum: Prescription Medications
Topic: side effects of iv iron
Replies: 4
Views: 110

side effects of iv iron

hi all

wanted to check in if anyone has had any temp side effects from IV iron? i have had 3 infusions since 2016 but noticed some similar side effects on my 2nd and 3rd one. wasn't sure if that's just a coincidence or?

thanks for sharing any experience!
by fuz_mind
Thu Oct 24, 2019 2:52 pm
Forum: Prescription Medications
Topic: I'm finally getting an infusion
Replies: 24
Views: 414

Re: I'm finally getting an infusion

The infusion is having a positive effect. At about 3 weeks my symptoms calmed down but stayed within the parameters of previous experience so I couldn't tell if the infusion caused the improvement. Then at about 4 weeks I was able to use 6 mg instead of 9 mg hydromorph contin for 6 nights one week....
by fuz_mind
Sun Oct 13, 2019 3:08 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 62
Views: 6925

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: 62
Views: 6925

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: 62
Views: 6925

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: 62
Views: 6925

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: 64
Views: 1219

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: 62
Views: 6925

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: 62
Views: 6925

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: 137

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: 62
Views: 6925

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: 62
Views: 6925

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...

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