HR, Jim, Anyone? - Deplin

[alagirl]

My psychiatrist had these samples in her office left by (obviously) an overeager sales rep, because the medication is apparently not psychiatric in nature.

HOWEVER, it is supposed to help in the formation of red blood cells, and it comes in a pill.  Its called Deplin.  Has anyone heard of it?  

She gave me some to try but I can't see how it would help me because I think its based on folates somehow and neither of the anemias I have are related to a defecit in folates...  But I don't really know about this drug, it would be great if it COULD help.

HR, do you know anything about it?

Syd

[jmjm530]

Just saw your post about Dr. G. in another thread and I responder here:
http://www.medhelp.org/posts/show/423204

In brief, if travel is required, I think you'd be better served with either of the two doctors I mentioned and preferably a double-shot, but I really wouldn't delay much longer as I thought you would have gotten feedback already.

-- Jim

[jmjm530]

A quick google suggests it's indicated for tx depression when hgb is on the low side. Seems harmless, but why don't you run it by your treatment doctor -- better yet, since you appear to be consulting with the CA doctor, why don't send him an email with a link to it's web page. Speaking of which, have you had your consult yet and if so, what did he say.  FWIW, anecdotally, I hear Deplin also  supresses the giggle response during sex.

-- Jim

[alagirl]

When I first went to my hematologist it was my second week of treatment and I needed a huge increase in my epogen.  I was tired and pissed at the world, and it was a hematology oncology center.  And I should be smacked for what I did.  The damn form was, I kid you not, like six or eight pages long.  I hadn't thought about it til now, but duh, prob because it was an oncology center too.

I filled out the first page, went back to the counter and slapped them down and said I'm not filling these out.  I just need to see the doctor, because I just need a prescription from the man and I already know what it is.  

She was kind enough to take the papers and make a chart for me, and to do all of this without shooting me.  And then the hematologist was SO sweet, and I felt really bad.  I apologized to her for my apalling behavior and told her that I just hadn't been feeling well, but that this was no excuse.

If my hgb would stay in the 8's I would just stay home and in bed, because the iron buildup is so high now. The problem I have had on treatment is that my hgb just constantly declines.  I can't make red blood cells as fast as the drug induced hemolysis occurs. I know that once I hit the mid-eights I have two or three days before I'm in the low 7's or high 6's.  So once I hit this point I start getting everything together to go get tanked up.  And it can also fall rapidly too, so I can't monkey around with it.  

On my second transfusion I checked into emergency at a 7.3 hemaglobin, they gave me one unit of blood, and my hgb fell to 6.3 while they were waiting for the next unit.   Imagine if I hadn't gone in when I did.  So I just have to be careful.  Now, the positive part of this is that since I have had that other type of anemia, anemia of blood production, for so many years, I can tell when I am getting bad in terms of being pretty critically low, so I take care not to let it get that bad. And my hematologist does not want me going much lower than eight, so I have an agreement with him that he lets me keep treating if I follow through on my promise to regulate my cbc's on my own and check in with him for transfusions at the levels I've agreed to.  

Not being my gastro he couldnt really pull me from tx, but he could sure recommend it to my gastro or just stop treating me as my hematologist.

[nygirl7]

As sucky as it is being in the low 8s I'd go for another transfusion too.  There is just no way you can live with it that low.

Recently I got  a new doctor and I had to fill out the forms you get before they will see you. Well I was just about mortified with how MANY of the things I had to check off as having had on the list.  then I ran out of room on the medications you take space...I was like oh my God they are going to think I'm a hypochondriac or something here!

I figure the older you get the more time you've had to let your body fall apart.....so the list just grows and grows but man oh man - we shouldn't have the list of a 90 year old!

Good luck at the transfusion.  At least for a little while it should help you and maybe the procrit will kick in.

[alagirl]

Not so much worried about that, I mean, I'm more wondering if it would even work in my case.  I won't even approach my tx docs about it until I get more info.  No reason to even get involved with it if, as I suspect, it wouldn't work for me anyway.  So I guess I'm more trying to find out if anyone knows how this drug is supposed to work.  

As far as overall drugs go though, I take a LOT.  I was at the ER yesterday and they printed out my list for me so I can quit having to try to remember it all the time since I keep ending up either there or in the hospital and its hard to remember them all when my blood count is low because I don't think as well.  Anyway, I was embarrassed by how long it was.  I mean, about half of them are PRN's and two are weekly shots, but STILL....

My hgb is back down in the low 8's.  I just had to correct my spelling and grammar about five times in this post back to you.  agghh!  My brain does not work well on low oxygen.I am going back in for another transfusion in the morning probably, or maybe Sunday.

[nygirl7]

When in doubt on what it might do to contradict the treatment meds...don't take it.   That is my personal logic.  Nothing is worth the chance it might upset the delicate balance.