2 nights with no restless legs

[Jade1998]

After suffering with severe RLS for the last 6 years (I'm 22) I have finally been referred to a neurologist! He was fantastic 👏 He has started me on Gabapentin 300mg at night. second night in and NO restless legs. He is also wanting to do an MRI to see if there is anything that could explain my rls such as spinal damage. I am finally starting to get somewhere rather than going in circles with DRs. No more parkinsons medication for me 😁 Hope you all are well 🙏

[LotteM]

Thanks for posting, Jade. Long may it last so that you can live an as normal life as possible. And who knows, maybe in 10 years from now the cause is identified and a real cure available. Always 🤞🏼

[Jade1998 in reply to LotteM]

Thanks 😊 I really hope so!

[Madlegs1]

Great news!👍

[Jade1998]

Yeah I've had my iron levels checked 3 times this month (by 2 different Dr's and my neurologist) and they are happy with the levels. I don't know the exact measurements he was going by but for example (don't quote me on this 😅) 'normal healthy level is 30 I was 35 and he wants to try to get it to 70' so I'm also taking ferrous sulphate 200mg BD. To also see if it makes a difference but I have tried that in the past and it didn't help & I hated taking ropinorole so I'm glad he has tried something different. I'm sure the MRI will show nothing but when he was doing joint reflex tests on my legs they were quite strong and that's the reason he wanted to do MRI but he said if nothing shows he will put it down to young limbs 🤣

[Ranjits]

Iron supplement should it be taken in morning or evening

[Jumpey]

I'm so pleased for you.x

[Hidden]

Manerva sorry to just ask, but could you clarify for me please, is it a double dose every other day or a single dose every other day?

I was under the impression that rather than take one tablet once daily for best absorption rates I should take two tablets every other day.

[Hidden in reply to Hidden]

Yes you're right, two (daily) tablets, every other day. That's double the dose, but not as often.

[Jade1998 in reply to Hidden]

I've been prescribed 1 tablets twice daily. Should not be doing that? I work in a pharmacy as a dispenser and I've never seen variable doses being used on stand ferrous sulphate 200mg to increase iron levels or being using as a daily supplements. only on combined iron supplements such as ferograd-folic and ferrous fumarate 210mg I will check with the pharmacists when I finish lunch. As my doctor didn't mention skipping a day.

[Joolsg in reply to Jade1998]

Taking iron every other day raises levels faster. Hepcedin blocks iron absorption but taking every other day fools hepcedin. Several studies have proved this. As Doctors in the UK know zero about RLS, we have to research this condition ourselves.

[Hidden in reply to Hidden]

Thanks for clarifying Manerva. That’s how I take mine now.

[Jade1998]

Thank you for you reply! That's really helpful. I will take a double dose every other day and see if that makes a difference when my next blood test comes 😁

[Merny5]

This is wonderful to read!

[WideBody]

I have read this study and I feel it is missing a bit of information. First let's look at the results. "The increase in ferritin in Group I was significantly higher than those in Groups II and III " If our goal is to increase ferritin then clearly twice a day is going to be most beneficial. The problem that accompanies group one is gastric distress but what if you don't get or have gastric distress?

The best way I have found to deal with the gastric distress and constipation is to take iron properly. Always take iron on an empty stomach, nothing to eat two hours before or one hour after. (It's harder than it sounds) Also take iron with vitamin C to improve absorption. Vitamin C was NOT mentioned in the study only that iron was taken on an empty stomach. (I have the study 10.1111/imj.14766 )

The next issue is only one marker is being monitored. I truly believe that Transferrin Saturation Percentage is the more important number because it is looking Iron Stores (remember, Iron Deficiency Without Anemia). That can only be done with a morning fasted full iron panel. (Please don't supplement before this test, it will skew the test.)

Another marker that needs to be monitored is Vitamin D. I believe there is a correlation with low vitamin D and low iron. Vitamin D is known to block hepcidin which blocks iron absorption. Mine was low. Did the people in the test have normal Vitamin D levels? Or were they low. Supplementation could have improved absorption.

I also disagree that it is hard to raise ferritin above 100. Mine was 30, I got an infusion. 8 weeks after my infusion my ferritin was 114. At this point I KNEW iron was my issue. I did iron twice a day for 4 months and my Ferritin was 270+. I have test next week. It will be interesting to see how quickly ferritin falls. I was also supplementing with Vitamin D (10,000iu), my Vitamin D went from 24 to 76? roughly.

BTW, I did get constipation from twice a day. The doctor recommend 650mg of Ferrous Sulfate ONCE a day. That fixed the issue.

From my records, years ago. I got my ferrtin from 7 to just over 200, it took one year of oral supplements (325 mg once a day) . BTW, it did absolutely NOTHING for my RLS. There I was with a ferritin of 200 and big time RLS! The nurse told me to stop. It took 18 months with NO iron supplementation for my ferritin to drop from 200 to 30.

TL;DR I took oral supplements everyday for a year (325mg once a day), got a ferritin of 200. Did nothing for my RLS. Got an infusion my ferritin was 114, best thing ever for RLS.

I think the goal of oral supplementation is to see if iron works at all, the best way to do that is to maximize iron in the blood ASAP. If you have gastric distress, then make sure iron is taken on an empty stomach with a little vitamin C.

Also when taking iron, it is probably better to do at night when the brain needs it the most. Dr. Earley mentioned that in his talk.

Good luck!

[kicker2 in reply to WideBody]

"I truly believe that Transferrin Saturation Percentage is the more important number because it is looking Iron Stores (remember, Iron Deficiency Without Anemia). " What percentage are we aiming for?

(My Kaiser doc wants me to take ferrous sulfate 2-3 times/day for 1 month. Then she will retest my blood. Does taking this form or gentle iron raise the Transferrin Saturation itself? )

[WideBody in reply to kicker2]

According to Manerva's excellent documentation. sciencedirect.com/science/a...

Sorry for the cut and paste. I thought it would be easier.

Section 8.3

8.3. Start with IV and not oral iron for

a) Adults and children with moderate to severe RLS: if there is a medical contraindication for use of oral but not IV iron.

b) Adults (18 years and older) only if any one of the following are present:

1) Serum ferritin 75–100 μg/l (or, if serum ferritin is elevated due to the presence of inflammation, then treatment with IV iron should only be considered if transferrin saturation is <20%.)

2) There are significant systemic comorbidities that might interfere with oral iron absorption (e.g., inflammatory conditions, rheumatoid arthritis).

3) There was a prior failure with oral iron treatment.

4) There is a clinical need for a more rapid symptom relief than is likely to be achieved with oral iron.

Good luck.

[kicker2 in reply to WideBody]

Great info... Thank you for laying it out like this. My Kaiser doc did say that iron infusions come with a risk. What risks is she referring to? (I didn't pursue this question with her... yet.)

[WideBody in reply to kicker2]

Anytime you put something foreign in the body there are risks. Although very small the risk of anaphylactic shock it the primary concern. They do a small injection first and monitored me for an hour afterwards. Remember the reason for the infusion is to inject a superhuman dose of iron into your system. For me that came with a whole lot of emotional ups and downs. (OMG, it's work, crap what the heck is wrong). I saw benefits for 6-8 months from one infusion. Then since I have been supplementing orally, I seriously doubt I will need an infusion again.

I saw improvement in my RLS up to a ferritin of 200. After that, not so much. My plan now (according to my physican) is to stay at 200+ for a couple years until I fill up my stores. However, I will be testing my iron probably for the rest of my life.

Let me also say, if you are truly deficient in iron, the benefits will be so much more than RLS. Trust me, in so many areas of life. My hair is growing back (just one example).

[kicker2 in reply to WideBody]

Wow... super interesting the emotional part! 1. To clarify, the infusion brought you up to 114. RLS improved. Then oral supplementation raised it to 200?

2. "Until you fill up your stores"... Are you talking about Transferrin Saturation? How high should this be?

[Hidden in reply to WideBody]

Hi widebody, thanks for this, You give a good critique of the study. You're quite right that it is a limited study. Another limitation which may be relevant is that it's a study of iron supplementation for Iron Deficiency Anaemia (IDA), whereas the aim of supplementation for RLS has a different purpose.

Something that has to be remembered is that the conclusions of such studies are based on statistics, NOT on the experience of individuals. There is no predicting how anything will actually affect any individual.

As an example the statistics for augmentation due to 0.5mg pramipexole state that 7% of people taking it will suffer augmentation in the first year, 14% by year 2, 70% by year 10. This doesn't mean any single person will get it in the first year, some may last more than 10 years, and so on.

Hence, for example, if you don't suffer constipation from ferrous sulphate, that is your individual experience. It is NO predictor of whether others will suffer it or not. Statistically the chances are quite high for ferrous sulphate e.g. whereas for ferrous bisglycinate, the chances are lower.

Ferritin can be raised above 100, that's true. Statistically, it is known that the absorption of oral iron gets more difficult when ferritin is above 100. This is why IV infusions are recommended. If oral iron easily raised ferritin even when it's above 100, then why bother with an infusion?

You can disagree with this for yourself, but statistically, you cannot disagree.

The reason is that hepcidin prevents absorption more at higher levels of ferritin/transferrin sat (TSAT). This what it's supposed to do, otherwise iron overload can quickly happen even without oral supplmentation. Haemochromatolsis is a condition where this happens, it is a genetic disorder and is very serious, debilitating and potentially fatal.

I note that you suggest that you raised your ferritin using oral iron when it was above 100, but firstly, that's your individual experience. Secondly, I note that you had already had an infusion.

Referring to the study, you're correct in saying that the conclusion was that taking iron bi-daily was less upsetting to the gut, which IS a problem for many. However, you will at least notice it also concludes "A low-dosage of iron treatment every other day may be used in the place of providing iron once or twice every day with similar effectiveness "

You're right in that the study said ferritin increase was higher in Gp 1 than the other Gps, but also note it says "Ferritin significantly increased in all three groups".

Also it states "Gastrointestinal tract (GIS) side effects were also significantly higher in Group I in comparison to the others"

"Significant" in this context is a technical term based on probability theory and in simple terms means that any difference between two sets of results is MORE than you'de expect by chance alone.

Overall however, I accept that I have to be corrected. Taking oral iron every other day may not increase absorption, but it doesn't decrease it either. But I will continue to recommend bi-daily doses.

The aim of iron supplementation in IDA is to increase Haemoglobin levels, not necessarily ferritin levels and can be done quite quickly because the IDA means that hepcidin will be less likely to be released.

Not so when IDA is not present.

Ferritin doesn't increase quickly in any event, even after IV infusion it may take months to raise it.

As regards transferrin saturation (TSAT), this is NOT a measure of iron stores, this is incorrect. Ferritin is the measure of iron stores or, to put it another way ferritin IS stored iron.

Transferrin is how iron is transported about the body. If it is less saturated then it means there's less iron available to be transported, if it is highly saturated, it means there is too MUCH iron. A TSAT of less than 25% suggests iron deficiency, a TSAT above 45% suggests iron overload, perhaps haemachromatosis.

There is a relationship between TSAT and hepcidin. Hepcidin helps prevent TSAT going over 45%.

Importantly then a low TSAT is an indicator of iron deficiency, a TSAT of over 45% indicates it is NOT SAFE to have an IV infusion.

It has, again, been shown that statistically, ferritin is a better indicator. of brain iron levels, not transferrin.

I usually try to restrict my suggestions to those than can be verified by statistical studies rather than my personal experience, although I may use my experience to illustrate a point. I also try to interpret the meaning of specific studies in the context of other studies.

Knowing what the "chances" of a particular outome for a specific action can enable people to make a choice. Individuals will vary of course, but not greatly.

I may have not have it got it quite right in the case of bi-daily iron but normally, it is better to make make general suggestions to people based on general findings.

I agree that the study I referred to didn't mention vit C etc, which in some respects means it's incomplete. I'm sorry to say, that the information you've given is incomplete and/or inaccurate and at least partly based on unreliable personal experience.and feel I need to point this out to others.

[WideBody in reply to Hidden]

Hidden I appreciate all that you do. You are so prolific in this group I m beginning to think you are an advanced AI bot. The time energy and thought you put into each unique reply is simply astonishing. Please don't think I am asking you in anyway to change what you are doing.

What I am trying to accomplish is an open discussion, mainly so I can learn. For goodness sakes your teaching everybody else, I may as well learn too. I have learned quite a bit. (I stopped our last discussion on when to stop supplements prior to testing because i realized the only document I have that states that without explanation is the Clinical Consensus. I have nothing else. I just repeated verbatim what I read. I still plan to stop out of an abundance of caution.)

Nothing about my RLS is the same as anyone else. However we can agree on a couple things. If someone is suffering from RLS, the first place to start is a simple morning fasted full iron panel. The goal is to have a ferritin of greater than 100, or sensations of RLS stops.

The least invasive way to do this is with oral iron supplements. I tried quite a few over the counter medications for several months (6 months, two tests). With no luck, my ferritin was a 7. I was prescribed liquid ferrous sulfate, then it was game on. Within one year, no infusion, no special instructions, I took 7ml of liquid iron in the morning mostly before my coffee and in one year, my ferritin got to over 200. This did NOTHING for my RLS. I was told to stop supplementing and it took 18 months to go from ferritin 200 to a ferritin of 30, with no supplementation.

When my ferritin was 30 I got 5 infusions of iron sucrose 200mg each. After the last infusion I waited 8 weeks and got retested. My Ferritin was 114 and RLS was doing fantastic.

So I think we are trying to treat different things. If the goal is to get your ferritin up let's look at the results in DOI 10.1111@imj.14766

All groups stared at 4.5 to 4.7 ferritin after one month the first group got to a ferritin of 29, the other two only 19. So clearly the group taking iron every day is increasing their ferritin faster. It is also very clear that this is gonna take a LONG time.

You are absolutely correct iron has side effects... so do DA drugs and alph-ligands. Fibre pills and stool softeners are certainly welcome.

So in conclusion. If you have RLS it is important to test iron levels. If iron levels are low supplement. If you are supplementing it is best to test periodically to see if 1) the body can absorb the iron and 2) iron is not going too high. Finally it can take a really long time to see effects if supplementing orally with iron.

Take care, sorry it took so long to respond. (life, work)

I hope you can read my writing. Sadly I was taught to read and write "American" as opposed to your sensible "English"

Regards,

chart

[LorraineMcfly55 in reply to WideBody]

Why would the iron infusion work so much better for RLS even though your ferritin was just over 100 whereas it was much higher previously but did nothing for you? Very interested in this...

[Matfeb]

Awesome! Same here... Gabapentin has been a miracle drug for me too!

[LorraineMcfly55 in reply to Matfeb]

What dose do you take?

[Kailua808]

That’s because you don’t have any severe as other people. As for me I was so severe I was on the medication so long that I became Augmentin so that’s why they had to give me 10 gabapentin a day which you Pramipexole Today I’m down to 6Gabapentin to do with the two Pramipexole that Works for me now and I’m feeling pretty good. I also take two clonazepam to sleep at night

[Jade1998 in reply to Kailua808]

I have been diagnosed with severe RLS I have had it since the age of 15 (now 22) I have suffered for the last 6 years because no Dr would take me seriously because I was young and secondly I live on a small island and we literally have about 20 doctors and my surgery I can only register with 5 and all 5 had no clue or knowledge on rls. I have tried other medicines only last year when I was 21. Never taken pramipexole. I was on 2mg ropinorole from a small dose and gradually build up. Gabapentin in Guernsey Channel Islands (were I live) is classed as a controlled drug. So it is very rarely prescribed. I only manged to get it through a neurologist very recently.

So it's not that I hadn't tried medicines and that my case isn't 'severe' it's just they wouldn't prescribe me anything until I was 21 seeing as the only medicines they could prescribe legally through the BNF was parkisons medication.

I've suffered endless nights even days on a bad day. Its early days but so far it's going fantastic that the Gabapentin Is helping we spoke about going to max dose of 1200mg daily but I hope I don't have to do that.

I'm glad your feeling good & yours is working for you- I wish you the best ! 😌

[WideBody]

Thanks Manerva. I did finally got in to your second link. I had to create an account. I did find the conclusion interesting. "In order to provide the same total amount of iron with alternate day dosing, twice the daily target dose should be given on alternate days as total iron absorption from a single dose of 200 mg given on alternate days was approximately twice that from 100 mg given on consecutive days (p<0.001)."

Either way, I find it best to test every 3-4 months to see if it is working. If it's not working then it's best to try something else.