What a total bummer.... so today I started looking around about methotrexate...and found this paper that supports using folinic acid instead of
folic acid to supplement ---

Methotrexate affects bone growth:
Folinic acid is Leucovorin RX

And also I just found this: That caffeine consumption may interfere with methotrexate therapy:
http://www3.interscience.wiley.com/c...8902/HTMLSTART
I don't know how much you consume, but raising methotrexate because of non-response could be due to this.

The cost of folinic acid is no longer high...
and also dosing should not be really high with this either since it is more effective than folic.
http://www.iherb.com/Search.aspx?c=1&kw=folinic+acid 800mcg
Rx leucovorin comes in 5 and 10mg

I've read the articles and I am printing them off for my rheumatologist. Also I've ordered the folinic acid. I actually ordered it last night but got the wrong one. Thanks for looking for the correct one for me. This is all going to be completely greek to my rheumatologist, but I am going to hope he can be educated. I only take one tablet of the prescription folic acid right now. Do you have any idea how much of the folinic acid from Source Natural I should take? I believe it's 800 mcg.

I'm not a caffiene consumer except for one cup of tea in the morning. I'm immediately switching to caffience-free based on your research. I don't claim to totally understand what you've found for me to read, but I do get the main meaning of it.

It's a real bummer to have this all happen. I don't know which will be worse tho, stopping the methotrexate and having multiple joints inflammed or breaking one every few weeks to say nothing of the crippling that happens from the joints deforming. So I'm really between the proverbial rock and hard place.

Glenn,
I'm looking at Forteo. The prescription Liza Jane has been taking instead of Fosamax. But her recent bout of increased neuropathy has us waiting out her trial situation of waiting to challenge with Forteo again. Other than that, I'm not sure there is anything to be gained medicational wise. But of course I'm open to education in the subject.

Thanks all of you, you are such treasures.
Billye

at 800mcg a day (this is one tablet)...

I saw some papers that said HIGH dose undoes methotrexate effects...
but lower dose does not. So I would not go above 2mg (3 tabs) in any case.
Oral Rx folinic starts at 5mg not 1mg like folic does. So high dose in papers
would have to be at least 5-10mg.

I was surprised about the caffeine. I wonder how many people get raised
methotrexate doses because of it not working as they slurp down their coffee all day long? I didn't know this effect, and I would wager the docs don't either.
Many doctors don't even give folic acid to methotrexate patients.

If I find anything else, I'll put it on this thread. My son is visiting today, and I
have less time than usual today. But I am working on that B6 thread, so something may pop up while I'm doing that.

I posted a link (on the Sjogren's forum )to your post about the folinic acid Mrs. D and got this in answer :

" Re: Well Official!!
« Reply #10 on: Today at 11:27:58 AM »

--------------------------------------------------------------------------------

Folic acid and folinic acid are NOT the same thing, and each has different uses when added to methotrexate. Folic acid is a protective agent, sparing the liver from the toxic effect of MTX, while folinic acid is considered a "rescue" agent reversing the effects of MTX. The research into the osteoblastic and trabecular bone cell proliferation is valuable, but refers to the recovery of bone marrow function after the use of MTX.
This requires very specific discussion with your doctor, and probably a bone marrow biopsy, to determine if the cause of the osteoporosis is indeed bone marrow failure. If that isn't the case, using folinic acid while taking MTX could inhibit the therapeutic effect of the drug.

Billye, I am so sorry for yet another dose of bad news; but I hope that this spurs the effort to determine WHY you have this much problem with fractures"

So now I have no clue what to do.

Billye

studies showing low dose does not affect the methotrexate. High dose can.

When leucovorin is used orally, RX, the minimal dose begins at 5mg.
The OTC one starts at 800mcg (which is less than 1mg).

And remember...if you have a MTHR polymorphism...and cannot convert folic acid
it won't work at all. There are 25 different genetic errors so far discovered. And this
is separate from the methotrexate data.

Billye, I think that Melody's suggestion of getting a bedside commode is a good one. Alos, you should probably go to using a walker instead of crutches, as it is more stable. PREVENTION is a better approach than trying to recover afterwards...

ideas, but, I am drawing a blank.

My own osteo issues resulted from a combo of the anti-seizure meds [calcium depleters supreme] and going off HRT onto Estrogen Blockers to keep cancers at bay. I'm trying to chomp down as much calcium, Vit-D, and Mag as I can and can tolerate w/o new more exiciting side effects...

All I can say is the chocolate flavor calcium chews do really have a good choc flavor?

BTW? I actually followed up on your suggestion to use Biotene? And, while I went into immediate slobber mode the first few times [imagine blood-hound or Saint Bernard?] It's really eliminated tooth decay in the last 3 months! The last time I'd seen the dentist.. I was going 3-5 cavities a quarter prior to that! Who would have thunk? THANK YOU, THANK YOU! THANK YOU! - j