finished with Venofer infusions

[pamndorr]

Well I had my final venofer infusion(iron) 2 weeks ago. Dr. wanted to do 6 treatments but the all knowing insurance co said they would only ok 4 treatments...and that was after the dr had to make numerous calls to the insurance co dr. to explain why he wanted it done and then they only said ok because he told them that his back was against the wall and he didn't know what else to do except send me on to John Hopkins.

I will say that the infusions did knock the discomfort down some...actually the night of each infusion I sat still for a whole night..feet up and all!!! But then gradually it came back. The rls has spread to my arms..and the infusions did take care of that..for now. But the legs not so much. We wont recheck my ferritin levels again for another month or two and then willl know more I guess. Dr. did tell me that he was happy with the progress..he said it was the first time in the 8 months that he has been treating me that I actually sat still in a chair and didnt bounce all the time!! He also told me that I have the worse case of rls that this group of 5 drs has ever seen....lucky me I guess..lol.

He did change my meds again...seems to be a monthly thing anymore. Seems like I do pretty good on a med for a very short time...weeks...then they stop working or start working against me. So right now I am back on Mirapex ER...which I was on a few months ago and had all kinds of strange side effects but hoping since the infusions will do better this time...but as of now..not so good. I was at least getting 4 hrs sleep before the med change now back to 2 hrs a night. One reason for the med change from regular Mirapex to the ER because all of a sudden I have started to black out for anywhere from seconds to 5-10 minutes at a time....hubby says he couldnt wake me up when it happens. So I guess dr thinking is if I get some of the drug throughout the day instead of all at once in the evening maybe I wont black out anymore...but I did again last night. So I decided to try taking it earlier in the day today and see what happens.

So my take on the infusions is that they did help some so it probably is worth a try if ferritin levels are low. From what my dr. said most all the others that have had the infusions it helped a lot...I just have a more resistant case of rls.

I also will say that after fighting this for the last 5 years or so and this last year being awful...I am ready to give up...I am tired all the time..I am cunfused all the time...and I am bored out of what little mind I have left...I force myself every day to go out and walk...that I do enjoy doing once I get going....I walk back in the woods where it is peaceful and nobody around but me and the dogs and nature.

Thanks for listening and for letting me vent some. I don't like talking to other people about rls much....they just dont understand it..I dont think you can till you have lived with it.

[ViewsAskew]

I started to cry reading your post. I wish I couldn't understand, but oh, I do so well.

I wish I knew how to help - you, me, and all the rest of us.

I can imagine that the blacking out is very disconcerting. Instead of Mirapex, there is another Parkinson's drug that hasn't yet been used in RLS but that may help us. It's called Rasagaline (hope I am remembering the spelling correctly). It doesn't increase dopamine like the DAs do, but rather keeps what's already there from going away. Since we have a regulation issue, they think, this may be a great thing. There is a study underway, but I imagine a doctor could write off label given that other Parkinson drugs are used for RLS. It's another option we didn't have before, at any rate.

Per the infusions, the last stats I read (and this was quite awhile ago, so they may have changed) showed 20% of people were helped completely - RLS gone - and another 40% were helped some. The remaining 40% were not helped at all. So, that you're in that middle 40% is very good. We all hope for that 20%, I know. I dream of having them and waking up with no RLS.

[Polar Bear]

Pam, such a poignant post, I understand exactly what you are saying.

You are so right...... unless you've 'got it', you don't 'get it'. !!

It's great that you have been able to try the infusions and have had some positive response.

[Betty/WV]

Pam: I know exactly how you feel and I am sure many others on this site do too. How many times I just wanted to give up. Then I would get my second wind and start fighting again. RLS is so debilitating. Like you I sleep only about 2 hours at a time.

I get to feeling good about my meds when they work, then when they aren't working anymore is when I want to give up.

My sleep doctor, who had me do a sleep study and found out I had sleep apnea, has had a massive stroke. And a new doctor is taking over his patients. I'm nervous about that.

It seems all we can do for each other is to be there, sometimes we can help by telling what works or doesn't for us./

I think the biggest help, is just being able to come here and vent. And we know that those reading our posts understand. Which is usually more than we can say for those around us, friends and family.

Don't give up, keep fighting and in our own way we will be fighting for and with you.

BETTY/WV

[badnights]

Hi Pam. It's good to post here when you're going nuts, I've done it and I'm sure I'll do it again. No one else in my world understands what RLS does to you, how it sucks the life right out of you and leaves a shell walking around that looks like you but can't be you. There's magic in having people just simply understand you. I have no idea why it helps, but it's powerful. So come here as often as you need.

Despite your clear grief and misery, I'm happy you have a doctor who knows how to treat RLS. I don't think I can even get iron infusions in Canada. Have you tried opiods? You didn't mention that in your post.

[pamndorr]

Well it has been about 2 months since I finished the infusions. I guess they did help some....so it probably was a good idea to do them...at this point anything that will calm this down is worth a try. I had my ferritin levels checked again last week but havent heard anything back yet. I go tomorrow for a sleep study....I wake up after a couple hours of sleep and not sure why...sometimes I can go back to sleep but most of the time not.

I really am sorry it takes me so long to answer back to these posts....but this is how my life goes now. I will think about doing something and then before I realize it another day is gone....and I am not sure where they go. I am sure its a combination of drugs and no sleep and me being a zombie most of the time. I so much want to go back to work but it just isn't looking like that is going to happen....and that does not make me happy...I loved my job...but if I cant concentrate and follow through on things then I am not much help to anyone....this really sucks I am only 53 I am supposed to work still.

So for today...I am actually having a fairly good day. I took Ambien last night and slept for 4 hours....that is good for me. Cant say I like the ambien hangover but it is worth it for a few good hours in bed...but if I take the ambien too many nights in a row then I end up an emotional mess...crying,depressed,feeling sorry for myself....and the list goes on. I am bad enough with all the above but when I take the sleeping aids then my emotions get out of control. Seems like I have been on every drug there is to control this disorder...and had somekind of a bad side effect to them all. Not the disorder to have if you are drug sensitive...which I appear to be....lucky me!!!

Right now my main concern is to hold off the augmenting and rebounding...which I did at the same time last summer...not a good thing! I am just so grateful for my dr....he is on top of things and is doing everything he can to hold off what is most certainly going to happen again...I just want to make it through the summer without going back on the methadone....

So for now...I guess I am doing better then before....at least I have some good days...and that is all I can hope for these days. I am little by little having to increase my Mirapex ER dose...I do 1.5mg now and have added regular Mirapex .5mg 1-2 times a night...depending on how I am doing. I also take Motrin 800mg 2 x day and the Ambien 5-10mg at night. And on the real bad days/nights...tramadole 50mg. So I guess my drug regimine isn't too bad right now...it has been worse!!

Thanks again for listening to me...you all are really life savers. It helps to have people that can understand....and nobody can understand unless they have walked in our shoes!!!
Have a good day everybody!!

[Chipmunk]

There is a study around (citation anyone?) on IV iron that showed that RLS sufferers dropped their iron levels much more quickly than normal after an infusion. If you did get partial relief from the IV iron then starting a daily iron regimen might keep symptoms improved for longer.

[ViewsAskew]

tracy, not sure of the citation. I learned of this when I was at one of the RLS conferences a few years ago. They study researchers shared that info.

As a general rule, people "lost" their iron within a few months! It took 2-3 infusions before they seemed to "keep" their iron for a significant time period. I haven't heard anything since, so don't know how long the people "kept" the iron after that 2nd or 3rd infusion.

[Chipmunk]

Found it - here is the citation and a quote about the drop in iron levels.

From Earley, Heckler, and Allen; Sleep Medicine; November 2004; Volume 5, Issue 6, p. 613.

Human iron-isotope studies have demonstrated that iron
is excreted at a very consistent rate of 0.8–1 mg per day
across a wide range of ethnically and racially diverse
populations. The only exception found was the Bantu of
Africa, who had rates of 4 mg iron loss per day [18].
A 10 mg absolute body storage loss of iron should result in
an approximate 1-mcg/l drop in ferritin, assuming no
current significant inflammatory process (ferritin is an acute
phase reactant that increases during an inflammatory
process). If it is assumed that the predicted excretion of
iron (0.8–1 mg/day) occurs without further iron absorption,
then the predicted drop in ferritin would be 1.0 mcg/l per
10–14 days [1]. The subjects in this study had ferritin
reduction of 2.3 to 11.6 mcg/l per week. The drops in
ferritin seen in these subjects continued in a nearly linear
manner for the duration of the study, and therefore could not
simply be part of acute phase reaction. The drop in iron
would explain why 1000 mg of iron did not produce at least
500–1000 days of benefits.

I wonder why the RLS people dropped iron levels at a rate of between 2 times to as much as 11 times as quickly as expected? So strange.

[ViewsAskew]

They wonder too....at the conference, I remember them saying they thought it might be part of the disease.

[pamndorr]

Dr. office called yesterday to set appt. to go over sleep study....the nurse told me on the phone that I do not have sleep apnea or PLMD...but didnt say anything else...I am guessing it is my meds that keep me awake. I have an appt. April 1 to see Dr.
She told me my ferritin level is now at 189...then she said it was too high and asked if I was taking any iron supplements....and I am not. So I really dont know what all this means. I thought they wanted it high...Dr. said over 100 is what they like to see it for RLS patients....I am thinking that it being high isn't a problem or the doc would have called me and said something....I will say that since the infusions I have been having female issues....not alot of fun!! Not sure if it has anything to do with the infusions but kinda strange that things changed after the infusions...
As for the RLS symptoms....things are still much better then they were before the infusions....still here but not driving me crazy. I have also started back with accupuncture...I will do most anything to keep those feelings from coming back full force....

[ViewsAskew]

I don't think that 189 is too high...the range varies based on who's doing the test, but the high range is usually between 225 and 300.

And, with RLS? Definitely not too high! It will probably go down over time, at least some.

How interesting (but not at all fun) about the female issues...I wonder if anyone else noticed that?

[pamndorr]

Wow....time seems to just disappear on me. I meant to be back here a long time ago and then I get distracted and before I know it another day is gone and I don't know where it went....must be lack of sleep.

I got my sleep study results....I just don't sleep...at least not much. I had to stay hooked to the wires for 6 hours for insurance purposes. In that 6 hours I stayed in stage one and two of sleep. About 4!/2 hours into I did reach stage 4 for about 30 min and then woke up and back into stage one and two for the remainder of the study. I fall asleep within 60 seconds of laying down and then just stay in and out of sleep most of the night..and I did take my ambien when I went to bed.. It is not PLMD or sleep apnea.....just me and I am thinking my meds.

So dr. wanted me to try yet another med...he wants me to sleep. I swear I didnt think there was a worse drug then the Methadone I was on last summer....until he gave me Temazepam to take for sleep. It was awful. I was sick on the methadone..but this stuff I was sick and couldnt move. Then I read the warnings that come with this drug...not anything I want to even chance. Plus I am on Mirapex ER and I am having all kinds of side effects from that....like gambling and shopping...the shopping I take care of by going to the thrift stores and buying stuff and then I got a junk booth and I take it and resell it....and the gambling would have been ok..unitl they opened a casino about 15 minutes away from me...so now I go to acupunture once a week and then take 25.00 and go to the casino and play until I lose it...strangest feeling I have ever had when I get that feeling like I must shop or gamble.

The dr. did tell me to apply for disability....he said he didnt see me ever going back to work...he says I will most likely have to change drugs often and I just don't do well with any of these drugs...plus he says he wouldnt want me on the roads when I am tired....and if I had to be someplace first thing in the morning....that is when I am the most tired. He also said that this will most likely get worse as I age...God I hope he is wrong....I cant take much more....I dont know who I am anymore...there are days I feel lke I have gotten lost and just cant find my way back to who I used to be....Jeez at this point I have almost forgotten who I used to be....the person sitting here typing this is not the person I was before RLS.

Well..again thanks for listening....life is kinda rough right now but things have to get better...right?

[badnights]

For sure things can get better. You hang in there and keep trying things! Don't think about work right now, think about getting functional again. I had my disability papers half filled out but ended up not needing them (so far), I'm back at work and almost like my old self.

Maybe ask your doctor if you can try different sleeping meds. The Temazepam is pretty strong but maybe he just wanted you to use it til you recovered enough sleep to function again. Have you tried clonazepam (Klonopin), which is a benzodiazepene like Temazepam, but maybe it won't make you sick? Or eszopiclone (Lunesta) might be good; like Ambien, it's not a benzodaizepene, so maybe it's less likely to make you sick. It's pretty important to start sleeping again; it's a killer to have the feelings stopped but still be unable to sleep, so put whatever effort you can into finding a sleeping med that will work for you. .... If only it were faster to get feedback on a drug's efficacy to your doctor so you could move on to trying something else.

As for the RLS drugs, what else have you tried? Methadone made you sick, and since you've developed Impulse Control disorder on Mirapex you probably want to avoid Requip too. But what about other opiods? Each one will have different side effects in you, and there are a lot of them, so quite likely one of them will be tolerable. If not one by itself, then a rotating schedule with a different drug, like ViewsAskew/Ann and others do. You haven't exhausted your options yet.

I think you should discuss taking oral iron again with your doctor. who knows... maybe for you, 189 is low???? I know nothing.... but I wonder.

You hang on and remember who you used to be, because all the good parts of you are lurking there inside you still. All you need is sleep to be real again; keep working with your doctors and you'll figure out how to get it.

[pamndorr]

Thanks Beth and everybody for the input. I actually have been on all of the meds that you have mentioned in the last few years. Most of them don't do a thing to help and the ones that do make me sick. I have always had a hard time with different medications...bad side effects to most things. My dad was the same way and so is my sister.

So far the only meds that work to control the rls are the mirapex and requip which I have been alternating between...I have had to go through 2 drug holidays now and not looking forward to another one. I try to keep the dose of the meds as low as I can so I dont have to switch drugs too soon.

I cant imagine what people did years ago before they knew anything about this stuff. My guess is that some people just gave up and ended the pain themselves...or went crazy from it. Each time I get too down the hubby likes to remind me that there are some people out there with this disease that dont have insurance to help and how lucky I really am to have the medical care I need and able to afford all the med changes...So I do know it could be worse.....and it was worse until I found the doctor that I have now....I cant believe how many docs I have seen for this over the last 3-4 years that really didnt know how to treat it...I felt like a lab experiment for awhile there....so many different drugs thrown at me.

This doc now seems to know more than all of the rest of them put together...plus as he puts it...I have 5 doctors not just him...I have been the discussion of their weekly meeting in that office for the last 10 months and I see him every month...and he has promised me he wouldnt just shove me off to another doc...he says if he cant get it under control then he will send me to John Hopkins or U of M....he is the best doc I have ever met....very kind and he really does care and you can just tell he likes what he does....I really never thought a sleep doctor would be the one to help me the most. If they gave awards or recognition to docs that go above and beyound he would certantly have to be included in that.

Well the sun is coming up and I guess I will start my day. Actually my day started around 4am when I got up....but not much to do at that time of the morning but play the silly Zynga games on Facebook...although looking at my farms and citys on there you can tell how badly I need my Adderall...everything is half started and then I go onto something else...my house is the same way...1/2 finished projects all over the place and I just cant seem to finish any of them....and looks like I am not going to get my Adderall back....he thinks it just causes more problems with the rls....

Thanks again....