Iron transfusion & iron therapy

[venus12]

little background; have had rls for about 28 years (since pregnant with my first child) and have had it periodically over the years. About 4-5 years ago was its worst. lost so many weeks of sleep that i kinda freaked out- doc said went into some state from not sleeping. gave me kolopins to sleep- which i took for a week... they knowcked me out- which is what i was after. when i regained my brain function..lol.. i looked up those pills and decided it was not for me. I have refused all the meds for rls beucase i dont like what their function is and how it makes me feel. also do not want to augment- so i have been dealing with it. anyway- 4-5 years ago when that happened is when we discovered my low ferritin (i think 7) and we put me on iron pills.... within a month, i lost all symtoms and was symptom free for basically 4 years with just an occasional bout here n there.

fast forward 4 years and its back with a vengeance! after taking iron all these years and doubling it to two two pills a day (325mg ferrous sulofate) since january- my ferritin is only up to 16.

I do not have a pcp educated in rls, and he doesnt seem to want to be either. Last week he told me to take benedryl pills when i complained i hadnt slept in a week. i tried it for 3 night- and my rls got really crazy- then i remembered reading somethingon this site about avoiding antihistamines at all costs. called him and told him.. long silence on phone.. ? then he mentioned maybe i need iron transfusion and gives me a referral for a hematologist and neurologist if i want ( i am hesitant of a neuro because they basically just write scripts and thats not what i want)

I called the hematologist and they are closed for 2 days while they relocated offices. i have done some reseach though and it doesnt seem hopeful. everything i read makes me think they will not give me this transfusion, and if they do- apparently if they arent versed in rls, will give me the wrong kind??
ive also heard ppl mention iron therapy- whats that? the infusions?

I want to go in their armed with info- any help of real publications and things i could print to take with me?? thanks in advance

[ViewsAskew]

There is good research on infusions and there is a protocol from Dr Early - search for research from Johns Hopkins, Dr Connor, Dr Early, Dr Allen. I don't have but a minute, but we do have documents and info here in the board. Search on infusion and you'll find stuff - you may have to weed through some posts, but it is here....Sorry I don't have time to look right now.

[Polar Bear]

You may have seen other posts referring to this book because I recommend it at every opportunity.
It's is a great book for your own information and also to use when going to doctor appointments.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. These Authors are at the top of the league when it comes to the treatment of WED/RLS. The book covers all aspects of the disease and you should look for the Second Edition.
It can be found on Amazon.
It is easy to read and I have found it invaluable and used it to guide my GP who admitted he knew little about WED/RLS.

http://www.hopkinsmedicine.org/neurolog ... .html#iron
This link will take you to John Hopkins Medicine and if you scroll down a little you will come to a section on Iron Infusion.
I found it by doing a search on Google for 'rls iron infusion'.
There were many more, some were a few years old and at present it is reckoned that sufferers ferritin should be up around at least 100, and for some people it should even be much higher.... whatever it takes to reduce symptoms.

[venus12]

thanks will check both out

[badnights]

Re IRON INFUSIONS
Yes, try for it. Yes, hematologists are likely to get it wrong, so find out what the protocol is for WED first, and make sure he's going to follow it; if not, don't do. Though small deviations from the protocol are probably fine.

Dr Earley at Johns Hopkins, who developed and tested the protocol (with others) is willing to work with any hematologist treating a WED patient, but says he has had frustrating experiences with them because they are reluctant to deviate from the protocols that they know already for anemia etc; or, they remain unconvinced that you need an infusion, insisting on interpreting ferritin levels in terms of anemia, not in terms of WED, for which "normal" is very different. But the response rate for Earley's protocol is very high. A quarter of people experience no relief; 3/4 experience significant relief ranging up to complete relief for months or years.

The key differences are:

• iron dextran works, iron sucrose does NOT.
• low molecular-weight iron dextran has a very low risk of toxic shock, whereas high molecular-weight iron dextran carries a significant risk, so use LMW iron dextran
• each infusion is 1000 mg
• you will probably need followup infusions, spaced 4-6 weeks apart, until you begin to feel symptom relief and your ferritin level stabilizes.

that;s my understanding of it, but certainly do your own research. I imagine once you've got a hematologist on board, and if he proposes something other than Earley's protocol simply because he is more familiar with it, you can ask Dr Earley if it would work, or ask Dr Buchfuhrer if you can't get hold of Earley. (for Dr B see http://www.rlshelp.org).

It might also help to see the neurologist, they're not all pill-pushers. The neurologist might be able to convince the hematologist to contact Earley or to follow his protocol.

Other discussions :
viewtopic.php?f=5&t=8439&p=68352&hilit=dextran#p68352
viewtopic.php?f=4&t=8476&p=69120&hilit=dextran#p69120

[venus12]

thank you for the info.

[venus12]

Beth, is is written anywhere on johns hopkins or anywhere else that the dextran works, sucrose does not? Im trying to go armed with info but having a tough time of it. The one spot on johns hopkins that i can find on iron infusions just states" By delivering iron directly into your blood via the vein, an iron infusion bypasses the gastrointestinal tract, which acts to limit absorption of iron when iron is given orally. There are several different formulations of iron which are designed for intravenous treatment and are used for the treatment of anemia. There are two formulation of iron dextran, with the newer, low molecular weight (LMW) iron dextran (INFeD) appearing to be much safer than the older version of iron dextran, Dexferrum (Chertow et al. Nephrol Dial Transplant 2004:19, 1571). The other iron formulations that are currently approved for treating anemia include: iron sucrose (Venofer), iron gluconate (Ferrlicit), ferumoxytol (Feraheme) and ferric carboxymaltose (Ferinject). In a randomized, double-blind trial of 1000 mg of ferric carboxymaltose versus placebo (subjects just received the solution with no iron in it), the RLS patients who received the iron had significantly greater improvement in RLS symptoms (Allen et al. Sleep Medicine 2011: 12, 906). None of these patients had an anemia and their serum ferritin ranged from 5- 113 ug/l prior to the iron infusion. Twenty weeks after a total 1000 mg of iron had been infused about 35% of patients had still remained off of all RLS medications.

From clinical experience in using LMW iron dextran (INFeD) in RLS patients, we find that the maximum effect of the iron infusion may take as much as 4-6 weeks. As part of our clinical practice, we will repeat an early-morning, fasting iron panel about 8 weeks after the infusion to establish the new iron status. We may repeat another iron panel in about 2 months to make sure that the iron levels are stable and not dropping. " thanks in advance

[ViewsAskew]

If you search on it on the internet, you'll find research that does say it I only know because I had to find them for my doctor awhile back....but I didn't save them. I just did a quick search and found this:

http://www.medscape.com/viewarticle/704490

[venus12]

i went armed with info... was ready to have to fight..especially since the receptionist on the phone said they never had rls patients.. but to my surprise, the hematologist knew all about johns hopkins studies and put in for me to get the iron dextran LMW)!! she said i had a choice of a 7 hour all day dosage or several 20 minutes ones. I chose all day...

woohoo- i am pumped.. just have to wait for insurance approval

[Polar Bear]

Well done

[venus12]

she did ask to copy all my info but honestly- she was up on her stuff.. i was amazed. I am so used to having to school doctors, even my neurologist- who didnt know there were variations in iron. with that said- i gave in last week after all these years of refusing the meds.. i am now taking .125 mg of mirapex (1 pill) at night before bed and it actually works. i asked for the lowest dose and neurologist said to call anytime and he will up it.... but i have no intention- i want off it as soon as possible. this site rocks with all the info! Thanks everyone

[ViewsAskew]

That's pretty impressive!

Hope it helps.

[venus12]

it should. i really think my rls is due to the low iron/ferritin. 5 or so years ago.. i dropped real low and had a very bad 2 months.. once i managed to get it up again (with a ton of oral ferrous sulfate), i was actually fine for a few years, always taking it UNTIL i started having super heavy menstration (21 out of 30 days) due to fibroids/polyps in the uterus.. that went on for a good 6 months until i could get insurance- at that point, doc gave me a d&c and its helped alot with that problem, but cant get my numbers up fast enough.

[ViewsAskew]

So glad that you have experience with it. I've had an infusion, but it didn't help much. That said, my body dumped the iron so fast, that it's possible that it just wasn't high enough for long enough.

[venus12]

they will test me at the 8 week after point to see what the ferritin level is. I had the infusion this past tuesday. nurse blew 2 veins before they called someone else in and that person finally got a vein.. but ya know what? i didnt even care (even though my arms look like a junkies at the moment) I am just so excited to see if this helps