What To Do?

Use this forum to discuss any issues associated with Augmentation
timphillips
Posts: 17
Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

Badnights -

Thanks for the response and your help. After I spoke with the assistant, I sent the IV Iron article to my doctor.

I was informed that IV iron infusions are very rarely used in clinical practice because insurance does not pay for it. That patients can have very significant side effects from an infusion. My doc is willing to try and ordered additional blood work to see if IV iron is safe for me to receive.

So, good news, an IV Iron treatment is a possibility.

Do you have any information on the "very significant side effects?" How long do I need to be off DA before an infusion? The following tests have been ordered: CBC (package), Ferritin and Iron + TIBC. Are there any other tests? Will these tests provide the % saturation?

Assuming an infusion is in the thousands of dollars, not ten thousands, I have the financial means to pay for an infusion and/or a trip to see Dr B.

Thanks for the links.

badnights
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Re: What To Do?

Post by badnights »

I think the iron labs he ordered are sufficient; the transferrin saturation (or saturation index) can be calculated from the TIBC and serum Fe. Holland, if he sees this post, can verify that, he would know.

I also paid for my infusion. It was totally worth it to me. It was going to be $2xxx but jumped to $4xxx (almost 5000) the month before I got to CA. They had just instituted a policy whereby uninsured people had to pay the same price as insured people, and I got burned by that. But still, it was worth it. I had a very productive winter. I'm glad she's looking into infusions for you.

As for significant side effects, a substance called high molecular-weight iron dextran used to be the only choice, and caused anaphylactic shock in some infusion recipients. Not many, but the risk of death is pretty high with anaphylactic shock, so any risk is cause for grave concern. Around 2000, other substances started to become available, including low molecular-weight iron dextran, which doesn't carry the same risk for anaphylaxis. The thing was, for a while there - til at least 2008 but hopefully not now - doctors were ordering low molecular-weight iron dextran, but the pharmacists were sending the cheaper HMW iron dextran, (presumably because they weren't aware of the differences other than cost).

So now, even though LMW iron dextran is safe, some pharmacies won't carry it because of the confusion and danger. There are other iron salts and sugars that are used for infusions. I had iron carboxymaltose, markerted as Injectafer in the USA.
How long do I need to be off DA before an infusion?
I don't think you have to be. Maybe start reducing when you feel your symptoms start to improve, after the infusion. Always good to reduce if you can at any time, tho.
**** Maybe other members can share their opinions here. ****
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
Posts: 1140
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What To Do?

Post by stjohnh »

timphillips wrote:
Wed Oct 21, 2020 4:04 pm

I was informed that IV iron infusions are very rarely used in clinical practice because insurance does not pay for it. That patients can have very significant side effects from an infusion. My doc is willing to try and ordered additional blood work to see if IV iron is safe for me to receive.

So, good news, an IV Iron treatment is a possibility.
It is true that getting insurance to pay for IV iron for RLS can be a problem. This is because none of the current IV iron preparations has an FDA approved indication for RLS. They are all approved fro iron deficiency anemia, which most RLS patients do NOT have. The recommended preparation of IV iron for RLS is Injectafer. Cost in USA is about $1000-$2000 per infusion, and two are needed for course. I.E. $2000-$4000 per set. And if you respond, this will be repeated every year or so. So yes, paying for it can be a big problem.

Serious side effects are only a real problem with the old original IV Iron preparation, not used any more. The doc is referring to what he/she was taught in medical school years ago, and hasn't checked the newer prepartaions. You can see for yourself what the official labelling for side effects is by checking the FDA approved information supplied to doctors:https://www.accessdata.fda.gov/drugsatf ... 009lbl.pdf
Blessings,
Holland

timphillips
Posts: 17
Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

Thanks for the information!

I got blood test results yesterday. Here are the levels:

Component Your Value Standard Range
IRON 115 ug/dL 49 - 181 ug/dL
TIBC 274 ug/dL 261 - 462 ug/dL
IRON SATURATION 42 % 11 - 46 %

Here's an update on the progress of getting off pramipexole. I have been completely off for about 7 weeks. What a roller coaster ride. One night I might get 2-3 hours followed up by 4 or 5 the next. Prior to this, a typical night for me is 7 hours of sleep. About 5 nights ago I thought I had a break through with 9 hours sleep followed up by 7 hours the next night. It actually felt like the symptoms were leaving my body. Unfortunately, I was unable to maintain this. Last night was one of my worst. The RLS symptoms would not stop no matter what I tried. I will say with the exception of last night the intensity of RLS symptoms have been less.

stjohnh
Posts: 1140
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What To Do?

Post by stjohnh »

timphillips wrote:
Sat Nov 07, 2020 6:06 pm
Thanks for the information!

I got blood test results yesterday. Here are the levels:

Component Your Value Standard Range
IRON 115 ug/dL 49 - 181 ug/dL
TIBC 274 ug/dL 261 - 462 ug/dL
IRON SATURATION 42 % 11 - 46 %
What was the ferritin level?
Blessings,
Holland

timphillips
Posts: 17
Joined: Fri Apr 21, 2017 7:50 pm

Re: What To Do?

Post by timphillips »

Component Your Value Standard Range
FERRITIN 242.0 ng/mL 18.0 - 464.0 ng/mL

stjohnh
Posts: 1140
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What To Do?

Post by stjohnh »

Rats, The Guidelines call for a ferritin below 100 to qualify for an initial IV Iron infusion, can be up to 300 for subsequent infusions if the earlier ones provided relief.
Blessings,
Holland

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