I'm at the end of my rope. Don't know how to go about arranging to get iron infusions since my PCP and now my new neurologist won't order them. I'm feeling beaten whereas before I had felt well-armed with all the knowledge I had gained from joining the RLS Foundation.
I am going to try contacting Injectafer directly to ask for suggestions. Also a nearby oncology office where they give Injectafer injections.
Thanks.
Has anyone arranged iron infusions on your own? How?
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SleepyBhamster
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- Location: Birmingham, Alabama, USA
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ViewsAskew
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Re: Has anyone arranged iron infusions on your own? How?
You might be able to convince someone at the oncology office with the research paper on it. I did. BUT!!! Dr. Buchfuhrer sent me there. Now, I did have to know my stuff, had the right pages bookmarked, etc. I think what I did tipped the scales, but not sure it would have been enough without it.
You can email Dr. B - somno@verizon.net - and explain the issue and ask for his advice. He has been known to be willing to talk to doctors he doesn't even know - for people who aren't even patients. At the least, if he does suggest an infusion, you can take that email to the oncology place and show it to them, also.
One other option. Dr. Rye is in at Emory in Georgia. Not next door, exactly, but could be worth it to drive there to have an appointment with him. Dr. Rye HAS WED/RLS - the first time I met him, I think I felt like he was a demi-god - a doctor and researcher who actually understood what we went through!
You can email Dr. B - somno@verizon.net - and explain the issue and ask for his advice. He has been known to be willing to talk to doctors he doesn't even know - for people who aren't even patients. At the least, if he does suggest an infusion, you can take that email to the oncology place and show it to them, also.
One other option. Dr. Rye is in at Emory in Georgia. Not next door, exactly, but could be worth it to drive there to have an appointment with him. Dr. Rye HAS WED/RLS - the first time I met him, I think I felt like he was a demi-god - a doctor and researcher who actually understood what we went through!
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.
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.
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SleepyBhamster
- Posts: 91
- Joined: Tue Aug 25, 2020 4:04 pm
- Location: Birmingham, Alabama, USA
Re: Has anyone arranged iron infusions on your own? How?
Oh that's a great suggestion! I forget about Emory. My husband and I were planning a road trip from Birmingham to Gettysburg, and I wondered about trying to get into Johns Hopkins--didn't even think about the one closer to home.
Thanks SO SO much for Dr. Buchfuhrer's email address! I actually called and left a message with his billing department to ask what they do to get their patients covered by insurance. At that time, my doctor was going to send me for an infusion but his nurse told me it wouldn't be covered. I should have just done it then but was caught by surprise that it wouldn't be covered and was $900. She's a very difficult person and I"m not sure the offer is still open. But I tried this morning, asking if she could send the order to an oncologist's office near my home. Fingers and toes are crossed.
Just got a message that my doctor will see me Friday morning, so it looks like I'm going to have to try to convince him all over again. I gave him a pile of papers from Johns Hopkins and RLS.org, but he seemed offended that I thought he might need some education about RLS.
Why is it so hard to get help for what ought to be a rather easy remedy? That is, I'm assuming that getting my ferritin level up with infusions will be a quick remedy for me. I want to be one of the 60% who are helped--per Dr. Buchfuhrer.
Thanks SO SO much for Dr. Buchfuhrer's email address! I actually called and left a message with his billing department to ask what they do to get their patients covered by insurance. At that time, my doctor was going to send me for an infusion but his nurse told me it wouldn't be covered. I should have just done it then but was caught by surprise that it wouldn't be covered and was $900. She's a very difficult person and I"m not sure the offer is still open. But I tried this morning, asking if she could send the order to an oncologist's office near my home. Fingers and toes are crossed.
Just got a message that my doctor will see me Friday morning, so it looks like I'm going to have to try to convince him all over again. I gave him a pile of papers from Johns Hopkins and RLS.org, but he seemed offended that I thought he might need some education about RLS.
Why is it so hard to get help for what ought to be a rather easy remedy? That is, I'm assuming that getting my ferritin level up with infusions will be a quick remedy for me. I want to be one of the 60% who are helped--per Dr. Buchfuhrer.
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SleepyBhamster
- Posts: 91
- Joined: Tue Aug 25, 2020 4:04 pm
- Location: Birmingham, Alabama, USA
Re: Has anyone arranged iron infusions on your own? How?
Oh my gosh, my rheumatologist got a cancellation so I get to see him first thing tomorrow morning! He is the one who prescribed me Requip in March*, so he obviously doesn't know about iron being the first line of treatment, but he's also a good guy who should be open to learning more. I'm sure if I make a good case he will order infusions, but please help me make a good case.
My brain is fried right now and I need to try a nap, but if you would tell me what you would give a doctor to try to convince him you need IV iron, I would appreciate it. I did print out yesterday the 18 page "Evidence-based and consensus clinical practice guidelines for the treatment of RLS..."
*I went off it last month. Or was earlier this month? The days are so long and blurred together.
P.S. I just brought up Dr. Rye's page on the Emory website: I want to see him! Esp since he's a Chicagoan and so am I! It was meant to be. I am defnitely going to try to see him even if my rheumatologist gets me an infusion.
My brain is fried right now and I need to try a nap, but if you would tell me what you would give a doctor to try to convince him you need IV iron, I would appreciate it. I did print out yesterday the 18 page "Evidence-based and consensus clinical practice guidelines for the treatment of RLS..."
*I went off it last month. Or was earlier this month? The days are so long and blurred together.
P.S. I just brought up Dr. Rye's page on the Emory website: I want to see him! Esp since he's a Chicagoan and so am I! It was meant to be. I am defnitely going to try to see him even if my rheumatologist gets me an infusion.
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SleepyBhamster
- Posts: 91
- Joined: Tue Aug 25, 2020 4:04 pm
- Location: Birmingham, Alabama, USA
Re: Has anyone arranged iron infusions on your own? How?
Last thing before I try to nap: even though Dr. Rye's page says he can see new patients within 3 days, that was completely false advertising (as I thought). They've got nothing at all for me, but the nice young lady who tried to help is sending a message to his team to see what they can do.
Crazy thing is that she said it appeared he could see me for a telehealth visit--but I had to be in the state of GA for it. We both wondered how they would know whether or not I was actually in the state of GA. But when she tried that option for me, there was nothing available as I said.
Crazy thing is that she said it appeared he could see me for a telehealth visit--but I had to be in the state of GA for it. We both wondered how they would know whether or not I was actually in the state of GA. But when she tried that option for me, there was nothing available as I said.