IV Iron infusions

[mapleleaf]

Good am all. I live in Canada and see a specialist who is very up on latest meds. and treatments. He was at an RLS convention this past June in the US and now it seems all the RLS specialists are using IV iron infusions to help RLS. I have a severe case and we keep hitting brick walls with the opiods and augmentation and severe pain in my shins. He is trying to get the head of hematology in my province to accept a written proposal to start letting RLS patients use IV iron infusions. At this time only anemics are allow the iron infusions. I have a low ferritin level of 34 ( to qualify my ferritin has to be under 50). So I have anemia but instead of a low hemoglobin I have a low ferritin level. Ferritin affects the production of hemoglobin through the brain, Its pretty difficult to understand all of the medical side and I apologize for my ignorance on that subject but you kind of get the jist of my predicament.
My question is for anyone who has tried the IV iron; does it help; are you off or have u lowered your opioid use. Before the iron treatment came up my next step is to go on methadone(which is something I am desperately trying not to start)
PLEASE HELP!! I am so so tired and fed up of this disabling disease; illness; syndrome!! I will come to the US if the treatments work!!

[ViewsAskew]

I have had three infusions. My serum ferritin was 8 originally. Before I tell you of my results, please know that the Johns Hopkins RLS docs have led the way regarding these. If you have some time, look up their research. If you are like me, you will not understand everything, but will learn a LOT!

One of the findings is that we do not all benefit from infusions. We may be missing a protein that is needed, as is one of our moderators. It also could be that some of us need a higher level than is considered safe. Just a guess on that one, but it makes sense given my experience.

I wrote extensively about my experiences. I have to run out the door and am limited in how much I can type now... if you have a minute, do a search on the word infusion - you will see posts related and see mine. Look for the ones by me. When I get back, given my relatively lousy memory, I will do my best to find the posts if you have not.

[Rustsmith]

I am one of those who does not benefit from increased ferritin levels, possibly due to the defective protein that Ann mentioned. I increased my ferritin levels from 42 to over 350 using oral iron, yet my RLS is still pretty much as bad as it ever was.

So, although many benefit from IV iron, increasing ferritin levels does not automatically result in an improvement in your RLS or the opportunity to reduce the dose of your meds.

[ViewsAskew]

Here is a link to one of the lengthy threads about my last infusion: viewtopic.php?f=4&t=9855&hilit=infusion

[badnights]

The Johns Hopkins guys have said that roughly 75% of WED/RLS patients benefit from the infusions. Those that do benefit, see a definite benefit. Those that don't benefit don't seem to respond at all. In other words, it's kind of all-or-nothing. I think Ann's story shows that it's not that simple, but she did see a clear benefit eventually.

[ViewsAskew]

OK - have a few more minutes today. One of the other things that the JH trials show is that each of us may have a different level we need to achieve to get relief. For me, I seem to need it around 175 to 200 for a 45-55% reduction in symptoms and needed medications. When it goes lower, I have not benefit. The first time, it was in the range only for a week to ten days. As soon as it got lower than 175 or so, the helpfulness started to decrease. By the time I hit 100, I had about a 10% reduction. By the time I hit 75, I had not help at all.

With each infusion, the levels stay higher for a longer period. It is about a year since my last one. Originally, I reduced medication by about 55 to 60%. Now, it is only about a 30% reduction. Still better than nothing, but definitely not a complete amelioration for me, at any rate.

[mapleleaf]

Thank u some much Anne!! All of this info is very helpful!
My RLS specialist is trying to present a paper to the head of hemotology in my province to get a go ahead. I am seeing my family Dr. tomm and asking if he can give me the iron infusions.

[badnights]

What province are you in? I've been trying to arrange an infusion. I live in the NWT. My doctor has referred me to a hematologist but I haven't heard anything and it's been months. I imagine because WED/RLS is not regarded as life-threatening. Let me/us know how it goes. Kudos to your doctor, I love him.

[mapleleaf]

I live in Alberta and just heard from my Dr. Yesterday and I can get the Iron infusions now!! Praise the Lord an answer to prayer! I have to get my feritin and hemoglobin done again and depending on where my levels are will depend when I get transfused. It may take as long as 9 months but to me that is no problem to wait as I have been fighting this awful RLS for 18 yrs! Do u know the Specialist I see? Dr. L Pawluk. If u feel like sharing your story I would like to hear how u manage your RLS.My family Dr. Was not comfortable giving me the type of iron infusion that is needed.

[badnights]

Pawluk is the guy I travel to see every couple of years! He said he would write a letter to my GP encouraging her to seek IV iron for me, and she has - I hope - made the referral to a hematologist.

So - the head of hematology in Alberta will now approve IV iron for WED/RLS - right ? I will ask my GP the next time I see her if that might have changed something for me. Also what the status of the referral is.

My problem is that my ferritin hovers at about 120, which is too high for most doctors to want to risk an infusion and possible iron overload. But Dr B says that if I was down to 50 or so and had one infusion which improved my symptoms, then symptoms returned and my ferritin was 120, he would approve a second infusion. It's mostly refused initially because insurance won't pay if ferritin is high to begin with. I told him I could make my ferritin fall below 50 by stopping my oral iron, but it would take 3 or 4 months, I'd guess, during which time symptoms and therefore medication needs would increase. Why should I have to go through all that? argh.

As for how I manage the disease - I tried (and augmented on) ropinirole and pramipexole. Tried gabapentin, it was ineffective on its own, tried it with codeine, also not good enough (and gabapentin made my moody and occasionally verging on suicidal). Tried hydromorph contin, it worked, but that began a new breed of sleep problems - the opioids have a strong alerting effect on me (and many other WED patients who post here). So I added zopiclone, and over the years, Lyrica (pregabalin) and trazadone. I use all three to help me sleep, and the Lyrica might help with symptoms a bit (doubtful). I take a break from the Lyrica two days a week, on which I take a long-release levo-carbidopa (a medication you do not want to take too often, because it's notorious for causing augmentation). I also have short-acting levo-carbidopa for breakthroughs, which I rarely use anymore because I also now have short-acting hydromorphone for breakthroughs - a tiny small prescription but it's been a godsend.

My hydromorph contin dose started at 12 mg, and crept up over a few years to 18 and sometimes 21 mg daily. Then I tried a gluten free and dairy free diet (how that came about was a string of coincidences (including a ripped-up knee), which I will be forever grateful for). And that diet - after about 3 months I was able to reduce back to 15mg, then over the next 6 months back to 9-12 mg. That was about 1.5 yr ago. I've been up and down a bit but I have stabilized even more lately - -

The diet is not just GF and DF - (I have an aunt with celiac but I my test was negative, but I had stopped eating it already for a few weeks when I was tested so jury's out as to whether I have it) - it is also very low in sugar, has lots of vegetables of a variety of types, include organ meats & fish, and as few additives as possible - no added sugar, chemicals, modified oils. It's a paleo diet, really, I think, verging on low-carb high-fat.

My biggest problem was that my circadian day had slipped so far out of sync with the sun that I was going to bed at 6 or 7 in the morning. I have a special accommodation at work that allows me to work odd hours, but it was horrid being alone in that building at night (except that I could bring my dog to work which was nice), and being unable to shop because stores were closed by the time I got up, and stuff like that. I tried many times to re-sync, unsuccessfully. Then last summer, I went out on a job where I needed to get up at 6 or 7 AM. My GP provided me with increased meds, so I took extra meds to kill the symptoms and to put myself to sleep, but after 4-5 days I had - amazingly - sync'd to the new time, and I was fine with my regular dose of meds, and I still am! I have to watch out for staying up late -- anyway that's a story for another post, I meant to just answer your question about how I manage.

[mapleleaf]

Thank you for sharing. I agree with you it should not matter what ferrition levels are at or hemoglobin...You have been diagnosed with RLS and from your history much like mine have tried soooo many meds. which do not help. Lyrica for me was a nightmare( memory loss, wt. gain, irritable) and it took me 5-6 weeks to come off of it completely! I will keep my Iron infusion story updated to help others know of my success with it or not. I rely on my oxyneo and oxycodon for breakthrough ! It is the only narcotic that can settle my legs and makes me sleepy too ( I am very careful not to take them if I have to drive anywhere and scheduled appts. around them.) Keep up the good fight, we shall one day be restored to a "normalcy" that each of us strives for.

[badnights]

we shall one day be restored to a "normalcy" that each of us strives for.

[mapleleaf]

Hi all ....I received a call from my specialist that I qualify for the iron transfusion program at the Royal Alex Hospital in Edmonton!!!! Yessss! Another answer to prayer!! Thank you Lord!! Now I will wait for them to contact me to set this up.
Beth/badnights I suggest your DR. try and contact Dr. Pawluk to see if this is possible for you.
Praying you get the help you need...

[ViewsAskew]

Hi all ....I received a call from my specialist that I qualify for the iron transfusion program at the Royal Alex Hospital in Edmonton!!!! Yessss! Another answer to prayer!! Thank you Lord!! Now I will wait for them to contact me to set this up.
Beth/badnights I suggest your DR. try and contact Dr. Pawluk to see if this is possible for you.
Praying you get the help you need...

Great news! Hope it helps.

[badnights]

oh mapleleaf I'm so happy for you!

do you know your ferritin and transferrin numbers from your latest bloodwork?