Hello from Newbie in Birmingham, AL

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SleepyBhamster
Posts: 10
Joined: Tue Aug 25, 2020 4:04 pm

Hello from Newbie in Birmingham, AL

Post by SleepyBhamster »

I joined the RLS Foundation several weeks ago but forgot all about the Discussion Board, so this is my first time on it. I have my first appt. with a neurologist this Friday so have my fingers crossed I can quickly be set up for some iron infusions. Last week I got my PCP to take my iron levels but while he acknowledges that I could use iron infusions for RLS (Ferritin was 30), it seems his nurse is not going to help me get insurance to pay for it. It's unclear to me whether she is speaking for herself or speaking for the doctor when she replies to my patient portal emails, so I'm giving up and waiting till I get to see the neurologist at the local university hospital. (She is acting like I'm asking the doc to do something unethical to say I'm iron deficient when she sees them as normal levels.)

I have had restless legs whenever I took an antihistamine, but didn't really think I had RLS until this year. Always thought it was just some problem with medication. But I did a withdrawal from Klonopin a few years ago and while restless legs appeared to me to be part of the withdrawal process, it didn't stop after I was finally done with it. (DON'T take Klonopin if you can at all help it!) After complaining about my restless legs in a telehealth visit with my rheumatologist's nurse, they put me on Requp .25mg--this would have been in March of this year. Seemed like a miracle at first. But by mid-August I was struggling: either it didn't help and I couldn't sleep or if I increased the dose I was useless the next day with grogginess.

THEN I went to my ENT about nighttime congestion. WE SPOKE ABOUT ANTIHISTAMINES BEING BAD FOR ME, but guess what? He put me on an antihistamine 4 x day!!! I took it for a week, trusting that it was NOT an antihistamine, but as I was having worse and worse nights, I finally looked it up and yup, antihistamine. He never even apologized. Just had one of his nurses tell me I could try Flonase. I'm pretty sick of doctors and their nurses right now. ;-P

I think that's when I joined RLS.org and read all the literature. I decided to do the 10 day "drug holiday" going off Requip. Took more than 10 days for me--more like 14. Pretty darn awful. But I've had to wait to see a neurologist and didn't want to wait to have them take me off it. I've also been tapering down Lexapro from 20mg to 10mg. I was going to start 5mg today but didn't have time to split the pill. Will do it tomorrow.

So that's where I am. I'm 58, have lupus and Sjogren's and am desperately trying to lose weight for my health. Hoping that getting off Lexapro, getting better sleep and possibly more energy with iron infusions might be what I need to boost the weight-loss process.

Yankiwi
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Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Hello from Newbie in Birmingham, AL

Post by Yankiwi »

Hi Sleepy, for nasal congestion Claritin is okay, Flonase works for me unless allergies are really bad then I also take Claritin. For a cold I use nose drops. Day/Night cold medicine is usually a trigger for RLS.

Good luck, you're in the right place for advice and empathy.

Polar Bear
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Re: Hello from Newbie in Birmingham, AL

Post by Polar Bear »

Have you tried a netti pot. I haven't myself but have several friends who swear by them. They cost very little and are available from Amazon.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Location: Los Angeles

Re: Hello from Newbie in Birmingham, AL

Post by ViewsAskew »

I use a netti pot, but also use Flonase and when really bad, add one of the newer antihistamines.

Most of the newer ones (since maybe the 80s or 90s?) do not cross the blood brain barrier in the same way and many of us can take them. What you never want to take is dipenhydramine - in the US, that is name-brand Benadryl.

Glad you figured out how to stop the ropinerole - it definitely is not fun!

I have not figured out the weight loss thing. I have some non-defined auto-immune thing, tend toward depression in the last 15 years, and am hypothyroid. Along with a bunch of other really random things, like snapping hip syndrome, lol. At any rate, the best I've been able to ascertain for my body is that the weight issue is gut/microbiome related - in my many experiments with cutting out foods, there are times I feel "normal" again in relation to food, but it always ends, as if my body adjusts to the changes. I never "lose" the RLS during those times, but I do feel better emotionally and physically as well as stop craving food.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 1108
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hello from Newbie in Birmingham, AL

Post by stjohnh »

SleepyBhamster wrote:
"...I could use iron infusions for RLS (Ferritin was 30), it seems his nurse is not going to help me get insurance to pay for it. It's unclear to me whether she is speaking for herself or speaking for the doctor when she replies to my patient portal emails, so I'm giving up and waiting till I get to see the neurologist at the local university hospital. (She is acting like I'm asking the doc to do something unethical to say I'm iron deficient when she sees them as normal levels.)
..."

Usually it is the staff of the doc that orders the med that deals with the insurance aspects, so assuming the neurologist actually orders the med, the staff of the neurologist would deal with the insurance. This is unfortunately part of the IV Iron problem. The less expensive preparations have much less evidence for their support. The recommended IV Iron is Injectafer, an expensive med in the U.S. ($1000-2000 per dose, 2 doses needed). The insurance situation is complicated because the FDA has not approved any IV Iron preparation for RLS. AFAIK, the only FDA approved indication for any form of IV Iron is "iron deficiency anemia." That means that BRAIN iron deficiency (I.E. RLS) is NOT approved and insurance companies try to pay as little as possible. Meaning getting the insurance company to pay for it may be difficult.
Blessings,
Holland

SleepyBhamster
Posts: 10
Joined: Tue Aug 25, 2020 4:04 pm

Re: Hello from Newbie in Birmingham, AL

Post by SleepyBhamster »

Saw the neurologist on Friday and was quite delighted with her. She's a young woman, really interested in RLS and has taken part in research about it. I didn't understand much of what she was trying to show me, but she has been studying some kind of RLS connection to the spinal cord. Also "Restless Gut"--guess there may be a connection with IBS.

HOWEVER, she didn't want to start me with IV infusions but start taking ferrous gluconate tablets, starting at 1/day with a meal and working my way up to 3/day. I don't really understand why she didn't want me to go with ferrous sulfate which is what most tablets are (and what Johns Hopkins prescribes for their patients). She said if the pills don't help, then she will consider an infusion.

The thing that makes me sad about this is that I had SO hoped to get a jumpstart on feeling better, esp. since my husband and I are to go on a road trip in mid-October for his 60th birthday. We've been looking forward to this for months, but now that I'm awake for the 2nd night in a row after seeing the doctor, I wish I had explained about the trip or tried to be more insistent. She thought the infusion could cause me problems, but I told her that several years ago I had an iron infusion after some unexplained anemia. I didn't have any problem with it and it helped get me back to normal (I didn't have RLS then).

Haven't had a wink of sleep all night and feeling depressed. I haven't let it get to me so much because I thought I'd be better in time for our trip, but now it's looking unlikely. :cry:

Rustsmith
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Re: Hello from Newbie in Birmingham, AL

Post by Rustsmith »

Congratulations on finding a knowledgeable young doctor. You are very lucky to have found one outside of a Quality Care Clinic. Doctors like that exist, but they can be the needle in a haystack.

The recommendations on iron therapy recommend starting out with oral iron supplements before trying infusions. I suspect that they say this because it is so difficult to convince the hematologists who actually do the infusions to perform one without first "failing" with oral supplements. The hematologists are still learning about RLS, so it is unfortunate that we have to continue to suffer for now.

As for ferrous sulfate, it works but can be hard on the stomach for some people. Your doctor probably wanted to avoid the possibility that you would have problems and simply jumped to an iron compound that causes less stomach distress.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 16173
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Hello from Newbie in Birmingham, AL

Post by ViewsAskew »

SleepyBhamster wrote:
Sun Sep 20, 2020 10:29 am
Saw the neurologist on Friday and was quite delighted with her. She's a young woman, really interested in RLS and has taken part in research about it. I didn't understand much of what she was trying to show me, but she has been studying some kind of RLS connection to the spinal cord. Also "Restless Gut"--guess there may be a connection with IBS.

HOWEVER, she didn't want to start me with IV infusions but start taking ferrous gluconate tablets, starting at 1/day with a meal and working my way up to 3/day. I don't really understand why she didn't want me to go with ferrous sulfate which is what most tablets are (and what Johns Hopkins prescribes for their patients). She said if the pills don't help, then she will consider an infusion.

The thing that makes me sad about this is that I had SO hoped to get a jumpstart on feeling better, esp. since my husband and I are to go on a road trip in mid-October for his 60th birthday. We've been looking forward to this for months, but now that I'm awake for the 2nd night in a row after seeing the doctor, I wish I had explained about the trip or tried to be more insistent. She thought the infusion could cause me problems, but I told her that several years ago I had an iron infusion after some unexplained anemia. I didn't have any problem with it and it helped get me back to normal (I didn't have RLS then).

Haven't had a wink of sleep all night and feeling depressed. I haven't let it get to me so much because I thought I'd be better in time for our trip, but now it's looking unlikely. :cry:
So sorry to hear that. I often leave an office visit and wish I'd explained things better or been more insistent.

How long before you are off the Lexapro? It may be better when you are done with it. Also, you're newly off the ropinerole - it can take quite awhile for that to abate, but it DOES get better.

There are some things you could try - if legal - such as cannabis and kratom.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SleepyBhamster
Posts: 10
Joined: Tue Aug 25, 2020 4:04 pm

Re: Hello from Newbie in Birmingham, AL

Post by SleepyBhamster »

Thanks for your emails, Steve and Ann! I just sent a rather passionate plea to my doctor to beg her to try me on an iron IV, wondering why I needed to suffer another 1-3 months before trying. Told her I'd pay out of pocket if necessary because I'm that desperate. UAB has a great patient portal and she wanted us to keep in touch through it, but as a new doctor there, she isn't listed. Took some searching but I found her email as an instructor at UAB School of Medicine and sent it through that route. Hope she doesn't get annoyed with me for doing it that way.

As for the Lexapro, I told her how I had tapered down to 5mg at this point--she didn't want me to go any further, feeling that I probably needed it since RLS and depression seem to go together. I didn't push the point since I do know that my mood has tanked whenever I tried going off Lexapro completely.

I don't know anything about Kratom--the name makes me think of the beast in the 20,000 Leagues Under the Sea story. ;-) CBD is legal here in Alabama, but I thought Dr. Benkowski and/or Buchfuhrer said it wasn't effective. (An Australian man who was in the Zoom support group meeting last Thursday said that he makes a tea from marijuana leaves that he grows himself, and that gives him the only relief he has ever gotten. )

So glad to have joined RLS.org and this board: the support and knowledge I have gained here is awesome!

Celine

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