Retitled: Phase II, let it begin.

[ViewsAskew]

the Johns Hopkin's research, iron sucrose (saccharate, saccharum) was not supposed to be as effective as the low molecular weight iron. Maybe I am remembering incorrectly!

No, you're remembering correctly. Interesting, isn't it? But they didn't compare with iron dextran or with controls.

Good point about them not comparing it to iron dextran (particularly the low molecular weight version). That would seem to be the next trial. Iron sucrose has been primarily used in Europe and is relatively new to the US. Unsure if it's used in Canada. There are also a few new types of IV iron. Wonder if the JH folks have tried all of them?

Seems that, from what I read, one of the benefits of using LMW iron dextran, was that you could infuse 1000 mg (full dose) at a time. You apparently cannot do that with all IV iron types. Doing it in one dose saves a LOT of money. But, if it increases the outcome....then it seems it would be worth it.

[badnights]

I think that was one of the main benefits - being able to increase the dose with little (or no) risk of toxic shock. With the HMW sugars, patients sometimes went into shock. Not sure the parameters of those trials as compared to this recent one, though.

[ViewsAskew]

I emailed Dr B. He said he was aware of the study and had talked to Dr Allen about it. He said is wasn't clear why the sucrose worked in the Asian population and didn't in the US studies.

He suggested that the issue for me may just be that I'm not getting enough iron into the brain. Which we had already hypothesized here. With an infusion, you have no idea how much gets through. If they can increase that, we likely all would get the infusions with great success!

Until he sees my latest bloodwork, he's not saying what next steps are.

[EeFall]

It seems the question should be why is the iron not able to make it to the brain? It sounds like the transportation system is broken. It would be like having huge deliverers of iron by boxcar to the smelting plant but it just sits there on the tracks with the conveyor belts broken down and it can't make it to where it should be processed. The conveyor system is probably some other chemical process altogether, it is frustrating to think about it. If you think about it say that a normal smelter plant has 10 conveyors but the broken down plant called WED has only a couple working. If you bring in 10 times more iron why would it even help? You still have 8 conveyors broken down.

[ViewsAskew]

Yeah, that blood brain barrier is a great thing in some ways, but it really causes problems for us in this situation!

A few months ago I posted about a procedure that allowed stuff to get through the blood brain barrier. I honestly think that may be an excellent way to test the iron hypothesis. It may be extremely expensive, though.

[ViewsAskew]

I received my lab tests today. I took the test during the period when I still had a little benefit from the infusion- it was 4 weeks after the infusion, and two weeks after I'd seen results. My ferritin was 220.

That's not all that high given it was 4 weeks after getting 1000 mg (or whatever unit is is) of iron!

Wonder what it is now?

I've been thinking of trying pramipexole for a week or so to see if I augment as I used to. My ferritin has never been higher than 35 when I've taken it. It would be nice if that alone worked. I do NOT love the side effects, but I'd like to withdraw from methadone at least temporarily and then alternate, but for longer periods - maybe a couple weeks on pramipexole and then a week on methadone. I dislike both dependence and tolerance!!!!

[Polar Bear]

I'm looking at 220 and thinking that's great. How much higher would you expect following infusions.

[ViewsAskew]

I'm looking at 220 and thinking that's great. How much higher would you expect following infusions.

Well, I'm guessing it was higher than that in the prior two weeks when I had the 40% reduction in meds.

The real issue - as Dr B said in an email to me - is that it's not always the ferritin level - it's how much is getting into the brain. Could be that another infusion won't get more into the brain. Could be that one more would do it. No way of knowing.

[Polar Bear]

Wouldn't it be wonderful if weekly/fortnightly records of levels were possible.

[ViewsAskew]

Wouldn't it be wonderful if weekly/fortnightly records of levels were possible.

Without spending $100 each time!

[Polar Bear]

Yikes !! $100 for blood tests?

[ViewsAskew]

Yikes !! $100 for blood tests?

Indeed. Fortunately I have insurance and the doc has been coding them as anemia, so the insurance had covered it.

[ViewsAskew]

I see Dr B in about 6 or 7 weeks. Not sure what he'll want to do.

I've been much more bold about using a dopamine agonist more frequently, though. Since my ferritin bottomed out in the 70s with the first infusion, I'm hoping it's about the 100 mark with the second one (It was 220 or so 4 weeks after). If it is, there is a possibility that I might not augment in a week or so. If I could take pramipexole, say, 4 or 5 days a week, then methadone on the weekends, that would be awesome. But, first things first.

For now, I'm taking 50/50 pramipexole and methadone 3 days at at time, then one night of 100% methadone. This seems to be working. I think next week I'll try 2 or 3 days at 75/25. I'm trying to see what my body does if I limit the methadone; I have no idea if I may have withdrawals or not. Once I try the 75/25, I'll likely try 100% pramipexole for a few days.

I still get side effects from the pramipexole that I do NOT like - but I'm dealing with them better than before. I am not having as much of an issue with depression - am hoping that is related to the increased D or that my hormones are in a different place (perimenopause is definitely here). It could be that I'm not doing a complete switch, too, and that I'm keeping some methadone in my system (which may be evidence that I will go through withdrawal when stopping the methadone).

[EeFall]

I hope Dr B can help! All these meds for WED seem to have some side effects like grogginess, depression, constipation, or whatever. Then taking them together it is difficult to know what they are doing. On the other hand WED sufferers don't have much of a choice but to try and find what will work with the least problems. It would be nice to be able to zip into the future where they would be able to analyze the whole of a person and say you need to take this and this and it would be optimal. I read too much science fiction

[ViewsAskew]

I hope Dr B can help! All these meds for WED seem to have some side effects like grogginess, depression, constipation, or whatever. Then taking them together it is difficult to know what they are doing. On the other hand WED sufferers don't have much of a choice but to try and find what will work with the least problems. It would be nice to be able to zip into the future where they would be able to analyze the whole of a person and say you need to take this and this and it would be optimal. I read too much science fiction

That WOULD be nice! I wish we were there now.