Restless Legs Syndrome (RLS) Discussion Board

Has anyone used this IV iron formulation and had success in treating RLS?

Thanks,

Oozz

I don't have any experience with this, but the International Restless Legs Syndrome Study Group guidelines paper says in part 5.4.1 that iron sucrose "is probably not effective." If possible, it is probably best to use Injectafer (ferric carboxymaltose). If not available or too expensive, the best evidence for effectiveness as an alternate to Injectafer, is Low Molecular Weight Iron Dextran.

There are several forum members that have had Venofer, it looks like the most positive is at:viewtopic.php?f=4&t=5793&p=38342&hilit=venofer#p38342

If you put "Venofer" in the search box at the upper right, you will get a list of posts that mention it.

stjohnh wrote: ↑

Sun Nov 28, 2021 9:17 pm

I don't have any experience with this, but the International Restless Legs Syndrome Study Group guidelines paper says in part 5.4.1 that iron sucrose "is probably not effective." If possible, it is probably best to use Injectafer (ferric carboxymaltose). If not available or too expensive, the best evidence for effectiveness as an alternate to Injectafer, is Low Molecular Weight Iron Dextran.

There are several forum members that have had Venofer, it looks like the most positive is at:viewtopic.php?f=4&t=5793&p=38342&hilit=venofer#p38342

If you put "Venofer" in the search box at the upper right, you will get a list of posts that mention it.

Thanks. I saw some of the posts on this, but they were dated. I’m 5/10, I’ll update my results when I get a few weeks out of the full 10.

After my 8th session, I tried weaning from .375 mirapex to .25 but was not successful. I’m going to retry 4-6 weeks after my last session.

Good luck. It usually takes a few weeks for IV iron to have and effect.

Oozz wrote: ↑

Mon Dec 13, 2021 12:30 am

After my 8th session, I tried weaning from .375 mirapex to .25 but was not successful. I’m going to retry 4-6 weeks after my last session.

They say it should work by 8 weeks AFTER it's all in. But I found it takes longer for me. I thought it didn't work when I had one of my first ones. At 6 or 7 weeks, I did the same - tried to reduce medication. But no luck. I tried again a couple weeks later, then again at 9 weeks - no luck. So, I gave up. At about 12-13 weeks, I tried again - cannot remember why, but whether short of meds or what, I found that it worked!

ViewsAskew wrote: ↑

Tue Dec 14, 2021 7:29 am

Oozz wrote: ↑

Mon Dec 13, 2021 12:30 am

After my 8th session, I tried weaning from .375 mirapex to .25 but was not successful. I’m going to retry 4-6 weeks after my last session.

They say it should work by 8 weeks AFTER it's all in. But I found it takes longer for me. I thought it didn't work when I had one of my first ones. At 6 or 7 weeks, I did the same - tried to reduce medication. But no luck. I tried again a couple weeks later, then again at 9 weeks - no luck. So, I gave up. At about 12-13 weeks, I tried again - cannot remember why, but whether short of meds or what, I found that it worked!

This is very helpful. You used injectafer, correct?

Oozz wrote: ↑

Wed Dec 15, 2021 1:32 am

ViewsAskew wrote: ↑

Tue Dec 14, 2021 7:29 am

Oozz wrote: ↑

Mon Dec 13, 2021 12:30 am

After my 8th session, I tried weaning from .375 mirapex to .25 but was not successful. I’m going to retry 4-6 weeks after my last session.

They say it should work by 8 weeks AFTER it's all in. But I found it takes longer for me. I thought it didn't work when I had one of my first ones. At 6 or 7 weeks, I did the same - tried to reduce medication. But no luck. I tried again a couple weeks later, then again at 9 weeks - no luck. So, I gave up. At about 12-13 weeks, I tried again - cannot remember why, but whether short of meds or what, I found that it worked!

This is very helpful. You used injectafer, correct?

The first time it was Injectafer, and the second. The third, it was not - insurance wouldn't cover it. I still had success - a year of reduced symptoms. BUT, this last time, insurance wouldn't cover it, so I figured, fine, it worked last time. But, after 6 sessions, my ferritin was still under 200 (and the hematologist blown away) and I every attempt to lower meds was met with increased symptoms. So, he fought for me re. insurance - it took 3 months, but. I just started my series with Injectafer this last Friday!

At week 7 I tapered of medications and did not see any benefit. However, I have been told that it could take as long as 120 days to see any benefit. I don’t fully understand this concept and I’m paraphrasing, but… “after iron is absorbed from macrophages, it takes around 120 days for that iron to be released.” With that said, I will taper again every 3 weeks until week 17.

I’ve pretty much read every research paper about IV iron and there is still a lot that needs to be uncovered. I view this as a positive because there will likely be advances in this therapy that will allow us to use it more effectively.

there will likely be advances in this therapy that will allow us to use it more effectively.

Can't happen soon enough for me.

I stopped my medication again at week 10 and week 11, but, unfortunately, no improvement in my RLS.

Can still hope. Ann's took a very long time.