Tuesday, May 26, 2009

hello internet, please send advice

So I was all proud of my B6 that I got on sale. And then I went back to the part in my book where she says what to take exactly (yes, I am self-medicating. My RE didn't mention CM problems and I'm darned if I'm going to play phone tag for a week if I can fix this myself. ENOUGH DOCTORS ALREADY). It says I should take one 500mg slow-release capsule every day all cycle. I didn't get the slow-release, but, well, whatever. But, what I did get is FIFTY mg - not 500! Is it possible there's a typo in the book? What dosage were/are other people on? I don't suppose a 1/10 dosage will have any effect? Or, I could take 10 pills a day, spaced out over time (of course, then I'd need two more bottles for this cycle alone). Sigh.

Also, I am now (again) considering starting an IF support group at a local parish. I'd thought of it before but not really thought it through. I've returned to it. Right now, I also have a first draft written of a letter to a local pastor(s) just suggesting that they be aware of IF as an issue in their overall pastoral ministry, and offering to answer questions if that's helpful. And, noting that I'm thinking about proposing an IF support group, but as yet undecided, and would welcome their perspective. I feel as though, if I'm going to complain about ministry to the infertile, I need to put my money where my mouth is. If I can't even write one lousy letter, who am I to complain about what other people won't do? It's my condition, I ought to care.

And, also, though in many ways I deal with this whole thing worse than anybody I've encountered, my deeply flawed coping mechanisms do give me some advantages in going a little more public. I can deal with any number of pregnant bellies with only mild irritation, and nothing a stranger says would make me cry. Yelling is possible, of course, but I don't see anything wrong with that. So, internets, what do you think? I know Cara has done this. Anyone had success doing it within a church?

Other informations: tamoxifen actually isn't femara, as far as I know. This is tamoxifen:


And this is femara:


And this is clomid:


Clomid is actually VERY similar to tamoxifen, if you look (they're oriented differently, just spin them around in your head. Also, the C-H-H-H is written out for the clomid but indicated by just a line for the tamoxifen. It means the same thing. FIVE WHOLE SEMESTERS OF COLLEGE CHEMISTRY! LOOK WHAT I REMEMBER!). The only differences are that clomid has a chlorine as opposed to a two-carbon chain off that double bond - and that one has its chain off a different benzene ring than the other. That's actually kind of a big difference. (That other unconnected molecule next to the clomid is citrate, by the way. Yes, I looked that up.)

And, AYWH, I go to Tepeyac - probably a bit of a hike from you - but my RE was trained by H.ilgers and maybe yours was too? Also, I want to know ALL ABOUT your side effects. I'm going to have to email and pester you.

(I know I have other points to respond to. I am going to go through my last four sets of comments and send messages soon. I am a GOOD BLOGGER.)

18 comments:

  1. That slow release gave me migraines. Oh the horror of that headache! :) And all while I was enduring those headaches, I didn't see ANY MUCUS!

    If I don't make mucus with antibiotics 4xs a day, something is probably very wrong!

    I like the clomid picture. It looks "busy"! :) What do I know! NOTHING ABOUT CHEMISTRY! Blech! ;)

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  2. Clomid is pure EVIL.

    500?? That sounds like a lot. Huh.

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  3. 500 mg sounds WAAAAAAY high. And b6 isn't one of those vitamins you can pop in high doses with impunity. I think 100-200 mg is the upper limit to avoid neuropathies (that stop when you stop taking high dosages).

    Cool chemistry, Misfit! I always enjoy your perspective.

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  4. Oh goodness, please forgive me if this is posting three times. Wordpress and Blogger seem to be having a hard time communicating with eachother right now.

    I enjoy, though do not understand,your chemistry drawings, but I CAN tell you something about vitamin B6 and CM.

    I go to Tepeyac too, and I have what my doctor, I believe technically described as: "your mucus stinks." (not literal stink)

    He told me to take B6, Robitussin, mucinex and ampicillin (prescription). I asked, "one of these, or everything?" He replied, "Well, you're 31, no need to waste around, do them all."

    I was taking 100 mg timed release of B6, which my doctor said would be fine. It did not seem to be producing the fertile-all-day stuff that others have noted, so I recently bought 500 mg sustained release. I had to order it online -- I couldn't find it anywhere, including Vitamin Shoppe. (I did find 500 mg *not* sustained release, but that sounded like nausea waiting to happen.)
    One thing I've noticed with all this -- it only produces nice CM on days when I "ought" to have it -- not the whole cycle. (I don't do the cold meds on other days, but the B6 is supposed to help regardless).

    "Taking Charge of Your Fertility" has a good list of what to try at what doses. I was afraid to do it myself until I saw my doctor, but he basically gave me the same list she did, but hers has a bit more detail (because he was rushed). I think self-medicating for CM makes sense -- it's clear if you don't have enough and some of the helping aids are available easily.


    ps Thanks for your blog. I just recently started my own.

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  5. Hm, I used to take a B6 supplement, but can't remember the dose. I checked some of my old references to see if I could find it, but ... nothing. Sorry! :(

    Oh, I stand corrected on the Femara!

    And I did start an infertility ministry at my old church. The pastoral team was supportive. But I never ended up getting it going, partly because I was reluctant to 'out' myself to friends and family as an infertile, and partly because we ended up moving, anyway. I'm very interested to see what you'll do, though, if you go through with it. (Oh, Loribeth at http://theroadlesstravelledlb.blogspot.com/2009/05/decision.html just ended a 11-year stint as a facilitator for an IF support group, though I don't think it was church-based - in case you're interested.)

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  6. I am of no help, but I am impressed with your knowledge of chemistry!

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  7. AAH...I am going to have nightmares of Organic I & II!! Thanks alot! ;-)

    I am thinking about taking something for CM in my upcoming clomid cycle, but I was going to call the doctor and see what he recommends. I have heard some people take mucinex? I don't know the difference between that and B6... do you take either of the two the days you take the med or do you take it when you would normally expect CM?

    Also I totally hear you about putting your money where your mouth is as far as an IF support group. I have thought about how great it would be MANY times, but I don't know if I have the background/motivation/organization to actually start one myself and keep it going. Of course my optimistic mind thinks, what if I get pregnant after the first meeting?

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  8. It's not a typo. It's 500mg of B6 in time release form, but it should only be taken short term at that high of a dose. For me, as suggested by my doctor, it's two months. I'm toward the end of my first month. After I've finished the bottle, I move down to 100mg. I've only been able to find the 500mg online.

    It's nice to know I'm not alone: I'm self medicating, too. I read up on everything before I decide on making a move to a new vitamin.

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  9. CrMs does recommend the 500 mg sustained release. I found it at a natural food store or you can find it online. My DH, who is a pharmacist, couldn't even order it from his distributors.

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  10. I absolutely adore that you have nerdy chemistry diagrams and analysis in this post. I don't have any advice except to say that both Clomid and Femara seemed to exacerbate my endo and not get me PG, so I pretty much despise them. That is all. Carry on. :)

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  11. Thanks for your post... my life has been so crazy, I'm just now getting caught up on the blogs.

    I appreciate the info on B6, I think that I should be taking more. Also, I've been on clomid, femara and tamoxifen (at different times) and I've never understood the difference! (Embarassingly my undergrad was in Biology.) Apparently they serve the same function, but work differently in the body???

    I am working with Dr. L at Tepeyac - are you working with Dr. B?

    And lastly, keep me posted on the IF support group! I have spoken with the director of family life for the ADW and we are meeting next week to discuss this idea. I'd love to combine our efforts! Were you thinking of keeping it on the parish level? You can email me at jeremiahtwentynineleven@gmail.com if you'd like to chat. :)

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  12. That's where I go too! I knew it! I assume you go to Dr. L. I go to Dr. B, but he put me on Tamoxifen because he knew she likes to use it. And I know of two other bloggers in our little infertility blog circle who go there as well. Small world!

    Yes, it's a hike, but there aren't any pro-life ob/gyns in my area so I know a lot of women who make the trip.

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  13. Nope, 500mg is right, but only for short-term use.

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  14. Say, for those who note "only for short-term use," do you know why? I'm popping the 500 mg of B6 now ... wondering if I should be more sparing?

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  15. I don't know anything about this, but found this from Dr. Google about consequences of long term use of high dosages:

    "Vitamin B6 is usually safe, at intakes up to 200 mg per day in adults. However, vitamin B6 can cause neurological disorders, such as loss of sensation in legs and imbalance, when taken in high doses (200 mg or more per day) over a long period of time. Vitamin B6 toxicity can damage sensory nerves, leading to numbness in the hands and feet as well as difficulty walking. Symptoms of a pyridoxine overdose may include poor coordination, staggering, numbness, decreased sensation to touch, temperature, and vibration,; and tiredness for up to six months."

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  16. I just saw your comments, on my blog, about the crazy doc who sent me home saying it was in my head! We are in such a fight out there!

    CrMs does recommend the 500 mg sustained release - which is what I am taking now. I found it at a local health food store.

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  17. Hey you guys - I can't believe I just found this blog - right after I got back from Tepeyac - and got put on Tamoxifen. The Dr. I saw didn't say anything about B6. Yes it is a 2-hr ride for me and I can tell you that after this visit I won't be going back. The next step is Nebraska - maybe. DH is against it and I'm not all that crazy about the idea.

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  18. Hey I can't belive I just found this blog - right after I got back from Tepeyac and got put on Tamoxifen. Sounds like they could save us all the $200 for the visit and just mail us a prescription.

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