Retitled: Phase II, let it begin.

[Joanie60]

About a week ago - probably on New Year's Eve - I located the 8 doctors in my new insurance plan who are covered and who are hematologists. I discounted the ones that were over 55 - sounds mean, but so many of us have had better luck with younger docs who are more willing. I narrowed it to two and sent them both emails. The first one was intercepted by scheduling staff and it never got to the doc. They just wanted me to make an appointment. I'm not going to do that! I'll have to see what I can do to get around the staff.

But, today, I heard from the other doc. He said he wasn't clear on how it helped, but he WAS WILLING to review the literature and work with me. I can't tell you how much better I feel. He said insurance could be an issue. If any of the rest of you have had them covered, how was it coded? How did you convince the insurance to cover it? I copied Dr B on the email - I need the protocols and all the studies related to send to this doctor. Hopefully he has them for me.

I am not sure where you live. I had an iron infusion here in the Baltimore area (I can send you the docs info if you like). My hematologist was wonderful, he is very enthusiastic about iron infusion and RLS, and my insurance covered the procedure,which was less than a hour!! Unfortunately, although it raised my ferritin levels from 20 to 200 (or something like that), it did not stop my symptoms.

The other thing we have going on here is a clinical trial that I am too chicken to do, but may be perfect for you. The clinical trial team helps you wean off all meds, you have to STAY off them for 10 days, then check into the hospital for 3 days for tests and research. I could handle the 3 days in the hospital but 10 days with no meds? I would not be able to work at all. As I recall, they are also looking for "healthy" control patients and may have asked if I wanted to bring a non-RLS person with me for the hospital stay (sorry, can't remember exactly about that)

I am a little vague on the details, I spoke to one of the coordinators several months ago, but here is a link with contact information:
http://clinicaltrials.gov/ct2/show/NCT0 ... and&rank=2

I have always been compensated for travel expenses for the Allen/Earley trials but I doubt they will pay for a plane ticket But thought I would throw it out there in case you have family in the DC/Baltimore area!

Let us know when you go drug free!! I know you'll get lots of moral support from us...for what it's worth!

Joanie

[ViewsAskew]

Thanks, Joanie. I'd be willing to do it - and pay for the trip - but everytime I've read the requirements, they want people on "normal" sleep schedules. I've not slept during 10 or 11 PM to 6 or 7 AM for many, many years. My normal schedule lately is 9 AM to 6 PM .

I have to call/email Earley - maybe I'll ask him about that as an option.

[ViewsAskew]

OK - time for an update.

I went to California for my annual visit to Dr B - left last Sunday, appt on Monday. I asked husband to come to appt with me to make sure we both were aware of what I might have to do.

Turns out Dr B follows a differnt protocol than Dr Earley. He doesn't suggest coming off of meds. he said that Dr Earley was a "purist" in the sense of following a strict protocol so you could be sure of cause and effect. Dr B said to get the infusion and 1 to 2 weeks later, take my first dose later and see what happens - he said I'll be able to tell very quickly this way - and that makes sense to me!

As we were about to leave, Dr B mentioned a new service he's using in So Cal. He prescribes the infusion to a pharmacy who sends the drugs overnight to the person's house. Then, a nurse comes to the house and administers. The cost? he wasn't sure, but said significantly less than when you go to a facility. My husband then asked if we could try it and see if they could schedule me before we left. I never would have asked that!

We asked Dr B's office mgr how much - she contacted the company and they said it would be between $450 and $550 for me to pay directly (no insurance - it won't work here because it only is for the state I live in) and that they thought they might be able to find a nurse to do it before I was going to leave. We said YES! It would cost $2000 or more for me to do it where I live because I'd have to do it at a facility. And, I am not sure the insurance will cover it anyway and I have a $1500 deductible - so I'm paying for it anyway.

Amazingly, the were able to take my ferritin test that afternoon, results delivered the next day. The pharmacy did find a nurse who would go to the house where we were staying. As of 3 PM on Wednesday, the nurse was at the house and I was getting an infusion!!!!! I didn't react to it - but included in the kit they sent to the house was a set of drugs to use in case I went into anaphylaxis, lol. She monitiored me very closely, taking my BP about 10 times and asking me endless questions. It took about 90 minutes for all the IV to get into my bloodstream and I got WED about 35 minutes into it. That was not fun, but I took drugs and it got better. What was interesting was that my BP was 112/72, then 98/64 for the two readings right before the WED started. After the WED started my BP was 141/83!!!! I guess that this disease may be more stressful to our hearts than we imagine. After the meds kicked in, it went down to 126/75 for the next reading.

I'll be on the lookout for lessening symptoms and write about it here.

Oh - one other thing. I asked Dr B about the glutamate study. he said that the ONLY way that they know how to reduce the glutamate is to take a alpha 2 delta ligand - gabapentin, gabapentin encarbil, etc,. Reducing it in the diet isn't viable - because that doesn't affect the level's in the brain and they don't know of anything else that may work. So, for those of us who get depressed taking these drugs, there isn''t anything we can do at the moment. he did say that since Lyrica comes in the smallest dose - something like 25 mg - that it may be worth trying to see if it helps but doesn't trigger the depression.

More in a couple of weeks.

[cornelia]

I think it is fantastic that you could take the infusion right away and so much cheaper! I hope it is going to work for you, you deserve that.
Isn't it remarkable that drs B and E take these different views on what to do with your meds when getting an iron transfusion? Isn't it also a shame that you didn't know before that you didn't have to come off all meds and that you suffered much because of the anxiety to have to undergo that?

I hope to get positive news from you.
Corrie

[Rustsmith]

It's great that you were able to get the infusion while you were still in CA. I hope that it provides you the relief that you are hoping for.

I also find the way that you BP bounced around very interesting. Maybe it is an example of why we can have hypotension while the life expectancy study published last year showed long term cardiac and hypertension issues. It sort of makes sense if you consider the stress and increased physical activity during bouts of WED.

[ViewsAskew]

Corrie, I thought the same thing - I wish i'd have known!!!!! I'd have done it already, too, though it is much better having worked out this way.

Steve, I also found that interesting about the BP. my BP is usually low, but clearly it's not low when the sensations are driving me batty! What surprised me was just how high it was.

[ViewsAskew]

Well, Day Three and counting. On the plane trip home last night, I took 4/5 of my normal meds and slept for about 2 hours. I awakened with mild symptoms, so took my final dose. I was hoping that this might mean I need less, lol, but it's too early to tell. Dr B said the fastest he's seen is a week, the longest 5 weeks (IIRC), the average 3 to 4.

I can't say enough about using a home health care nurse to do this. It saved me a lot of money, was done in the privacy of my home (well, not mine, but essentially), and was very comfortable compared to doing it in a facility. If you are considering this, do find out if there is a service such as this where you are. Dr B called it in to a pharmacy. The pharmacy found a nurse who specializes in infusions to come and adminsiter it.

He also told me there is a NEW iron infusion (unsure if infusion or other method) that is administered in minutes. I haven't a clue what it is. It's either a new type or new method - I searched a bit and couldn't find what it is.

[Polar Bear]

I'm really happy that this trip has been so positive, and information about your experience will be of such benefit to others.

[ViewsAskew]

I emailed Esmeralda (Dr B's office manager) and she sent my ferritin results this morning - 13! (and that is supposedly normal). The first time it was checked it was 8. Next time, with oral iron, it was 18, I think. At one point, it got up to 34. I took iron regularly for two years. I stopped a few months ago in case a local doc wouldn't do an infusion if it was over 50. Guess I didn't need to worry! Two years of taking oral iron, and I stop for a few months and it's 13. I wonder how low it would be if I'd not taken the iron at all?

At any rate, glad to know what it was. I also emailed Dr B and he said he normally takes the next test either if it doesn't work at all, or in 3 months, if it does work.

I'm having a hard time waiting and not getting my hopes up. I'm a bit depressed today - expecting results that aren't happening yet. I keep telling myself that A) It's not even been a week, B) that iron has to get to my brain, C) that the fastest result is a week and and average is 3 to 4 weeks.

I can't help but think of badnight's and QyX's recent posts about how hard this is to accept. We keep clutching at straws, trying anything to make it better, never giving up. When we try things, it is SO difficult to not be hopeful. How many times are our hopes dashed? Yet, after ten years of craziness, I STILL haven't learned this! Maybe it it part of the normal human condition - without it, we'd give up and die. Right now, I could use a bit less of it, though.

[Polar Bear]

Your head knows the facts - average is 3 to 4 weeks. Fastest result is 1 week.
Perhaps you've hit a wee anti-climax after seeing Dr B and the joy of your immediate infusion. Now...... it's.... the.....waiting...... game.
That's the toughie. While we are waiting we have no knowledge of what will be and we have no control.

The African Violets could be getting a lot of attention to pass the time

[EeFall]

I am very happy that you were able to make the trip to see Dr B and get the infusion. I actually ended up getting 3 infusions before I even knew about Dr E and my numbers went up to 335. It didn't do much for me but how would I know for sure? Right now the Suboxone I am taking is allowing me to sleep 5 or 6 hours a night but maybe if I hadn't had the infusions that the Suboxone might not have worked at all. My doctor here gave up when the infusions didn't make a difference and my RLS was actually becoming worse. He said out of the thousands of patients that his colleague and him had seen they had never seen it so bad. That is when he sent me to Dr E.

His detox plan was difficult to get through, an understatement to say the least, but it would have worked if I had been able to use methadone by itself. Methadone is great for RLS but not so great for sleep with the hyper-alertness thing. Adding Lyrica back so I could sleep would have worked also if it were not for the fact that the Lyrica made me mean spirited, also an understatement. So far Suboxone is allowing me to have NO RLS symptoms by taking it once a day, I sleep 5 or 6 hours a night (but I also have severe obstructive sleep apnea and light central apnea too so I have to use a VPAP machine). The main thing though is that it allows me to work and as the weeks go by I find that I am getting back to things I enjoy doing.

Unless a cure is found though I know this is the best it will be. I am just hoping to hold out working a few more years and then retire. Life would be so much more pleasant without having to work but it won't be that much longer. There seems like there is always something else that will work. If the Suboxone stops working (that would surprise me) then morphine no doubt would work. I hope the infusions work for you, it would be a real blessing. If they don't work totally, maybe they will help with the medications. It must have a lot to do with luck (genes I suppose), wishing you all the luck in the world!

[ViewsAskew]

In many ways, I'm in the same place as you.
1. I can't use the DA because of augmentation
2. The alpha2 delta ligands (gabapentin and similar) do not work for me to solve the WED.
3. Of the several opioids I've tried, only methadone has tolerable side effects , but I'm up all night and can't sleep.
4. The alpha 2 delta ligands do help me sleep, but they cause depression and I sleep for 16 hours after I take them.

It really feels as if everything conspires against us, doesn't it?

We know that for 20% of us, the iron doesn't appear to get into our brains well enough to solve the problem. If I'm in the 80% that it helps, I don't know if it will help enough to reduce the meds enough to solve the sleepiness issue. Dr B thinks we might be able to use the smallest dose of Lyrica to help me sleep but still avoid the depression issues. I'm willing to try, but not optimistic. If this is how it is, I have to figure out how I can reinvent myself. I suppose I could tell my husband that I give up and he has to work for both of us. He is doing OK on the work front, but it would mean a significant decrease in our retirement savings if I can't work for 20 more years. I'm middle-aged - not close to retirement. To lose that income may make it difficult for us to manage.

In some ways, I almost hope it doesn't work. I have no idea of how to reinvent myself, but I can't stand myself the way I am! I need to let go of who I was and move on. It's time to figure out how to be successful AND be chronically ill AND enjoy it .

[EeFall]

In some ways, I almost hope it doesn't work. I have no idea of how to reinvent myself, but I can't stand myself the way I am! I need to let go of who I was and move on. It's time to figure out how to be successful AND be chronically ill AND enjoy it .

I started having these problems at age 45, almost 14 years ago. For me it has only become worse and more difficult to deal with as I aged. Time itself seems to be a factor. I think it gets progressively worse but also the meds never stay the same for long. It is like shooting at a moving target. If you shoot where the target is, you will miss it, you have to shoot where the target will be and it depends on the target (the RLS sufferer) and the bullet (the medication). The target changes speed as it is moving, I'll say it speeds up because the patient is going faster towards the end-of-the-line, because the symptoms are getting worse, going downhill.

The bullet loses it potency as it travels through time towards the target. For awhile it would hit the target and it would be like at a country fair where you are hitting a target like a bell. As time goes on though the target speeds away and the bullet can't keep up and it misses, and the RLS comes back. You lose sleep, your mind plays tricks with you and by the time you get a chance to really think about it you haven't slept well for some time. You go back to the gunsmith and he gives you a better bullet that can hit the target and it happens over and over and it always seems fixed, but it changes once again.

I have reinvented myself in that I refuse to give up and I think about things like this. When I contemplate that half the world is wondering where their next meal is coming from and without even fresh water to drink my problems start to seem trivial by comparison. They are not trivial though but you know what I mean. I'm sitting here typing on my own laptop computer with high speed Internet on my cozy couch recliner. The temperature is exactly what I wish it to be and if it is not I can reach for my smartphone and tell the thermostat to make it whatever I want. I drive to my job and sit at my desk and do stuff on computers which is really kind of fun compared to having to do manual labor outside somewhere in winter. I could go on talking about all the ways I have been blessed for a very long time. Not to mention my first 45 years that was mostly awesome.

I have had a wonderful life. I had a good day today. I have been thinking about the thought that I can believe my life to be better and it will be better. I slept 6 hours last night and I'm going to bed right now at 10:30 pm. Suboxone today is a blessing, as always I hope it will continue, maybe this time it will work for years like Mirapex once did. Hope.

[ViewsAskew]

My journey started about 11 or 12 years ago - when I think about it, I've already been through so many phases with this. I've managed to keep finding ways to deal with it, get around side effects, and so on. The one thing I haven't done is admit that, for now, I can't be the person I was. My brain just doesn't work the same. A big part of my job is problem solving and being very sharp mentally. I am at times...but I'm not at times. And, I'm not at times when the client is counting on me to be. I lose credibility and feel so incompetent.

I want to give up - but in a different kind of way. I want to give up caring about how people see me. I want to give up my identity as someone who's smart and people turn to in order to fix things. I want to get my satisfaction in a different way. I want not to care when my brain hiccups and I can't remember something I could before or when I make a mistake that I wouldn't have made. I want to accept the new me. It's not that new! It's time.

For years, I've toyed with Buddhism and meditation. I see clearly that it's not been in my heart that I have accepted many of its premises. It's only been intellectually. I can only hope that the next step is to accept it in my heart. By giving up, I hope to reclaim myself and be even happier, if that makes sense. I won't, however, give up that there is a place for me in this world or that I can't find a way to be productive, happy, healthy, and enjoy my life.

[EeFall]

When I was a teenager, my mother came up to my room and asked me what was wrong. I told her I had just realized that I couldn't do everything. I broke down sobbing (not something I had ever done as a macho teenage guy). She told me that it was just part of growing up, to know yourself. Even now, over 40 years later, I tend to believe that I can do anything (which is absurd) and now I have a sore shoulder to prove my foolishness. I went outside last week and weeded a large section of the garden which should have taken probably 4 hours, and I did it in about 45 minutes.

My wife came home and I told her what I had done, took her out and showed her. Instead of being happy about it she said, "What about your shoulder?" "Shoulder, what about it?" I said. She then reminded me that I had just gotten a cortisone shot the week before in my shoulder because it is bone rubbing on bone. I had totally put it out of my mind. I can't keep doing that. I'm not just talking about physical labor but brain power too.

I think we just need to understand our limitations, it is reasonable that we have limitations with severe WED. It doesn't mean we can't be productive, happy, healthy, and enjoy life, it just means we need to remember that we are human. If we were Superman then we wouldn't be real and we wouldn't have RLS