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.
Iron transfusion & iron therapy
-
- Moderator
- Posts: 16570
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Re: Iron transfusion & iron therapy
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.
Re: Iron transfusion & iron therapy
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..
-
- Moderator
- Posts: 8797
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Re: Iron transfusion & iron therapy
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
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
-
- Moderator
- Posts: 16570
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Re: Iron transfusion & iron therapy
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.
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.
-
- Posts: 2
- Joined: Tue Apr 07, 2015 3:58 pm
Re: Iron transfusion & iron therapy
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!!!
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!!!
-
- Moderator
- Posts: 6476
- Joined: Sat Sep 28, 2013 9:31 pm
- Location: Colorado Springs, Colorado
Re: Iron transfusion & iron therapy
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.
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.
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.
-
- Moderator
- Posts: 16570
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Re: Iron transfusion & iron therapy
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.
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.
-
- Posts: 2
- Joined: Tue Apr 07, 2015 3:58 pm
Re: Iron transfusion & iron therapy
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.