Infusion Update

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Polar Bear
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Location: N. Ireland

Re: Infusion Update

Postby Polar Bear » Mon Mar 06, 2017 12:26 pm

will likely keep augmentation at bay and hopefully no issues with tolerance until I get back to California in a few months. I'd rather wait until I am back to start making med changes. It will be easier that way. I only need to hold out a short time. I can do that!

Ann - my wish for you - that you get to waken to the 'birdies sing an' everything'

California, here I come right back where I started from.
Where Bowers of flowers bloom in the sun.
Each morning at dawning, birdies sing an' everything.
A sunkist miss said, "Don't be late" that's why I can hardly wait.
Open up that Golden Gate,
California here I come.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
Posts: 320
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Infusion Update

Postby legsbestill » Mon Mar 06, 2017 8:36 pm

Good luck, Ann.

ViewsAskew
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Location: Chicago

Re: Infusion Update

Postby ViewsAskew » Mon Mar 06, 2017 11:18 pm

What a lovely thing to see after grading student papers...
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Location: Northwest Territories, Canada

Re: Infusion Update

Postby badnights » Wed Mar 08, 2017 9:43 am

Happy Birthday (late) to Sleepy Angel!

Ann, regarding iron crossing the bbb wrote:I've read of at least two different experiments to get things through the blood brain barrier. I posted one of them a year or so ago.
I've often wondered what the obstacles are to injecting some kind of iron directly into the CSF. Like a lumbar puncture in reverse. Pain, risk of bleeding & maybe infection; and not knowing what or how much to inject nor how you could experiment to determine those things?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

fuz_mind
Posts: 43
Joined: Sun Apr 23, 2017 4:27 pm

Re: Infusion Update

Postby fuz_mind » Fri Jun 16, 2017 5:40 pm

ViewsAskew wrote:I love this place.



love it too!

fuz_mind
Posts: 43
Joined: Sun Apr 23, 2017 4:27 pm

Re: Infusion Update

Postby fuz_mind » Fri Aug 11, 2017 4:09 am

[quote="ViewsAskew"] To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200.

hello viewsakew, i don't think I really understand the above very well, do you mind explaining it for me? I was under the impression that it is ok as long as we keep ferritin >100. have I misunderstood what you are saying i.e. your ferritin needs to be > 200 to manage your symptoms?

Polar Bear
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Location: N. Ireland

Re: Infusion Update

Postby Polar Bear » Fri Aug 11, 2017 8:10 am

fuz_mind - in general an RLS sufferer should aim to have their ferritin level up around 100 which is higher than the accepted 20 as being normal. However, for some people a level of 100 is not sufficient and they find their symptoms can be easier controlled and augmentation better avoided if their ferritin is much higher than 100, for example around 200. (and also higher) We are all different and the level at which ferritin will benefit our symptoms will vary.

For many years my ferritin was in the 70/80 region and last year it was around 130, I wasn't taking any OTC Iron supplement and how it managed to rise to this I don't know, but I'm happy that it has done so.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Location: Chicago

Re: Infusion Update

Postby ViewsAskew » Fri Aug 11, 2017 5:03 pm

fuz_mind wrote:
ViewsAskew wrote: To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200.


hello viewsakew, i don't think I really understand the above very well, do you mind explaining it for me? I was under the impression that it is ok as long as we keep ferritin >100. have I misunderstood what you are saying i.e. your ferritin needs to be > 200 to manage your symptoms?


I think Polar Bear answered, but wanted to make sure you didn't think I was ignoring you :-). Yes, I need mine to be greater than 200* to reduce symptoms by about 50%. Does not eliminate them, but reducing opioids by 50% is a very good thing. I still get some benefit in the 100s, but as it decreases, the symptoms increase. By the time I hit 100 or so, I have lost all benefit.

The Johns Hopkins researchers figured this out. They would test the ferritin immediately when symptoms were eliminated or reduced. Then, they would take the measure again when symptoms recurred. That is how they realized that the level was different for people. They recommend that anyone who gets an infusion have ferritin measured multiple times so that you know the values at which it helps and at which it does not.

When I had my first infusion, I only had reduced symptoms for a week. The level plummeted quickly. The second time, I had full benefit for a few months, and partial benefit for almost a year. So far, after my third, it has been 7 months and I still have full benefit, so am guessing my ferritin is still around 200 or a bit higher.

*I am not sure of the exact value because my doc did the wrong test one time so there was a several week lag before the right test was done, and no test was done the other two times. What I know is that when it was around 175 I was already seeing decreased benefit, so am guessing that it is around 200 where I get the full benefit.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

fuz_mind
Posts: 43
Joined: Sun Apr 23, 2017 4:27 pm

Re: Infusion Update

Postby fuz_mind » Sat Aug 12, 2017 9:57 am

ViewsAskew wrote:
fuz_mind wrote:
ViewsAskew wrote: To add to that, some people need a measure of 75, some 100, some 200. At Johns Hopkins, Dr Earley notes the level at which they are diminished and then keeps the ferritin at least that high. For me, this is over 200.


hello viewsakew, i don't think I really understand the above very well, do you mind explaining it for me? I was under the impression that it is ok as long as we keep ferritin >100. have I misunderstood what you are saying i.e. your ferritin needs to be > 200 to manage your symptoms?


I think Polar Bear answered, but wanted to make sure you didn't think I was ignoring you :-). Yes, I need mine to be greater than 200* to reduce symptoms by about 50%. Does not eliminate them, but reducing opioids by 50% is a very good thing. I still get some benefit in the 100s, but as it decreases, the symptoms increase. By the time I hit 100 or so, I have lost all benefit.

The Johns Hopkins researchers figured this out. They would test the ferritin immediately when symptoms were eliminated or reduced. Then, they would take the measure again when symptoms recurred. That is how they realized that the level was different for people. They recommend that anyone who gets an infusion have ferritin measured multiple times so that you know the values at which it helps and at which it does not.

When I had my first infusion, I only had reduced symptoms for a week. The level plummeted quickly. The second time, I had full benefit for a few months, and partial benefit for almost a year. So far, after my third, it has been 7 months and I still have full benefit, so am guessing my ferritin is still around 200 or a bit higher.

*I am not sure of the exact value because my doc did the wrong test one time so there was a several week lag before the right test was done, and no test was done the other two times. What I know is that when it was around 175 I was already seeing decreased benefit, so am guessing that it is around 200 where I get the full benefit.



thanks polarbear & views for explaining! it's clearer to me now :)


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