Meds and Ferritin

Jodee · Post by **Jodee** » Thu Sep 11, 2008 4:44 am

Hi, I'm new at posting, but have been lurking for awhile! After augmenting on Requip, I went off it 2 months ago with the help of Methadone. It was terrible, but things got better after a couple of weeks. However, I didn't like how the Methadone made me feel (tired), so Dr. switched me to Oxycodone. That was horrible and felt like I was going off Requip again. Went back to Methadone and now he's got me on Methadone and Lyrica. Last night I was up all night, so I'm really wondering if anything is going to work for me. Every night I'm awake, cleaning the house. I'm also wondering if my problems (and my very clean house) are because of my low ferritin level. Thanks for any help.

Post by **ViewsAskew** » Thu Sep 11, 2008 5:41 am

It is so hard to find something that works...

I can honestly say that while my RLS is under control 90% of the time, I wish I had other choices. I am not the person I "used" to be. Drugs are not perfect for many of us, leaving us with difficult choices. We can get rid of the RLS at the cost of:

Ability to fall asleep
Ability to stay awake
Propensity toward addictive behavior
Desire (to accomplish, to dream, for our partners, for life)

And many, many others.

Sometimes, the side effects do lessen in intensity over time. Sometimes we find a combination (as you've been trying) that reduces the side effects from each drug so we can live with it. Sometimes we have to keep trying, over and over. Sometimes we just settle.

The good news is that there are so many potential drugs to try that it's possible that you can find a combo that works. That in itself can be so tiring and daunting, however, that you don't even want to embark down that road.

I hope you keep sharing your journey with us. Believe it or not, it helps me to fortify my resolve to find a way to have the life I deserve...not the life I happen to have.

Sojourner · Post by **Sojourner** » Thu Sep 11, 2008 5:03 pm

J, Ditto what Ann said. Finding the "right stuff" can be frustrating. The good think I take from your post is that you seem to have a doc who is working with you and trying to help you find the "right stuff." That's good.

Best wishes,

M.

Jodee · Post by **Jodee** » Thu Sep 11, 2008 5:08 pm

Thank you both. It's so comforting to hear from someone who understands what it feels like. I've never meet anyone that has it like this, but from reading the board I can see there are a few of us out there. Sometimes I feel like such a freak, it's maddening. I'm not the person I used to be either and I hate that. I've always been the sporty girl, running, playing soccer, coaching my kids. If you had told me 5 years ago that I'd be trying all these drugs (Methadone!) and getting iron infusions, I would've said you're crazy!

Jodee

Post by **ViewsAskew** » Thu Sep 11, 2008 6:40 pm

Jodee, ditto what you said! It's totally nuts sometimes. I don't even tell most people about it, except DH and best friend. The rest? I just share bits and pieces otherwise it gets even crazier.

Jodee · Post by **Jodee** » Thu Sep 11, 2008 9:00 pm

Have any of you ever just gone off the meds completely? I'm thinking it can't be any worse. And I keep seeing ferritin everywhere on these boards. If I can get my ferritin level up, can I stop taking these drugs? I suppose these are questions for my doctor; just wondering if any of you have had this experience. And does low ferritin cause RLS or does RLS cause low ferritin? My hematologist said ferritin level doesn't tell us anything, i.e., it's pointless to test it, in his mind. But he said he'd be a team player and test it for my RLS doctor. Sheesh!

Aiken · Post by **Aiken** » Fri Sep 12, 2008 12:55 am

I went off of all of my meds last year. It was horrific.

A higher ferritin level makes a huge difference to some people, and none to others. All you can do is try. (I still have a theory that RLS is actually at least two different diseases that have the same net result.)

Jodee · Post by **Jodee** » Fri Sep 12, 2008 3:39 am

Aiken - May I ask what meds you went off and for how long? I'm guessing you don't recommend it? My doctor doesn't recommend it, but he's also very interested in seeing how I do when my ferritin level goes up since I'm starting at 1. But I'm not sure how to measure the progress if I'm on all these meds. So confusing! Thanks so much for your help.

Jodee

SquirmingSusan · Post by **SquirmingSusan** » Fri Sep 12, 2008 4:20 am

Jodee wrote:Have any of you ever just gone off the meds completely? I'm thinking it can't be any worse. And I keep seeing ferritin everywhere on these boards. If I can get my ferritin level up, can I stop taking these drugs? I suppose these are questions for my doctor; just wondering if any of you have had this experience. And does low ferritin cause RLS or does RLS cause low ferritin? My hematologist said ferritin level doesn't tell us anything, i.e., it's pointless to test it, in his mind. But he said he'd be a team player and test it for my RLS doctor. Sheesh!

I can't make it for more than 24 hours without my methadone. I'd crawl right out of my skin. I have gone through periods where I've quit taking everything else except my thyroid hormone, though. The first thing that happens is that I get horrific heartburn, so I start taking the omeprazole pretty quick. After about a month off my antidepressant my mood crashes all of a sudden... Allergy meds, well, I can go for a long time without them depending on the time of year.

And quitting everything doesn't help me sleep, but once in a while I have to check it out.

I'm one who responds very well to having adequate iron in my system, but not everyone does. It's worth a try, though.

Aiken · Post by **Aiken** » Fri Sep 12, 2008 11:03 pm

Jodee wrote:Aiken - May I ask what meds you went off and for how long?

I first went off of darvon/propoxyphene, an opioid, which caused no apparent withdrawal, but allowed my RLS to come back full force, with PLMs.

Later, I went off of tramadol, which was bad enough by itself, but when the withdrawal was over, I had the full RLS again, and it sucked again.

In both cases, I basically stopped sleeping. Maybe an hour, maybe two tops, and that was scattered across fragments of sleep.

I think I'm pretty spoiled by my meds. I suspect that the RLS I have now is worse than what it used to be, but I bet if I had gradually gotten used to it as it grew, it would be more tolerable than it is when I'm suddenly thrown back into it.

Jodee · Post by **Jodee** » Sat Sep 13, 2008 8:51 am

Thanks so much for sharing your experiences. It's very helpful. I've never even heard of the drugs mentioned in these posts, but I guess it's time to get educated.

Neco · Post by **Neco** » Sat Sep 13, 2008 11:06 am

If you don't mind my asking.. How much methadone do you take at a time?

It usually takes 10 - 15mg to hold me over for about a whole day.

Jodee · Post by **Jodee** » Sat Sep 13, 2008 10:38 pm

Right now 5mg methadone and 150mg lyrica, which is helping me get 4-6 hrs of sleep. My dr. said I could increase the methadone to 10mg, and when I do that I sleep better but feel like a zombie all day. After my requip ordeal, I'm scared to increase meds. Is that stupid? I don't have any experience with drugs except requip.

Jodee · Post by **Jodee** » Mon Sep 15, 2008 4:43 pm

Well, I guess I have the answer to my original question, which was if my low ferritin level was preventing meds from helping me. I just learned that after 2 iron infusions, my ferritin has gone from 1 to 137. It hasn't made a difference though, and the dr. thinks I need to get it over 200 to see improvement. Not sure how to do that, though, since I'm not having any more infusions.

SquirmingSusan · Post by **SquirmingSusan** » Mon Sep 15, 2008 9:19 pm

Wow, that's an impressive bump in ferritin levels! At least your doctor seems willing to work with you to do what it takes to get this under control. I hope something works soon to give you the relief you need.