I’ve been here for a while reading & learning, getting the impression this is a very well informed serious & supportive community. You’ve helped me understand a lot…but am very aware there’s lots more to get my head around, so thanks for being here! now am about to have this IV iron, am feeling ready to see what insights you may have re my version of RLS & especially re how to prepare for this iron infusion - my hypersensitivities to pharma generally make me wary but am definitely willing to trial new meds
So, have been suspecting have had restless legs syndrome all my 70 years - secondary to infant onset lupus (with widespread neuro symptoms including cerebral + the usual secondaries inc Sjogrens, peripheral & small vessel vasculitis etc) + Primary Immunodeficiency Disease + spina bifida occulta + hEDS (especially severely affecting whole spine: facet joint syndrome responded pos to various body therapies + decades of periodic bilateral cervical & lumbar radiofrequency ablations, but negatively to all pharmaceuticals).
Over the decades, my RLS-type manifestations have been termed myclonic jerks & then clonus, but now my consultants are calling them RLS too. I’ve never been specifically treated for these RLS-like signs & symptoms, but I am benefitting a lot from heavy duty combined therapy pharmaceuticals for all my immune dysfunction illnesses. Also, over the decades, have proven to respond very negatively to all classes of analgesics except paracetamol & ibuprofen gel so have had to learn how to tough out multisystem pain
in 2019 NHS neurosurgery’s L.4/5 instrumented fusion went wrong, greatly increasing my degree of lumbo sacral scoliosis curve & rotation, with my RLS-like manifestations increasing loads alongside those of the peripheral neuropathy & also the L4/5 nerve root entrapment. then in Sept 2023 i had a big emergency bowel resection…followed at Christmas by a nhs fast-track referral to urgent gastroscopy re suspected oesophageal cancer. Alongside all that, my RLS-like manifestations have become so severe that I’m managing them 24/7. now, ever since Sept’s emergency bowel resection , every night am having to get out of bed & go downstairs for 2-3 hours settling things RLS down. I’ve been prescribed pregabelin & have a box of it here with a cautious plan to start ultra low dose, incrementally increasing etc, but due to the faster track oesophagus investigations my docs & I agreed my hypersensitivities to meds generally mean it’s wisest to postpone trying pregab until we’ve figured out what pharma etc can help whatever’s aggravating my oesophagus etc
Anyway, when referring me on that ‘2 week waiting’ cancer pathway, my GP ran a series of blood tests including those for anemia & iron deficiency - have had these over the years, with a history of border line results across the board. Well, all my anaemia, iron etc results are now officially significant enough for my GP to alert my gastroenterologist who immediately referred me for IV iron. I suspect all my docs think they had to resort to IV iron because gastroscopy found widespread oesophageal heavy bleeding, ulceration & stricture + swelling, polyps etc. …and, earlier in my life, oral iron meds have aggravated all my chronic inflammatory mouth to exit GI tract conditions.
So, here I am, hoping this upcoming iron infusion may at least somewhat calm down my RLS-like manifestations…& feeling very much in need of the caution being expressed in Joolsg’s recent post.. I’ve had so many disappointments re treatments for all my ‘stuff’ over the years, but I’ve also had miraculously positive results, so…am trying not to overthink what this iron infusion might do for me…and am very much hoping its side effects won’t aggravate me the way so many treatments have during trial periods
Thanks if you’ve managed to read this long post. Hope at least some of it makes sense to you. For sure I’m a complex case, even more so cause it’s infant onset, progressively debilitating & now am 70 and under Palliative Care considered clinically extremely vulnerable. So am totally not expecting to encounter anyone exactly like me, let alone to find an ‘answer to everything’
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All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. Do you meet all of these?
Yes, thanks: have learned this from you & been thinking long & hard about it all.. My consultants agree I do meet all of these, and my version of these is as per your list, so…and of course, my diagnosed neuropathies overlap with these, some aggravating these to some degree…
I have nothing i can suggest for you that might help. But i will say you certainly have more than your share of health issues going on you are a trouper. I hope you can find relief from the RLS that the infusion works. All the best.
You 2 + the others replying & liking my post are making all the diff to me…thanks very much…had been feeling quite shy about participating & posting at all! Now am beginning to feel less so. And am wishing you .+ everyone every best wish 🤝
On preparing for an iron infusion from what I understand and I am no expert on this so I would ask the doctor who will be doing it, is just to eat your normal meals and drink plenty of liquids and relax.
Have your ferritin and other iron indices checked 8 weeks after the infusion and not any sooner since they won't be accurate. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Do you know what your current ferritin is?
The pregabalin is the right medicine when your doctor is ready for you to take it. For people without all the complicated problems you have the beginning dose is usually 75 mg pregabalin [If you are over 65 and susceptible to falls beginning dose is 50 mg pregabalin. It will take 3 weeks before it is fully effective. After that increase it by 25 mg pregabalin every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."
Of course follow your doctors orders especially since you are sensitive to medicine.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
your comments re prep for the infusion make sense to me & are familiar because this is what I do before 5he other types of infusion my consultants have me on long term for other issues.
Am glad you recommend this Mayo info because I have been studying it and it’s seemed really good to me!
Your advice re pregab is aligned with what my docs & I have planned, so that’s extremely reassuring
Yes, I have both my historic ferritin results & results from the series of tests that’ve been run recently. It’s these current results combined with the anemia panel results etc that’ve qualified me for this NHS Iron infusion (along with the bleeding oesophagus etc etc). Last night while I was up calming down the RLS etc I started putting together a table of all the blood results most relevant to my anaemia and as usual some of the U.K. medical units are diff abbreviations to the U.K. but, what ever the abbreviations, my stats fit with official U.K./NHS criteria, these diffs between USA & UK medical terminology annoy me greatly! I use Mayo, Cleveland Clinic & Johns Hopkins & the wonderful National Org for Rare Disorders website + other great USA sources a lot so am always having to double check this sort of thing, & today when I watched Joolsg’s video link to the official explanations of theses new RLS guidelines, I ran into this medical abbrev prob yet again. Am sure you’re all familiar here with this prob. I was born & raised in Philadelphia, so of course I run into this prob when talking to my family & friends back home about healthcare too
Your self help/lifestyle advises all make sense to me too, thanks…there is loads of trial & error in all aspects of our care
Am very grateful to you for making time to give me such a comprehensive reply: helps a lot
Hi, welcome to our group. Despite having numerous challenging and very complex conditions to deal with, you are very organized and logical about it all. I commend your clear and scientific thinking through difficult emotional health problems. Best wishes and we are rooting for you! 🤗
You are welcome, and very deserving of a community to support you. 💙 I can sense that you wish to control some/any aspect of these illnesses through knowledge and documentation. Otherwise it may be overwhelming and defeating! Again, good for you. And I enjoyed your Tagname thoroughly...Barnclown! It made me laugh. Teresa
😆 it’s you & me laughing now Teresa! & I love your community name! How’d that come about? Mine is because we converted the barn we’ve lived in 30+ years…& I still fit my childhood nickname, Coco (the clown).
& you’re right: that’s the main way I try to understand/manage these things…most docs don’t have time to discuss & explain much about either our conditions or our meds, no? I’ve learned & benefitted a lot from encountering patients who’ve done better by getting into the knowledge & documentation side of their health…which I guess is what turned me on to doing same: it’s the results that count, and, over the years, mine have made a big pos diff to my care & well-being 👍💞
Sorry to hear you have the awful restless legs. Mine started about 15 years ago. I have had bouts of R/S for months then I can go for a year with nothing at all. They came back around 6 years ago when our house was in upheaval due to hubby putting new kitchen In himself. So 3 months of agro. I couldn’t sleep it would start at 4ocloock in the afternoon and go through until about 6 in the morning. I had an iron infusion which was brilliant. It didn’t stop it all but calmed it down. I started on pramipexcle 88microgram it really helped and found I didn’t even think about it. Until I started getting profuse sweats. My gp came up with the idea it was the pramipexcle that was causing it so I tried to stop them. Two nights later I was awake all night. I really couldn’t believe it would come back that quickly. To sum up yes definitely go for the iron infusion and have a look at what you can take for it. I have Lupus, Sjogrens, Fibromyalgia, restless legs, Addison’s disease to name a few. Good luck
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
To come off pramipexole, reduce by half of a .088 every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thanks Sue for all the info. I’m very sensitive to so many different medications I am really bad on pregaberlin and gaberpentin sorry spelling. I thought the doctor had looked it up and everything safe. I should never believe doctors. I am ok again now but trying to get rid of the profuse sweating. It’s tough when everything is against you. I’m so allergic to yellow food colour and that is in so many pills
If anyone has any thoughts on sweating I’m so looking for help. I think my rheumatologist will help with my restless legs she was so brilliant last time
If you can't use pregabalin nor gabapentin there are 2 other possibilities:
1) Dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
2) A low dose opioid like buprenorphine or methadone. These last a long time as opposed to most of the others that last only 4 to 6 hours and have to be taken that often to prevent mini withdrawals.
Thanks so much Crystal! Your news feels very encouraging re IV iron…especially knowing you’re managing immune dysfunction illnesses like me. I wonder what proportion here is also.
All those decades before my RLS recently segued into mega, I could just tolerate those mild symptoms because my rheumatologist seemed unconcerned by them & I totally respect & mostly trust her. Besides they were so fleeting & intermittent: ie nothing compared to the constant multisystem agony lupus & co + hEDS + the treatment resistant persistence pattern infections Immunodeficiency Disease were inflicting on me - but in a way I was lucky that it was all so early onset I knew no different.
So my RLS coming on so severely this late in life is making me summon up all the survival tools of my lifetime: this RLS is quite simply horrific…and finding you good folk here is literally helping me keep any sanity I’ve still got. Fortunately my palliative Care Team is ready to step up as needed & my husband is a lovely person + an early onset-Crohns Disease surviver, who knows how not to fuss over me, but help as needed instead, AND most important, he makes me laugh, eg we call my RLS Flying Feet & Leaping Legs Syndrome (it’s not at all funny, really, but health ‘funny bones’ have definitely helped me survive a lifetime of all this into my 70s)
Thank goodness for your clever kind GP…& for this forum: am so glad Sue has replied re your probs with pramipexole: she is such an expert & explains this stuff so well. Before joining this community I was so ignorant re the science of RLS that I didn’t even know Sleep Scientists are at the forefront of studying & treating it!
I am a 65 y.o having had RLS for about 12 years. I was severely impacted by pramipexole augmentation, If you’ve been reading on here you are probably aware of the debilitating effects of coming off this medication. I initially had an iron infusion due to low Ferritin levels one year ago after severe withdrawal from the med. It took awhile but for most of the year my symptoms—beside insomnia have been manageable with medication. I am still taking gabapentin 1500 mg but felt pretty well controlled. Last month i started having Whole body RLS with symptoms in my back, arms and torso similar to what i had during my withdrawal from pramipexole. I believe this was because of my RLS getting worse. So I asked my Physician for another iron infusion. It has only been a few days. My ferritin was not that low (above 100) but based on my symptoms getting worse— i am hoping that in about a month or 6 weeks my symptoms will get better as this was my result last year! Some people need a higher Ferritin level than others to achieve management of RLS and I think I am one of them! I am hopeful that this will be a good result for me.
My heart goes out to you for your health conditions! So far this has been a real struggle after augmentation but many in this forum have helped me and have said it takes at least a year to recover. Many of my doctors don’t understand what I am going through but thankfully i have a physician that listens to me! I am most thankful for her ordering an iron infusion when my Ferritin was 150. Most would say I don’t need one!
If you do get an infusion I wish you success! I believe it has been helpful to me!
Hello Aujamw, & thanks…+ oh dear: yesterday tapped in what felt like a good reply to your very interesting account re how treatment has gone + for your encouraging, kind words …& then this reply simply disappeared (no doubt I pouched the wrong part of my tablet 🙄)…so here I am, trying again
The more I read this community’s discussions + study the lasted published lit etc recommended here, the more I sense am lucky my RLS is being investigated & treated now, rather than earlier when these augmentation issues weren’t understood. Am relieved you’re in the care of doctors who are listening + stepping up to tailor your treatment.
Hope you don’t mind a few questions …no hard feelings if you’d rather not answer these, though:
Do you live in the USA.? which type of doctor is leading the RLS aspect of your care?
Do you mean ferritin level serum? & Is it your 100 ferritin level serum that’s 100 ug/L? Here in the U.K.ferritin level serum seems to be designated as ug/Ls, no?
Are your Transferrin level & transferrin Saturation measured & considered relevant?
Are you diagnosed with any immune dysfunction illnesses?
Wishing you every best wish 💞 & hoping you’ll let us know how things go
Well done for explaining your complex RLS situation to this community. You are right about the RLS forum....it is is a most useful, understanding and experienced group of contributors who have helped me in many ways. One of those ways is to allow me to "educate" my own doctors on RLS treatment etc.
Your case explains why RLS is such a serious condition because even with all your other very serious conditions you are still over awed by it's quite unique aches 7 pains.
Keep posting and good luck on your forthcoming treatment
Gosh, thanks Davchar: means a lot! I think you live in the UK…which type of doc leads your RLS care? Are you diagnosed with any immune dysfunction illnesses? Because what you’ve said re teaching docs hits the spot: whether my treatment has been/is nhs or private here over the decades, am always having to remind & even teach all my doctors about my version of all my conditions - so I keep up to date with Royal Society publications & lates officially published Lit & try to be tactful when making ‘comments & suggestions (hard when they really should know better). But, hey: it’s a collaboration, so….anyway, you are too right: so far, my docs rather blasé reaction to my RLS symptoms is surprising even an old war horse like me!
yes I’m in my 70s with early onset so I don’t know any life different I thought it was how everyone felt. It takes it out of you as you get older. It’s more difficult to manage. There is just me and my husband who manages to cope with everything. Just had surgery on my right hand that’s been so difficult. As I’m right handed. I will have my left done when this one is healed. It’s carpel tunnel so not to bad
Thanks for explaining, Crystal. We do have things in common! Autoinflammation loves flaring alongside recovery from surgeries of any type, oh my: as much as another can, am imagining coping with that one-handed, glad your husband is a ‘copper’, one of the good guys💞
PS. In case you can manage another one-handed reply:
Which type of consultant leads your NHS RLS care?
Is your ferritin level serum measured in ug/Ls?
Are your Transferrin level & transferrin Saturation measured & considered relevant?
Hi yes I see a dr Hall at Addenbrokes. The ones at Bury weren’t that helpful. I had had weekly fevers of 40 degrees and they couldn’t figure out why after 25 years I got so fed up I asked to go to Addenbrokes. She saw me for a couple of years and came up with nothing so she said see you in a year. I wasn’t having that so found a Dr Kaul at st Thomas hospital in London. He had seen the fevers before and prescribed belumimab which works. So dr hall is good for spotting I had low iron levels and prescribed an iron infusion which worked. I’m now headed the same way but this time the are aware of my history
My Goodness, thanks: I’m with Dr Hall! She’s been my lead consultant for the autoimmunities since 2011…what a coincidence…my other lead clinic is Immunology there for the Immunodeficency Disease. My other clinic are at West Suffolk & Ipswich - it’s my gastroenterologist who has prescribed the IV Iron. & it was Dr Hall referred me to Paliatve care recently. My experience of Dr Kaul is good - he’s been part of the Inspire studies we’ve been producing under Dr Melanie Sloane. Am relieved he stepped up to help you
Did you get to see dr hall at the lupus uk meeting in Cambridge recently she gave an amazing talk. If not I think it was all videoed and should be on lupus uk site
Yes, am sure it’ll be videoed…it’s great you were there…am deeply envious….am so glad the event was good…am trying not to feel too upset that am now too generally & unwell & frail + disabled (grrrrr) to attend these…Shelagh C. RIP was one of my best friends ever, & I attend all meetings + events she organised during her time as Chair ..I miss her terribly. my first of these big big events was just after Hall took me on: Hall’s lecture absolutely bowled me over…at our last appt I reminded her of the Jackson Pollock-like squiggle that was the v firstimage she projected, saying: this is my professional life. Hall is my hero big time, but she knows no one is perfect, even her 😉..I could ramble on!
I do know how you feel. I am finding it harder and harder to cope. I dread the time I just can’t do it anymore. Dr hall has changed so much during the time I have been seeing her. She seems much more compassionate and understanding of what it is we go through on a daily basis. The Addenbrooke’s my chart is just brilliant as I now get her letters and results of any blood tests brilliant take care
Am so glad to meet you, Crystal, even if only briefly. Just wish none of us have to live with these dreadful issues. Sorry been slow to reply: shingles was discovered in my left eye early this week, which has disrupted things 😉
I so agree about MyChart: makes coping with it all the crucial bit more bearable! That’s interesting: think I’ve noticed this shift in how Dr Hall relates to us too…unfortunately she’d been a bit on the slow-side interpreting & treating a dire aspect of my lupus-related issues & lockdown prevented me seeing her which meant that, even photos sent to her on MyChart, it took my West Suffolk Hosp. Dermatologist to raise the alarm when I saw her in person, & she fast track referred me to Addenbrooke’s neurology for neurophysiology testing…. But once Hall saw those test results & more photos via MyChart, she gave me an immediate tele appt, explained the Dx & put me on the specialist scleroderma-protocol treatments I desperately needed. When we talked she actually said ver gently: that must be extremely painful…her compassion came through so strongly that, for the first time in my 70 years, I wept while she quitely gave me a mo to pull myself together. I thank her everyday for that, & all th3 other ways she has increased the quality of my life over the past 13 or so years.
Yes I fully understand just what it’s like to pushed aside. She wasn’t keeping me informed and it felt like she had given up on me so I went to dr Kaul Which turned out really well. Dr Hall hadn’t seen anyone with Lupus having recurring fevers but Dr Kaul had and knew how to treat it. As soon as she knew what the problem was she was really good in treating it. So I’m now fever free but not pain free sadly I think she is looking into it but again not being kept informed. I think she just is so stretched that the patient is the last to know. I hope you get some relief from all the complications we go through. As you do poorly the last thing you need is to have to fight
Still going left handed as I have had the stitches out so it’s painful again. Take care of yourself love 🥰
Hi Coco I haven't had an iron infusion my ferritin is over 100 and I take iron bisglycinate to keep it up there .I replied as we have "spoken " before and I recognised your name and pic.Its quite a few years ago now and I can't remember the context but I have autoimmune conditions so probably in connection with that.However i do recall that you helped me during that time with your vast wealth of knowledge and kindness Good to have an update on how you're doing although I am sorry for all you have to endure.Take care and good luck with your infusion I hope it helps your RLS
😯👋👋👋👋 💞Oh PIPS: lovely to meet you here too (although wish RLS weren’t in our mix). Thanks for remembering & reminding me…having been some help to you does boost my morale a lot! Now you’re helping me & am very grateful…hope you don’t mind a few questions:
What type of NHS doctor leads your RLS care?
Is your ferritin measured as ferritin level serum, with measurement in ug/Ls?
Are your Transferrin level & transferrin Saturation measured & considered relevant?
Is your transferrin saturation measured as a % & considered relevant to your RLS?
Coco, I’m so sorry for the struggles you have been enduring! It’s more than anyone should experience. I’m hoping the upcoming iron infusion helps your symptoms.
👍🤝You’re spot on to be considering diet-might play into this, thanks. Lucky for me, my mother raised me to eat a healthy diet (she was a big fan of Adelle Davis back in the 1970s) cause my immune dysfunction & connective tissue disorders being mostly childhood onset (including what seems to be a type of MCAD involving lots of hypersensitivity especially to foods of all types + food residue) has meant a long hard series of decades under gastroenterology specialist dietetics & immunology investigations. We know I’m not coeliac, but even so gradually over the years I’ve ceased to tolerate gluten. Indeed, 6 years ago gastroenterology had to put me on a long term Elemental Diet very similar to that usually prescribed to Crohns & short bowel patients short term. I could go on…but am sure that’s enough detail 🤷🏼♀️
I have recently been eating lambs liver which is very rich in vitamin D, natural vitamin A, Heme Iron (most easily absorbed) and many minerals. I have noticed an improvement in my RLS whereas I didn't notice anything from taking iron tablets. A few things to be aware of if you are having iron infusion.
Author: Jess Jamieson
A group of women in Australia are collectively on a mission to help raise awareness to others of the dangers of iron infusions, after suffering for months to years with chronic hypophosphatemia, which has left them with long-term disabilities.
When you think of iron infusions, you think of vitality and a quick fix, but not too many of those administering infusions disclose, or are educated on, the hidden dangers of the iron infusion itself. Up to 92% of people can develop low phosphorus from iron infusions, which can lead to months of debilitating issues and temporary disability.
Iron infusion therapy is used to treat iron deficiency which is not responding to the first-line oral iron therapy. However, studies show it can also cause severe renal wasting of phosphate resulting in severe hypophosphatemia in some patients.
Despite the growing number of case reports, this side effect is not well-known to healthcare professionals. The product labeling information sheet does mention that hypophosphatemia can be a side effect, but also says that this side effect is usually transient and asymptomatic.
There is a growing number of people who develop severe, symptomatic, and prolonged hypophosphatemia after an intravenous iron infusion for severe iron deficiency.
The symptoms of hypophosphatemia depend on its severity. Some people with mild hypophosphatemia may have generalized mild to moderate muscle weakness or body aches/pains.
Severe hypophosphatemia can cause muscle pain and bone pain which can be mistaken for iron flu, muscular weakness, an altered mental state such as experiencing confusion or irritability, numbness, or reflexive weakness, difficulty breathing, or shortness of breath, and seizures.
Severe hypophosphatemia can also result in coma and death if not treated. If you’re experiencing symptoms of severe hypophosphatemia, it is recommended to get to the nearest hospital as soon as possible and have your fasting serum phosphate levels checked.
Going forward:
- Clinicians prescribing iron infusions should be aware of the common side effect of hypophosphatemia, which could be mild, moderate, or severe.
- Patients receiving iron infusion should be educated concerning this potential side effect.
- Pre-existing vitamin D deficiency, low calcium levels, low phosphate levels, or raised parathyroid hormone levels may be risk factors, and these should be tested, evaluated, and corrected before administering intravenous iron.
- Patients may require phosphate and active vitamin D (calcitriol) replacement along with monitoring for a long period after iron infusion-induced hypophosphatemia.
- Every incident should be reported to the Therapeutic Goods Administration (TGA) so that the true prevalence and management thereof can be ascertained.
Sources:
- E Ifie, S O Oyibo, H Joshi and O O Akintade Symptomatic hypophosphatemia after intravenous iron therapy: an underrated adverse reaction. PubMed doi: 10.2147/TCRM.S243462
- MA Libre, SS Karkare, and N Hadker Hypophosphatemia Associated with Intravenous Iron Therapies for Iron Deficiency Anemia: A Systematic Literature Review. PubMed doi: 10.1530/EDM-19-0065
WOW! Goldy, this is exactly what I hoped someone to give me re potential risks: am extremely grateful. Do you also know how current dosage guidelines re ‘oral iron-resistant IV iron treatment for anaemia’ compare to doses used in ‘IV iron treatment for RLS’?
Here I am, having hauled myself out of bed, downstairs in the kitchen reading your reply during my usual 2-3-ish hours @ 1-3am-ish each night calming the RLS down …glad to meet you awake down there…am a DES-Daughter (living with side effects of 5 months’ daily in utero exposure in 1953 to the internationally notorious endocrine disrupting first synthetic artificial oestrogen: diethylstilboesterol (DES)) and the damage done me before I was born means i too would be very happy to find a non-pharma treatment I can tolerate despite my mega hypersensitivities to pretty much everything pharma & non-pharma…I understand in utero DES exposure has been as great in Australia as it was in several other countries including the USA, where I was born. My immunology lead consultant thinks my DES exposure + my genetic predispositions are probably responsible for my immune dysfunction comorbidities…which means have always been cautious re pharmaceuticals
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Why does the majority on here feel getting an iron infusion is horrible??? Have you ever had one??? I have and they are not bad!!!
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