Infusion #3

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
2restless
Posts: 25
Joined: Sun Jan 28, 2018 3:10 pm

Re: Infusion #3

Post by 2restless »

We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to fight to get the LMW iron as the pharmacist was not familiar with it and was concerned about anaphylaxis and wanted to give it over 8 hours. Got the protocol that Stanford and Johns Hopkins uses and that took care of that problem. Good luck, I hope you feel better.

ViewsAskew
Moderator
Posts: 16202
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Infusion #3

Post by ViewsAskew »

2restless wrote:We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to fight to get the LMW iron as the pharmacist was not familiar with it and was concerned about anaphylaxis and wanted to give it over 8 hours. Got the protocol that Stanford and Johns Hopkins uses and that took care of that problem. Good luck, I hope you feel better.
Yeah, the cost out of pocket is CRAZY!!!!

I had to explain it to this doc - but he really was on board when I showed him the study. I had the pages marked on my phone, so I could go right to the salient points. He read them and said yes.

So glad it worked so well for your husband!
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.

Oozz
Posts: 119
Joined: Wed Oct 11, 2017 8:09 pm

Re: Infusion #3

Post by Oozz »

ViewsAskew wrote:
2restless wrote:We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to fight to get the LMW iron as the pharmacist was not familiar with it and was concerned about anaphylaxis and wanted to give it over 8 hours. Got the protocol that Stanford and Johns Hopkins uses and that took care of that problem. Good luck, I hope you feel better.
Yeah, the cost out of pocket is CRAZY!!!!

I had to explain it to this doc - but he really was on board when I showed him the study. I had the pages marked on my phone, so I could go right to the salient points. He read them and said yes.

So glad it worked so well for your husband!
Hi, do you have early onset (<36 years) or late onset RLS?

Yankiwi
Posts: 454
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Infusion #3

Post by Yankiwi »

I haven't had an infusion but my iron is coming up with my iron prescription. Some must be getting through to my brain because my symptoms are not as bad but still regular through the night.

I must have late onset (around menopause) but it is hereditary. My dad had a bad case, most of my nine siblings and many cousins. Mine is the worst.

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