Iron infusion

[lorri214]

I had an iron infusion. Finished it last week. My ferritin was 44 prior to infusion. I have to have a blood test to see if it went up. Just curious how long before you feel better. I still feel the same, very tired. Came off mirapex a month ago and waiting for my dr. to give me a new medication. She mentioned gabapentin. I presently take oxycodone hcl. Anyone know when the infusion makes a difference in your rls???

[SueJohnson]

Wait 8 weeks before you have a new ferritin test.

Your doctor should have started you on gabapentin 3 weeks before you came off Mirapex and certainly should start you on it NOW. Call her up and get a prescription. It is going to take 3 weeks to be fully effective. Follow the advice I gave you before on starting dose, when to take it, when to start increasing it, etc.

Since you came off Mirapex too quickly it is going to take awhile for your symptoms to settle.

[lorri214 in reply to SueJohnson]

Does it take 8 weeks before you notice a difference

[SueJohnson in reply to lorri214]

It can take up to 8 weeks and remember only up to 60% of people get any improvement in their RLS by raising their ferritin and it also may take more than 1 infusion. That's why you need to start the gabapentin now.

[lorri214 in reply to SueJohnson]

You are amazing. How did you gain all this rls knowledge. Thank you for your help.

[SueJohnson in reply to lorri214]

I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.

[lorri214 in reply to SueJohnson]

Thank you Sue for helping so many of us.

[lorri214 in reply to SueJohnson]

I have been through a lot since then. Getting off mirapex was hell as you know. Now I am on methodone 10 mg a day. Doesn't work perfectly. My dr. spoke about putting me on gabapentin. Meanwhile I was admitted into the hospital because my feet were numb and my dr. wanted me to be observed. Well, the neurologists at the hospital decided it was neuropathy ( I am a diabetic). They gave me gabapentin to take 600 mg 2 capsules every 8 hours. So I will let my neurologist know and see if the gabapentin needs to be increased.( she doesn't take care of numbness. she is a sleep specialist .shes the one who wanted me to go the hospital. she was afraid the numbness might be guillian barr) So far, Idon't notice much of a difference in my rls or numbness in feet. I have only been taking it for 5 days so I am hopeful. What do you think?

[SueJohnson in reply to lorri214]

It takes 3 weeks to be fully effective. and for RLS it is the dose at night that counts so 600 mg is a low dose. After 3 weeks increase it by 100 mg every couple of days. Do you remember the directions I gave on taking it? If not, I will be glad to repeat them.

Or increase the methadone. According to the Mayo Algorithm the usual effective dose is 5 to 20 mg.

I hope your numbness improves after the 3 weeks.

[lorri214 in reply to SueJohnson]

I cannot change the dose without my dr approval. She is the one who gives me the prescriptions. I can tell her what you said and she has to decide.

[SueJohnson in reply to lorri214]

Show her the appropriate sections of the Mayo Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

[lorri214 in reply to SueJohnson]

I am so upset. Saw my neurologist today and she decided to prescribe me Horizant instead of gabapentin. My insurance doesnt cover Horizant. It will cost be $239. Thats ok if it works. Is there that much of a difference between gabapentin and Horizant. I will call my dr. tomorrow

[SueJohnson in reply to lorri214]

Horizant is basically gabapentin that lasts 24 hours which you don't really need since RLS is at night. Can you phone him/her and tell him/her this and insist that you want gabapentin since you can't afford Horizant.

[lorri214 in reply to SueJohnson]

Yes I plan to do this tomorrow. This is such an ordeal and I don't even know if the gabapentin would work. Her other choices are methodone or buprenorphine. She prefers to use them as a last resort. I don't care what she uses. Just get me rid of these restless legs. I cant take it.

[lorri214 in reply to SueJohnson]

My dr. wanted me to take horizant. They found a place where I could get it for $55 instead of $279. I ordered it. Will let you know how it works. I have my fingers crossed!!!

[SueJohnson in reply to lorri214]

Great! Take at 5:00 pm with food because the bioavailability is greatly increased (33% to 118%, depending on the meal's fat content. Hope it works for you.

[lorri214 in reply to SueJohnson]

tOOK the Horizant tonite right before dinner. I am now in agony. i can barely sit here and type this. Im loosing my mind. what can i do.

[Divii in reply to lorri214]

How r you now?

[Madlegs1]

What dose of oxycodone are you on.?Is it the short acting or extended release?

It should cover a lot of your symptoms. Depending on how you are taking it .

[lorri214 in reply to Madlegs1]

I take 4 tablets 5 mg each. oxycodone hcl. don't know if it is extended release.

[Madlegs1 in reply to lorri214]

They would be short term. Generally last for about 6 hours, although some people only get 4.

That is 20 mg of oxycodone per 24 hrs.

It should be well enough to give full relief for RLS.

Unless you are suffering severe triggers from something.

[Buddylove12 in reply to lorri214]

have you thought about asking to try methadone? I was on Mirapex but had to go off when it stopped working. I have had iron infusions as well, which made me less tired, but I’m not sure did much for my RLS. Methadone at 10 mg has been a miracle. Our foundation supports a register of patients using methadone for RLS successfully. The vast majority never need to increase the dose.

[lorri214 in reply to Buddylove12]

I saw the dr yesterday. She is putting me on gabapentin. If that doesn't work, she will try methodone or biprenorphine. Something has to work. I can't go on like this without sleep.

[lorri214 in reply to Buddylove12]

I'm interested in the methodone. Do you have any other conditions and how old are you. I have other issues and I am 77. Do you think that matters.

[TheDoDahMan in reply to lorri214]

I'm 79 and have been on 10mg methadone for over 5 years. Allows me a solid 8 hours of sleep when nothing else worked. It completely turned my life around. There are many here in the US who feel the same way.

[Buddylove12]

I am 58 and it is my only condition. Dr. John Winkleman is the expert on this. You can Google him and RLS registry to read all about it. It is a wonder drug for many many people and at low doses. I’m on 10mg.