Restless Legs Syndrome (RLS) Discussion Board

Now that I know what to ask for, I can get the blood work done first. I didn't bother this time, although I had a standing order for a ferritin test to be repeated whenever I decided, because my ferritin was rising even though I wasn't taking iron. I figured the value would be kind of meaningless.

I can certainly send the results to the hematologist ahead of time. Depending on the clinic and their policies, or perhaps on the doctor him/herself, I might not be able to ask the hematologist if the results make him balk. But if I could, it would be a small step to also ask him to pre-order the iron preparation. Thanks for these ideas.

Update:
A month has gone by and although I have felt better this last week, with less symptoms and somewhat better sleep, I can't say it's anything different than has happened before. I can't attribute it to the infusion.

To make matters more confusing, I'm having a minor knee surgery next week. If I do have a benefit, it might be masked by the probable negative effects of the surgery.

I don't know why Dr B only recommended one 500 mg dose, instead of two a week apart. I also don't know why I didn't think it was important enough to bother asking him about while I was down there!

I'm sure Dr B would respond to an email regarding why he recommended this dosage. I think we all feel more satisfied when we understand the whys and wherefores. I'm sure you didn't ask at the time simply because you had so much on your mind.

The infusion is having a positive effect. At about 3 weeks my symptoms calmed down but stayed within the parameters of previous experience so I couldn't tell if the infusion caused the improvement. Then at about 4 weeks I was able to use 6 mg instead of 9 mg hydromorph contin for 6 nights one week. The final night (two nights ago) was dreadful but that could have been for other reasons, so last night I went for 9 again, but tonight I'll try 6. In all the time I've been taking 9 mg of this med (about 3 years) I have only been able to get away with 6 mg about 3 times, and never in a row, so that's a fairly objective indication that I am experiencing improvement.

I also have a bit more energy during the day (and/or I'm not as depressed??). I don't actually notice having more energy but I am working longer hours and getting more done.

Dr Buchfuhrer says I should get my iron stats again at the 2-month mark, then get back to him to decide what to do next.
Oh - I was wrong about 500, I got 750 mg Injectafer. He was trying to get me 500 of InFED, but I had to use the infusion pharmacy, and they only use Injectafer.

That is great new, Beth!

I have been better during the day for awhile but think it started earlier than the infusion. I have no idea why. I am also less... something. I am going to bed earlier and getting up earlier. When I went to a workshop a few weeks ago, I was up and at the workshop by 8:15 two days in a row; I got up to get to the plane the day before at 7 AM, and was up on day 4 by 9 AM to meet some others and go sightseeing - that is UNHEARD of for me.

How strange...OH! Duh! I know why for me. I am taking an AD for the fibro. I am at half a therapeutic dose, but because I am often sensitive to these compounds, I started at a quarter dose and then went to a half. The pain is greatly diminished. I still wake up with pain sometimes, but nothing like before. That alone would make anyone feel better. And, if the DA is also helping my mood, then all is good!

Ann - that is such good news, your day starting so much earlier. A whole day stretching in front of you.
And Beth - something good is happening, you deserve it.

badnights wrote:The infusion is having a positive effect. At about 3 weeks my symptoms calmed down but stayed within the parameters of previous experience so I couldn't tell if the infusion caused the improvement. Then at about 4 weeks I was able to use 6 mg instead of 9 mg hydromorph contin for 6 nights one week. The final night (two nights ago) was dreadful but that could have been for other reasons, so last night I went for 9 again, but tonight I'll try 6. In all the time I've been taking 9 mg of this med (about 3 years) I have only been able to get away with 6 mg about 3 times, and never in a row, so that's a fairly objective indication that I am experiencing improvement.

I also have a bit more energy during the day (and/or I'm not as depressed??). I don't actually notice having more energy but I am working longer hours and getting more done.

Dr Buchfuhrer says I should get my iron stats again at the 2-month mark, then get back to him to decide what to do next.
Oh - I was wrong about 500, I got 750 mg Injectafer. He was trying to get me 500 of InFED, but I had to use the infusion pharmacy, and they only use Injectafer.

awesome!!! the iv iron does work doesn't it? it's amazing what it does to the sleep.

I'm about 6 weeks post-infusion.
I am maintaining at 6mg hydromorph contin instead of 9 mg.

I have energy during the day, and find I can work normal amount of hours again. I've gone from working 5 or 6 hours (some days, less), some of those spent drooling in hiatus or lying under my desk, to working up to 10 hours in a day without wanting to sleep at all.

The quality of my sleep has improved. I tend to get up only 3 times a night instead of 5 at the best of times before, and each sleep feels refreshing.

I have a very positive outlook, but I don't know if that's directly due to the iron or indirectly from the improved sleep.

I pushed myself too hard and am kind of crashing now. I was invited to submit a paper to a volume that I'd love to get published in, but the invitation came late and it has to be written by the end of November. Coinciding nicely with the iron infusion kicking in, I've worked 6 days/wk the last two weeks, and 9 or 10 hours some days - - I knew I shouldn't, but I couldn't find the balance! Today was not a total bust but back to 5 hours at work. I hope I can keep this all in balance and do well.

My GP here has requested all the records of my visit with Dr B and the iron infusion, and is definitely intrigued by my results. She has ordered a whack of blood work to be sure the iron isn't affecting any organs negatively. I think I have a good chance of getting her to eventually order the infusions for me, but probably not the next one.

Beth, this is such a positive outcome.
Wouldn't it be wonderful if your GP was to order your infusions.
Please do take care of yourself, pace yourself.

Overall, very good!

I know my primary care doctor was very concerned when my ferratin was at a whopping 670 not too long after my transfusion. I cut out the iron tablets right away and now just do the desiccated liver tabs which are like food. I called my neurologist (Ondo) who told me to get off the iron, but also stated I was not in danger. Likewise, my ferratin was at 325 BEFORE I had the iron transfusion and the neurologist didn't seem that concerned. Now I just trust my body with what I need.

badnights wrote:I'm about 6 weeks post-infusion.
I am maintaining at 6mg hydromorph contin instead of 9 mg.

I have energy during the day, and find I can work normal amount of hours again. I've gone from working 5 or 6 hours (some days, less), some of those spent drooling in hiatus or lying under my desk, to working up to 10 hours in a day without wanting to sleep at all.

The quality of my sleep has improved. I tend to get up only 3 times a night instead of 5 at the best of times before, and each sleep feels refreshing.

I have a very positive outlook, but I don't know if that's directly due to the iron or indirectly from the improved sleep.

I pushed myself too hard and am kind of crashing now. I was invited to submit a paper to a volume that I'd love to get published in, but the invitation came late and it has to be written by the end of November. Coinciding nicely with the iron infusion kicking in, I've worked 6 days/wk the last two weeks, and 9 or 10 hours some days - - I knew I shouldn't, but I couldn't find the balance! Today was not a total bust but back to 5 hours at work. I hope I can keep this all in balance and do well.

My GP here has requested all the records of my visit with Dr B and the iron infusion, and is definitely intrigued by my results. She has ordered a whack of blood work to be sure the iron isn't affecting any organs negatively. I think I have a good chance of getting her to eventually order the infusions for me, but probably not the next one.

Do you have early onset (<36 years) or late onset RLS?

Do you have early onset (<36 years) or late onset RLS?

Early. I don't know exactly when because it was sort of always there, nothing I ever talked about. Except my husband had it too, and that was interesting at the time, but not a big deal. It only got horrible after an infection and a knee operation when I was in my 40s, but I think it was probably slowly getting worse anyway. Either the antibiotics or the operation (blood loss? something else?) triggered the worsening. Augmentation on ropinirole gave the coup de grace.

As my infusion from last Sept. wore off and symptoms started to become worse, I started taking iron tablets again. In March, I think. First 1, then 2 tablets, and for the last 2-3 weeks, 3 tablets nightly of 325 mg ferrous sulfate. I didn't do it soon enough, I was crawling up the walls for a couple of weeks there, but the symptoms have calmed down now. They still seem bad, but I think this is pretty much what they were like before the infusion.

Oh Lord, how I want to feel again like I did after the infusion took effect!

Every time I get a little better, it makes me see more clearly how far away from true health I am. Last winter - after the infusion - was sooo much better than now, and yet it was still ranked as severe WED/RLS. This is something many (most?) of us are familiar with, gradually getting used to a bad situation, til we can't even remember what normal is supposed to be anymore. We tell people we're doing well, when we're doing less badly. We have to do that, to survive. But I don't want to forget what normal is, because I want to keep fighting to get it back.

Beth. Such heartfelt post.