I'm finally getting an infusion

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
badnights
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I'm finally getting an infusion

Post by badnights »

I have been meaning to post about this for days now, but my days are full, either with visiting places and people (mainly Ann aka viewsaskew!) or with trying to sleep.

I have been taking oral iron for years. I have noticed if I stop, my symptoms worsen after a month to 5 weeks. When I start again, there is an equal lag (4 or 5 weeks) before the symptoms subside again. So I figure there's a good chance IV iron will be effective for me.

The specialist in Edmonton that I see every few years, however, is not willing to recommend infusions when my ferritin is over 40 (maybe if it was under 100, I could convince him, but not with it up around 200). I contacted Johns Hopkins but was not going to be able to see Earley. And if I wanted to ask questions of the doctor they had assigned me (such as, will you prescribe infusions if my ferritin is 200) I would have to pay a thousand-dollar fee for a "remote medical opinion". So in despair one night at 10 PM I emailed Dr Buchfuhrer in southern California. By 11 PM he had replied, and the next day when I called his office, they were expecting my call. I got an appointment to see him Sep 3.

It was a long trip to get here, but family and friends have made it easier for me. Buchfuhrer's office had to re-book me for the 4th, which was apparently a very unusual event, but what a great consultation on the 4th! I have 4 options to change my treatment, one of which is IV iron and all of which can be done in combination. The others are:
to increase the Lyrica (scary cuz gabapentin made me severely depressed and thinking suicidally);
to add a bit of Neupro (scary because I augmented in days on ropinirole - but, my ferritin is higher now so it might be ok); and
to switch from hydromorph contin to Belbuca (buprenorphine film) (but he wants me to lower my current hydromorphone dose by one of the other methods first).

I wanted to try the iron. I have no insurance in the US, but Dr B's office tried to find the cheapest option for me - considering both the cost of the iron infusion itself (cheaper if I could get InFed (the iron dextran) and cheaper if I can get it done by a pharmacy nurse who comes to your home, as opposed to being referred to a hematologist, which involves a second consultation, the possibility that the hematologist refuses, and the added cost of staying here longer because of the time it would take to get in with a hematologist then to wait for the actual infusion.

Yesterday morning I was told that they had found an infusion pharmacy that would accept cash patients but would only use Injectafer (the iron carboxymaltose), probably because they were still gun-shy of iron dextran from back when suppliers provided a high-molecular-weight version of the substance, which caused toxic shock in a lot of people who took it, instead of low-molecular-weight iron dextran, which is very safe and is the only type now supplied. The Injectafer would cost 1500 instead of something like 500.

Yesterday afternoon I got a call from the infusion pharmacy, very apologetic, but about a month ago - unbeknownst to Dr B's office - they had to change their billing practices to charge uninsured patients the same as insured ones. So the cost is going to be $3000. OUCH. Especially because I might have to be back in a few months - if it takes, I don't know how long it will last! 1500 was a heavy enough hit, 3000 is evil!

But this is the thing: my life is only a fifth of a life. I hvae very little energy. I have money saved for retirement, but what's the use if I die before I get there? What's the use, if I get Alzheimer's like my mom, and can't do anything with my money? What's the use of retirement money if I'm not going be alive or have all my faculties? So I decided to spend now and worry about retirement later.

Tonight I will get visited at my little b&b by a nurse who will give me 750 mg of Injectafer. The place is a tiny 3-room bungalow in Long Beach with no real privacy - I'm in one bedroom, the other one is occupied by another paying guest, and the owner is sleeping on the couch in a very small living room! We can hear each other breathe. Both of them will probably be home. Lol. But we get along well so it might be a teaching opportunity about WED/RLS.

I was surprised to hear Dr B say I am on a high dose of hydromorphone. (9-10 mg). I was up at 18 -21 before I changed my diet. I also saw that Ann wasn't having daytime symptoms as much as I was (just in the few times we've been together). I've started to wonder just how bad is my WED/RLS - I like to think that it;s not bad because it;s gotten so much better. But those two things now make me wonder.
But I don't really want to dwell on that.

So that's where I'm at! Since I had to come here anyway, I decided to make a trip of it. I'm staying in Long Beach to be near Ann (and it's a pretty cool area). I spent two days at a racetrack in the desert learning to ride a sportbike (what an awesome rush). I have a number of other things I want to do here, but first - now that I know when my infusion is going to be - I need to arrange a flight home!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
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Re: I'm finally getting an infusion

Post by stjohnh »

Yay Beth!!!

My Injectafer bill was $2250 EACH for the two infusions. Happily I only had to pay $137 out of pocket (hallelujah).
Blessings,
Holland

ViewsAskew
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Re: I'm finally getting an infusion

Post by ViewsAskew »

It has been so nice having you near me! Loved the times we were able to see each other. And while the price is truly evil, I am so glad this is happening for you. Whatever happens, I think if we can afford to try these things (emotionally, physically, and financially), it is important to do so. If nothing else, you get closure. And, hopefully, much more.

Per the daytime RLS and yours vs mine:
1. As the years go by, the 24/7 has moved to 18/7, then to about 12/7. It definitely is not as bad for me as it once was.
2. I take my meds earlier than you do - 2-3 hours, I think (between 4 and 5 PM). Could be timing would change things. I think - but am not sure - that the two times we saw each other and you had symptoms that I had already taken my daily methadone and you had not.
3. I used to spread the opioid out. But, I had a lot of breakthrough at night. The benefit was to avoid the headache-y brain-pressure feel of withdrawal during the day, but ultimately I didn't have enough in my system at night and I was always up until 3 or 4 AM. By taking them earlier and at once, I stopped the breakthrough and started going to bed much earlier (almost always in bed by midnight to 1 AM these days). The penalty is that I feel like crap most days.
4. The half like of methadone? It truly keeps symptoms away during the day. When I have to reduce it or the couple times I have stopped it? Then the RLS starts around noon.

Looking forward to seeing you again.
Ann - Take what you need, leave the rest

Managing Your RLS

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ViewsAskew
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Re: I'm finally getting an infusion

Post by ViewsAskew »

stjohnh wrote:Yay Beth!!!

My Injectafer bill was $2250 EACH for the two infusions. Happily I only had to pay $137 out of pocket (hallelujah).
I cannot imagine why hers is so darn high. Yours was just a few months ago. If it works, it is worth it...but still an incredible cost and so out of reach for many on this discussion board.
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.

badnights
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Re: I'm finally getting an infusion

Post by badnights »

I was originally going to ask if I could get a second infusion a week later, as per the usual protocol, but not at 3000 a pop :( and also I have a bigger concern now.

I had to go to the lab that did my blood work last week, physically go there and wait at the counter for 30 minutes, to get them to re-fax the results cuz Dr B's office still hadn't received them this morning. I got a copy too. My iron is 143 micrograms/dL. TIBC 351, %sat 41, and ferritin an unbelievable 271.

I don't know what these numbers mean - I've been trying to find out what the 143 H iron means, in particular, since they flagged it high abnormal. Dr B's office emailed that they had received the results but didn't reply to my concerns about the high iron. I just recently forwarded it to Dr B's personal email, since the nurse is coming in under an hour.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: I'm finally getting an infusion

Post by ViewsAskew »

I found this:

The results can vary over time depending on a person's overall health. Defined normal levels tend to vary from one lab to another but typically fall within the following ranges:

TIBC: 262–474 mcg/dL
Total serum iron: 26–170 mcg/dL in women and 76–198 mcg/dL in men
Transferrin saturation: 204–360 mg/dL

https://www.medicalnewstoday.com/articles/322083.php
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.

badnights
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Re: I'm finally getting an infusion

Post by badnights »

Tonight I had a nurse practitioner arrive at the airB&B I'm staying at, set up the IV pole and prepare the bag, find a vein and get the IV going, while the lady whose house it is and another paying guest sat and chatted with me and the NP. It was one of the more bizarre experiences of my life.

The infusion went fine and there were no ill effects. It took about an hour or a bit less, plus 10 min or so of prep time beforehand and 10 or 15 of watching me afterward to make sure I would have no reaction.

I was encouraged to learn that the NP, Armin, has done this for WED/RLS patients before. It's so good to see that people in the health professions are starting to become knowledgeable about it. Armin has noticed that obese WED patients are less likely to benefit from infusions, which is something I hadn't heard before. Has anyone else heard of that anywhere?
Ann wrote:Per the daytime RLS and yours vs mine:
1. As the years go by, the 24/7 has moved to 18/7, then to about 12/7. It definitely is not as bad for me as it once was.
2. I take my meds earlier than you do - 2-3 hours, I think (between 4 and 5 PM). Could be timing would change things. I think - but am not sure - that the two times we saw each other and you had symptoms that I had already taken my daily methadone and you had not.
3. I used to spread the opioid out. But, I had a lot of breakthrough at night. The benefit was to avoid the headache-y brain-pressure feel of withdrawal during the day, but ultimately I didn't have enough in my system at night and I was always up until 3 or 4 AM. By taking them earlier and at once, I stopped the breakthrough and started going to bed much earlier (almost always in bed by midnight to 1 AM these days). The penalty is that I feel like crap most days.
4. The half like of methadone? It truly keeps symptoms away during the day. When I have to reduce it or the couple times I have stopped it? Then the RLS starts around noon.
Of course, that makes sense. I can't take mine any earlier because it won't get me thru the night if I do. Usually I just suffer thru whatever happens from 5 or 6 til my 830 dose kicks in at 930 or 10 - actually, usually I'm at the gym 630-730, which is right when I was being bouncy in your kitchen. Dr B said the hydromorph contin should last 12 hours but it simply doesn't with me. He acknowledged that I might be a fast metabolizer (sucks to be me). But I think he thought it should last longer anyway - - -I think I missed something there.

I don't take my entire daily dose all at once because I want there still to be some in my system as morning approaches, otherwise symptoms will wake me up too early.

So my take-home from this discussion is that the hydromorph contin is maybe not the best med for me to control my symptoms. Something like methadone or buprenorphine with a longer half-life would probably be better, which is probably why he suggested the Belbuca.

I don't know why the lab flagged my iron as high abnormal. It falls within the normal range you gave. Dr B got back to me just before the infusion and said it was not high enough to worry, although the infusion might not do as much good as if my iron had been lower.
Beth - Wishing you a restful sleep tonight
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Polar Bear
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Re: I'm finally getting an infusion

Post by Polar Bear »

Beth.... I really do believe you did the right thing going ahead with your (very expensive) iron transfusion. To not have done so would have left you forever wondering....what if?

I'm with you on the logic - about preparing for the possible distant future when its at the cost of our present wellbeing.
I'm so glad you've tried this infusion. It does sound as though everyone involved is doing their best to have it processed as best they can. Such a bummer about the cost but it just might be the best you've ever spent.

And if not, you will have done it, tried it, and will have new knowledge for your pathway forward.

I am so wishing that this will work, and yes I know you will need another transfusion, you deserve this to work.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: I'm finally getting an infusion

Post by Rustsmith »

Beth, I am glad that you were able to get the infusion even though it cost a fortune. And the fact that you got the visit with Ann and had the super bike experience makes the trip even better. I have mixed feelings about what to think about whether the infusion helps you. On the one hand, I would really love to see you benefit and be able to reduce your meds. But I also can't help but think about what your choices will be like once the benefits infusion wears off. Travel to LA on a regular basis to get a treatment that costs that much doesn't sound very attractive.

But you also have the recommendation to try Belbuca. I have heard of a number of people that it has helped, so I hope that you will be able to try it once you get home.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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badnights
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Re: I'm finally getting an infusion

Post by badnights »

Thanks, guys. My thoughts on the expense are that hopefully my doctors in Canada will see the benefit, see that Dr B will confidently prescribe the iron, and this will cause them to decide to prescribe it themselves. If they do, I have at least a chance that my insurance will pay a portion of it. That's what I'm hoping for in the longer term.

But if I do have to travel to So Cal a couple more times, I could be much more cost-efficient, since I would know how long it would take. I might even be able to get the cheaper iron if I saw a hematologist instead - - but then I would be back to not knowing how long it would all take.

I'm sure it will all work out somehow.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
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Re: I'm finally getting an infusion

Post by stjohnh »

    badnights wrote:Thanks, guys. My thoughts on the expense are that hopefully my doctors in Canada will see the benefit, see that Dr B will confidently prescribe the iron, and this will cause them to decide to prescribe it themselves. If they do, I have at least a chance that my insurance will pay a portion of it. That's what I'm hoping for in the longer term.

    But if I do have to travel to So Cal a couple more times, I could be much more cost-efficient, since I would know how long it would take. I might even be able to get the cheaper iron if I saw a hematologist instead - - but then I would be back to not knowing how long it would all take.

    I'm sure it will all work out somehow.
    Beth,
    If it comes to making a trip to US every year or two, some time spent on the phone could help narrow down some less expensive options. One possibility would be to see my hematologist in Mountain View (near Stanford and Palo Alto). Dr B also is on the staff of Stanford, and sees patients occasionally in Redwood City (a little north of Stanford). He could refer you to my hematologist and presumably get the Injectafer ordered. I suppose the first hematologist visit would be around $500, and the Injectafer is known (currently $2250 per infusion). Subsequent years would be a little less since the hematologist would charge only for a followup visit rather than a full consult that he would charge for the initial visit. It took about a week for me to get my infusion from the time I saw the hematologist, but with some telephone prep work that could likely be less.
    Blessings,
    Holland

    ViewsAskew
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    Re: I'm finally getting an infusion

    Post by ViewsAskew »

    I was thinking something similar to Holland. Once I have a relationship with the hematologist here, I am sure he will come around completely. He almost is there...and unless something odd happens, it will benefit me and he will definitely be on board.

    I also did a bit of research and found other pharmacies. I bet a few phone calls would find one and could be that they DO have an uninsured price. Of course, they might not!

    When we had lunch today, you left and were smiling - and then you said something about being happy. I think having it done was part of that. Whether it works or not, you seem to feel better (from my perspective) and that is a good thing. Of course, our very fascinating tai chi instructor might have willed you happier, lol.
    Ann - Take what you need, leave the rest

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    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.

    badnights
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    Re: I'm finally getting an infusion

    Post by badnights »

    Our tai chi instructor could hear the ants walking, even despite all of those traffic noises, so I'm sure whatever she wills, she gets :). I did enjoy the tai chi immensely; for some reason I find it more calming than yoga. Sometimes I do some when mild symptoms wake me at night - it's meditative, peaceful, but movement.

    But yes - - the reason for this trip was fulfilled, the first part of the gamble I took has paid off, I have gotten the infusion. That has made me more relaxed and happy.

    Holland & Ann, I think you're right about my next visit. I will get Dr B to refer me to a hematologist, and if he can pick and choose, I'll ask for either Holland's or Ann's. I might have to deal with living expenses for the first such visit, while I wait for an infusion appointment after the consult, but once I've established a relationship, subsequent visits could hopefully be arranged to have the infusion right after.

    It sounds like there will be good options. As long as I have this community of people to help me think things out, I'll do ok :)
    Beth - Wishing you a restful sleep tonight
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    ViewsAskew
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    Re: I'm finally getting an infusion

    Post by ViewsAskew »

    I also find tai chi more meditative and calming than yoga. I do like yoga, but it is definitely very different. And while I will never complain about yoga 2 blocks from my house every day and free (though they do appreciate donations), I would love tai chi at least two of those days! Angie, our instructor, does teach here in Long Beach on Thursdays, but that is the day and time of my favorite yoga instructor.

    Whatever happens per your infusions - it will work out somehow.
    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.

    stjohnh
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    Re: I'm finally getting an infusion

    Post by stjohnh »

    Beth, having your blood tests done before coming to the US would speed things along. Additionally you could send the test results to the hematologist before you came to be sure the hematologist wouldn't balk at whatever the test results showed. I believe most hematologists don't keep Injectafer, and possibly other IV iron preparations, in stock. They order the med from a pharmacy, and may take up to several days for the doc to receive it, so all that must be accounted for when planning. Obviously you would like the hematologist to order the vials of iron before your visit.
    Blessings,
    Holland

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