Restless Legs Syndrome (RLS) Discussion Board

I am so happy to announce that--on RLS Awareness Day, no less--I have finally succeeded in getting a doctor to order iron infusions for me!

I have to thank the people here on this site who helped me get this done. From a suggestion by ViewsAskew, I wrote an email to Dr. Buchfuhrer and was astounded to actually get a reply from him last night. I had attached my latest iron levels and a brief history of my experience with RLS. Here is what he replied:

First, let me say that your RLS treatment has not been optimal. It is a good thing that you had side effects from the Requip or otherwise you would very likely have developed augmentation (a worsening of RLS from taking a dopamine drug) which occurs at a rate of 7-8%/year of people who take a dopamine drug (see attached augmentation article). With proper treatment, almost all RLS patients should get excellent relief from their very disruptive RLS symptoms.

The issue with iron and ferritin levels is that the normal lower limits (below which is considered iron deficiency) varies considerably from lab to lab. Your lab chooses 15 as the lower limit for iron saturation (this is more accurate than total iron as your body has produced more iron binding protein to carry the decreased iron stores). Many other labs use lower limits for the iron saturation as high as 20% or more. Your value at 18% is considered low (see attached Iron for RLS consensus article which recommends iron infusions for patients under 20%).

In addition, the consensus paper also recommends iron infusions for RLS patients with serum ferritin levels under 100 (your was 30).

Oral iron rarely helps as absorption decreases as ferritin levels approach 50 and we only recommend oral iron once a day due to decreased absorption due to negative feedback from hepcidin (a hormone that goes up when increased oral iron is taken).

You might be able to convince your doctors that iron deficiency is the correct diagnosis based on the consensus paper attached but it is a lot to read and most doctors are not that interested in learning more about RLS (unfortunately).

So I printed out both of the articles he sent and added a copy of this letter and my labs and presented the pile to my rheumatologist this morning. Unlike my PCP and the neurologist I saw last week, he didn't show any attitude about being given advice from another doctor via a lowly patient. He immediately read Dr. B's letter and then started right off arranging iron infusions for me. He took the suggestions from Dr. Mark Benkowski I had on me for what kind of iron to order (Injectafer) and then went through one of the papers to find out the amount usually ordered. It was astounding.

When he finished, he turned to me and said he hoped they would help. I told him, yes, there is a chance they might not but I had to start with them to see if they would. I told him that I didn't know why it was so hard to get my other doctors to try something so simple. Why did it have to be such a fight with them?

I'm not positive that insurance will pay for them, but while I cared a lot about that 2 weeks ago, right now I'm willing to pay anything just to sleep better. I did suggest that they try ordering it for "iron deficiency" rather than restless legs, and they were okay with that. The doctor is going through an infusion center so we don't have to get a hematologist involved.

So hip hip hooray and thank you to all who helped. I will let you know how it goes.

Wonderful news!!!

My experiences are very similar - most doctors like to proclaim. Few listen. Those who listen and gems when you find them.

That is truly wonderful news. It is so refreshing to hear about doctors who still care enough to listen to their patients and read what is provided.

What a wonderful outcome. Can't wait to hear how you get on with them.

I was getting a little worried when I hadn't heard from my doctor's office; thought I would have to start calling places myself. But a mysterious Russian-accented lady called this afternoon to set up the appointment for next week and assured me that Injectafer was a very very good solution. Apparently they have to order it which is why I couldn't have one immediately.

Insurance is covering 85% but I still had a deductible so $260 for the first one and $150 for the second. She said she would let me discuss with my husband and call back but I said, "I'll take them! Sign me up!!!" which made her laugh.

I'm actually a huge baby when it comes to needles. I HATE needles and IVs most especially. I have hard to find veins and they usually have to do my hand or wrist. Ick ick ick. But when you get desperate enough....

Double YAY!! Getting an order is hard enough, getting insurance to pay is even harder. Way to go!!!

Be glad you are getting it through an infusion center. They have the best trained nurses with the most experience starting IVs. Likely they will get yours started fairly easily with very little pain.

Aww, thanks for that, Holland. That's comforting to know.

Celine

Well done. I wish you well.

Excellent result. I too have had success getting iron infusions, due to the help and specific advice I have received here, esp from Holland. The iron infusions were immediately beneficial in reducing my symptoms. Good luck!

Unlike my PCP and the neurologist I saw last week, he didn't show any attitude about being given advice from another doctor via a lowly patient. He immediately read Dr. B's letter and then started right off arranging iron infusions for me.

Wow, what an absolute gem of a man. And Dr B! The ultimate gem. I loved reading your story; remember everyone, there ARE doctors out there who will listen, care, and help.

Thanks all!

Holland, you were so right about the infusion nurse: she had to go to the top and side of my hand near the wrist and I was ready to faint at the thought of how painful it would be. But I barely felt the stick and amazingly there is NO bruising--you would never believe that I had received an IV there at all.

I sent fruit platters to both Dr. Buchfuhrer's office and to my rheumatologist's office to thank them for making this happen.

Celine

stjohnh wrote: ↑

Fri Sep 25, 2020 2:52 pm

Double YAY!! Getting an order is hard enough, getting insurance to pay is even harder. Way to go!!!

Be glad you are getting it through an infusion center. They have the best trained nurses with the most experience starting IVs. Likely they will get yours started fairly easily with very little pain.

You are SO right about this! I did have one nurse who was new (I had to go multiple times) and it was a bit painful. The other three? I honestly am not sure I felt it!

I've got even better news now: received a phone call this morning from Emory University in Atlanta, Georgia: Dr. Rye had a cancellation and could see me next week! I had thought it would take until well into next year to get to see him. I was about to take the appointment, even though it meant my husband having to get a day off work to do it, but I took a chance and asked if there were any chance he had an opening during my husband's vacation time 2 weeks later. Another miracle: they had a cancellation there as well!

I don't know how many of you believe in the power of prayer, but my husband and I have been praying a special 54-day novena (Catholic-speak for what is usually 9 days of prayer, but this was a super duper novena). Things were looking very very bleak during most of it, but here I am with 7 days to go and I've not only got iron infusions but I've got an appointment with an RLS rock star! Was it ViewsAskew who told me about Dr. Rye actually having RLS himself? And when I received the above email from Dr. Buchfuhrer, he told me that Dr. Rye would be a very good doctor for me to see.

It takes about 2.5 hours to get there, but I'm sure we can make it work somehow. If my RLS improves, I'll be able to drive myself.

So happy today!