Iron transfusion & iron therapy

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.
ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Iron transfusion & iron therapy

Post by ViewsAskew »

It can take 2-3 weeks.

If we could always get the iron to our brains, we'd be in great shape. Too bad they can't figure out how to make that happen.

In the meantime, it helps many at least somewhat - and that is a good thing.
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.

venus12
Posts: 9
Joined: Fri Mar 22, 2013 1:16 pm

Re: Iron transfusion & iron therapy

Post by venus12 »

just an update: at the two week point after infusion (lmw iron dextran: infed) no decrease in symtoms yet. Doc now wants bloodwork at the 4 week point instead of 8 weeks. will update if there are any changes in my symtoms. as a side note- i think i am going to ask to be checked for neuropathy.. i had thr nerve test done 6 years ago.. but want to check again.. something is just different about my feet this time around..

Polar Bear
Moderator
Posts: 8797
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Iron transfusion & iron therapy

Post by Polar Bear »

Good to go with your gut feeling... get checks :)
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Iron transfusion & iron therapy

Post by ViewsAskew »

I agree - our guts are not always right, but often are. Good idea to get it checked.
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.

dannajpettigrew
Posts: 2
Joined: Tue Apr 07, 2015 3:58 pm

Re: Iron transfusion & iron therapy

Post by dannajpettigrew »

I'm a 73 yr old female and was diagnosed with RLS at the age of 37. My Dr. called it Ekboms Disease but did know about the malady! I've been seen annually at Mayo - AZ and feel I've received the best of care. My Ferritin has always been 75+ until this past year. I'm now at 22 and dropping. My energy is gone in several hours, sleeping only 3 hours per night. This significant change occurred after I had chemotherapy/radiation for cancer (now in remission).

My problem is this: I suffer adverse reactions to most medications, and have had an anaphylactic reaction to a simple aspirin. Therefore, I take no OTC's and only prescribed medications after they have been researched by my Internal Physician or Mayo Neurologist. They have not been able to identify a safe way for me to get the iron infusionl The physicians state I "need " to have the iron infusion but will not proceed until they know what drug to use as prophylactic treatment before the injection to prevent a reaction. Benadryl is the drug of choice, but I have extreme increase in movement and shortness of breath when taking it (as well as no sleep and on my feet for hours).

I really need to know how to access the information I need. Help if possible!!!

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Iron transfusion & iron therapy

Post by Rustsmith »

A good place to start is the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. Get the Second Edition. It is available from Amazon for about $25.

As for your antihistamine prophylactic, an alternative to benedryl (which is a classical WED trigger) are the second generation antihistamines. These include Claratin and Allegra. The second generation drugs are the non-sedating ones and they are not supposed to cross the blood-brain barrier where they could trigger WED. Zyrtec is also a second generation drug, but some report that small amounts of it leak into the brain where it could cause problems to those who are particularly sensitive.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Iron transfusion & iron therapy

Post by ViewsAskew »

I wonder if the doctors at Johns Hopkins would have an answer? They have the most experience with our population. You could try to email or call them and ask for their help.
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.

dannajpettigrew
Posts: 2
Joined: Tue Apr 07, 2015 3:58 pm

Re: Iron transfusion & iron therapy

Post by dannajpettigrew »

I have learned much by reading all the posts regarding iron infusion. I've been referred to a hematologist and will work through him, hoping he will contact Dr. Early regarding his protocol. Thank you. :roll:

Post Reply