No doubt about THAT.

Finding ways to adapt and cope, I think will vary from person to person.

You want to make sure Billye that you are getting enough folic acid
to compensate for the methotrexate. If you happen to be one of the
part of the population that does not activate/methylate folic acid properly,
you won't see its benefits.

In that case you need folinic acid...available by Source Naturals, or RX version from your doctor..Leucovorin.
Metanx RX is the only version of methylfolate you can get now. Merck stopped selling it OTC. You might ask your doctor for it, if you have insurance.
Metanx has methylB12, methylfolate and P-5-p-- activated pyridoxine.
B6 is essential for making serotonin..the antidepression neurotransmitter.

Sometimes we make assumptions that something is working, when it is not.
There are 25 genetic errors in folate chemistry, and I expect they will find more. So if one folic acid doesn't work, I think you should give another a try.
Low folate causes depression, with that increased pain levels.

I am so sorry you are feeling so down. Down I understand personally, and I have been on my visor now for two weeks as a matter of fact.
I hope your increased pain levels don't last much longer.

I am sorry Billye. I wish I could think of something else to suggest....


Cathie

Billye, I really appreciate how much pain you have been going through and I think you are a wonderfully brave and courageous person. Here you are, helping people out on this forum so much, even while you are having problems with terrible pain components. You have helped me out so much. We all get down in the pits at times and sometimes we need to rest there for awhile to recharge our emotional batteries. Just cling to the fact that you mean so much to so many. Hope you feel better and stronger soon.

Billye:

Like me, you probably can't get in and out of a tub, right?? Can you get some hot towels soaked in epsom salts and wrap them around your joints.

I'm doing this today because the weather is so bad by us, I'm walking crooked. My body loves it when it's hot outside but is no good to me whatsoever when the humidity goes above 80. Right now, my sciatica is flaring up. You'd think I would go in the whirlpool and I would, but I can't GET to the whirlpool.

Why couldn't it be closer than 20 blocks??

Oh well, at least my landlord, hopefully, will turn on the heat soon. It's October 27, and they haven't turned on the heat yet.

One day a few years ago, it was 37 degrees, and I yelled out of my window. Turn on the heat please", and the landlord looked at me like I was crazy and said "you are cold??" and I said 'it's 37 degrees outside, for god's sake" and he said "you think that's cold"??? I just looked at him. He's 80, smokes like a chimney, has one leg, and is healthy as a horse.

Good Lord!!!!

Melody

Got up during the night and went to the bathroom. I sit my crutches too far from me and in my sleepy stupor had to make a step and did it on the side that has been so sore. I immediately felt and HEARD a popping sound. Couldn't put my weight on it wihout really severe pain. This morning after calling my doctor and finding out he wasn't in. I asked if the PA could see me and the front desk told me that they could but they had no one to read xrays today. So I made an appt for Monday. Then about 10 min. later I received a phone call from the PA and she told me not to wait until Monday, to go to the emergency center immediately. So after spending almost 8 hours in the emergency room, it's official. The sacrum fractures still aren't healed and I now have a new one close to the pubic bone. The new one is why I can't put weight on that foot.



Billye

Oh my dear Billye:

You are not having an easy time right now, are you.

Do you have one of those handicap potty things near your bed? Perhaps that might make it easier for those "night-time tinkles"??

Not much more I can say except to send you a hug.

It's heartfelt, please believe that.

Mel

--you just can't catch a break from breaks, can you?

Other than the absurd aspects to all this, it's got to be getting really tedious . . .are there any more proactive medicational steps (or therapeutic steps) that can be tried? One should not have to worry about fracturing bones while going to the bathroom . . .

I hope you get some pain relief, at least, fairly quickly . . .

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.