A few questions about iron tablets

[SleepyBhamster]

I'm relatively new to RLS. In March, my rheumatologist prescribed Requip for me, but while it worked great at first, I just couldn't find a dosage that didn't leave me completely groggy the next day. It was either sleep at night and be groggy all the next day, or don't take it and have restless legs--and be groggy all the next day. Then my ENT prescribed an antihistamine for my nighttime stuffiness--but I didn't know it was an antihistamine since we had discussed already that I couldn't take them without having restless legs at night. Took them 4xday for 10 days getting worse and worse before I looked up the med and found out. ARGH!

That's when I joined RLS.org. I decided to do the 10-day drug holiday, going off Requip--it was awful. To speed things up, this past Friday I got in to see a neurologist at our local university hospital and she was great. BUT I had hoped for iron infusions; instead she has started me on ferrous gluconate 1/day, wanting me to get up 3/day. These are to be taken with meals and with a Vitamin C tablet.

As I posted elsewhere (newbie thread), my husband and I were planning on a road trip in less than a month for his 60th birthday. As I have had no sleep for the past 2 nights, I can't see how these iron tablets are going to have me better in time for the trip. (BTW, my ferritin is at 30.)

So with that preamble, here are my questions:

1. I was surprised she wanted me to take ferrous gluconate. I showed her my notes from Dr. Andrew Berkowski's February 2020 webinar where he said to avoid ferrous gluconate. She seemed to be surprised that he would say that. She told me several times why she wanted me to take it rather than ferrous sulfate, but frankly, I couldn't understand it at all. I took Feosol Bifera several years ago when I had some unexplained anemia (I also got an iron infusion then which helped me a lot), so I showed it to her on my phone but she was leary about the added ingredients. It's rather expensive, so pricewise the gluconate is great, but how long will it take to help? WILL it help?

Johns Hopkins (Dr. Earley) puts their patients on ferrous sulfate, so I don't see why she's choosing ferrous gluconate. But does anyone here have personal experience with it? IS ferrous gluconate less effective than ferrous sulfate?

2. I AM very sensitive to medications and usually have to split or even quarter tablets to take a very very low dose. But surprisingly, the two doses I have taken of the ferrous gluconate (1 tablet with dinner) have been fine. SO, how quickly do you think I could move on to the 3/day? I can't remember how long the doctor said I might want to wait, but after 2 doses with no stomach upset and 2 nights of zero sleep, I'm ready to down an entire bottle.

3. Do you think there's any chance I could convince her to send me for an infusion if I already asked and she felt it was best to try tablets first? Wouldn't an infusion help jumpstart the process?

I appreciate ANY advice you can offer. Really feeling at the end of my rope.

Thanks!

[Rustsmith]

So long as you are taking a dose of ferrous gluconate that provides the same amount of iron as what Dr. Earley recommends for ferrous sulfate (65mg iron equivalent), then the two are comparable. Ferrous sulfate is less expensive than ferrous gluconate and it requires that you also take a vitamin C tablet at the same time. The ferrous sulfate/vitamin C produces a chemical combination that is similar to that of ferrous gluconate. So the only real differences are that ferrous sulfate is cheaper, but can be harder on the stomach.

I do not have experience with ferrous gluconate, so I am not familiar with the specifics of its recommended use. With ferrous sulfate, the recommendation is that it should be taken on an empty stomach. This is important because it is difficult for the gut to adsorb iron, especially if it is also digesting food. There are only a few cells in the intestines that adsorb metal irons like iron, calcium and zinc and it seems that everything else gets priority over iron. So to get the most benefit from the tablets you take, it is best if they aren't having to compete with food or anything else.

[stjohnh]

Steve is correct, the main advantage of ferrous gluconate is fewer stomach problems. Ferrous sulfate is fine if you don't have indigestion with it, and it is much cheaper.

You might print the IRLSSG group guidelines on Iron in RLS. IV iron is what you want, the chance that oral iron will help is low. Here is the URL for the guidelines paper.

https://www.sciencedirect.com/science/a ... via%3Dihub

[SleepyBhamster]

Thanks, Steve and Holland,

While saving and printing out the article you linked above, Holland, I realized that this is the very article that got me banned and blocked from a Facebook RLS group. It's a long story and had me quite quite upset yesterday, but I had had no sleep for 2 days in a row and so I let it get to me too much--but the woman who runs that group is a nutcase: she sent me several PMs calling me all kinds of names. It was quite unexpected and shocking. Still seems surreal that trying to recommend a scholarly paper would have that kind of response. Done with FB groups and will stick with this one.

At any rate, I will try my best to get my doctor to read and reconsider her decision. I so want to go on this trip. Have not had RLS this severe before where I can go days with no sleep. Fortunately, I am a housewife with no pressing responsibilities and my husband is very understanding, so it's not like it's keeping me from functioning at a job. But still, no one wants to go through this.

I don't know if I should make a new post to ask this question, but I woke up this morning wondering why I was able to sleep all the way through last night. Do you just get to a point where your body HAS to sleep? Or is there something I did yesterday that allowed me to sleep last night? I have been trying to notice and I do log food and activity on SparkPeople but don't see any glaring differences.

Thanks again!

Celine

[ViewsAskew]

Thanks, Steve and Holland,

While saving and printing out the article you linked above, Holland, I realized that this is the very article that got me banned and blocked from a Facebook RLS group. It's a long story and had me quite quite upset yesterday, but I had had no sleep for 2 days in a row and so I let it get to me too much--but the woman who runs that group is a nutcase: she sent me several PMs calling me all kinds of names. It was quite unexpected and shocking. Still seems surreal that trying to recommend a scholarly paper would have that kind of response. Done with FB groups and will stick with this one.

At any rate, I will try my best to get my doctor to read and reconsider her decision. I so want to go on this trip. Have not had RLS this severe before where I can go days with no sleep. Fortunately, I am a housewife with no pressing responsibilities and my husband is very understanding, so it's not like it's keeping me from functioning at a job. But still, no one wants to go through this.

I don't know if I should make a new post to ask this question, but I woke up this morning wondering why I was able to sleep all the way through last night. Do you just get to a point where your body HAS to sleep? Or is there something I did yesterday that allowed me to sleep last night? I have been trying to notice and I do log food and activity on SparkPeople but don't see any glaring differences.

Thanks again!

Celine

Sadly, we are aware of that group. So many people getting incorrect information - makes me furious. Nothing we can do - I wish there were.

We all tend to take one data point (one night of good sleep, one night with no movements, etc.) and try to figure it out. That can take hours of my brain's time, lol. Except rarely does it tell us anything. Who knows. When you have ten or fifteen, then there is likely a pattern we can start to figure it out. Everything from caffeine to alcohol to what we eat to stress can contribute.

You've stopping the ropinerole at least 3to 4 weeks by now? Could simply be that. Just watch it and see. And, keep a sleep diary - include medications taken, food eaten (general), etc.

[SleepyBhamster]

Yes, I found it quite perplexing: the evening of the day I was SO happy to meet the new doctor, I didn't sleep at all. And the night after being completely traumatized by that crazy woman from the RLS group, I slept 11+ hours. But I DO know that to celebrate meeting that doctor, I had quite a few cookies in around 8-9pm--and some have mentioned sugar being a trigger, so I'm trying to pay attention. (I have joined SparkPeople to lose weight, hoping that better health will improve everything, including my sleep. I'm not losing any weight, but I'm definitely more active and making better food choices.)

[Rustsmith]

Thanks, Steve and Holland, While savin ... n! Celine

Celine, I also help with the FB group that you had your run-in with. The woman that you dealt with is the owner of that private group and has a tendency to do some things at times that seem totally irrational to me, but it is her group so she can do whatever she wants. At times I feel that I have to tiptoe around to keep from getting banned like one of my friends (another Foundation volunteer) was. As strange as she can seem at times, that group is far, far better than some of the other private RLS FB groups that can get downright vicious if you don't totally agree with their opinions. At least that group tries to stick to things based upon science and debunk a lot of the recommendations from some of their members that suggest things like ivory soap under the sheets and Hylands Restless Legs tablets or that anyone who takes an opioid is immediately going to become a drug addict. But that said, you are definitely better off here than over there.

[SleepyBhamster]

Steve, I actually liked that group very much and was getting good help from two of the admins. That's why I was surprised that I got banned. I had to join under my husband's FB account just so I could find the names of the two admins (I had forgotten) so I could ask them if they knew why I was banned because I had no idea. That's when I got this series of PMs calling me a liar, a baby, and other ridiculous names (I had to look up some of the British terms). I thought the woman was suffering from some kind of mental breakdown, honestly. It just wasn't rational. If I had had some sleep I wouldn't have let it rattle me so much, but it really did.

Changing the subject: I was able to take a cancelled appt at my rheumatologist's tomorrow morning. Even though he is the one who put me on Requip, I do think I may have the best chance of talking him into ordering infusions for me since he is always studying and keeping up with new treatments. Other than that "Evidence based and consensus..." article, is there anything else you would recommend I bring him? Oh, and the RLS and Iron paper from RLS.og.

Celine

[SleepyBhamster]

Would anyone advise that I keep taking these iron pills when I've got infusions coming up? Dr. Buchfuhrer wrote that they don't help, so should I just toss them? My husband has some unexplained anemia that they haven't been able to figure out a source for, but our PCP just told him to take a multivitamin. (The only way he found out is that he gives platelets regularly and a few times has not been able to. He had an endoscopy to check but they came up with nothing.)

[Rustsmith]

Oral iron takes a long time to have any impact, so with your infusions happening soon, it doesn't make a lot of sense to continue with them.

As for your husband, the multivitamins are probably not providing him with much iron, especially if he is taking them near mealtime like most people do. So, he might benefit from your remaining supply. Just make sure that he takes them the same way that you were, namely with a vitamin C (if they are iron sulfate) and on an empty stomach.

[Polar Bear]

If you defiinitely have IV iron infusions coming up then I don't reckon there's much point in continuing taking oral iron. Especially considering how long it takes to have an effect.

[SleepyBhamster]

As for your husband, the multivitamins are probably not providing him with much iron, especially if he is taking them near mealtime like most people do. So, he might benefit from your remaining supply. Just make sure that he takes them the same way that you were, namely with a vitamin C (if they are iron sulfate) and on an empty stomach.

Steve, they are actually ferrous gluconate, and the doc wanted me to take 3xday with food. Dr. Buchfuhrer said 3sday is too many, so I'll just tell my hubby to take one when he gets home from work and has an empty stomach. With the Vit C.

Thanks!

Celine

[Rustsmith]

they are actually ferrous gluconate

Celine, Vitamin C isn't needed if they are ferrous gluconate. With ferrous sulfate, you need the vitamin C to turn it into ferrous citrate, which is similar to ferrous gluconate. But the empty stomach is important since you don't want food to compete for the limited number of intestinal cells that absorb iron.

[SleepyBhamster]

Makes me wonder how much the neurologist really knows about iron. She's the one who said to take them with vit c and with a full meal 3xday.

[stjohnh]

My experience is that few doctors know much about iron except that if you don't have enough, you get iron deficiency anemia. That's about it