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pain is the pits...

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

Whoops here we go again.

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.

:cool::cool::cool::cool::cool::cool:

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.: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 ---

Quote:

Arthritis Rheum. 2004 Oct;50(10):3104-11.Click here to read Links

Comment in:
Arthritis Rheum. 2005 Apr;52(4):1338-9; author reply 1339-40.

The effect of folic acid and folinic acid supplements on purine metabolism in methotrexate-treated rheumatoid arthritis.
Morgan SL, Oster RA, Lee JY, Alarcón GS, Baggott JE.

University of Alabama at Birmingham, 35294-1270, USA. slmorgan@uab.edu

OBJECTIVE: To determine if folinic acid supplementation during methotrexate (MTX) therapy for rheumatoid arthritis (RA) reduces both urinary 5-aminoimidazole-4-carboxamide (AICA) and urinary adenosine excretion more than does folic acid supplementation. AICA and adenosine are markers for MTX interference with purine metabolism. METHODS: Forty patients with RA who received MTX for 6 weeks were randomized to receive either daily folic acid or folinic acid supplements during an additional week of MTX therapy. Colorimetric and radioimmunocompetition assays were used to measure 24-hour urinary AICA and adenosine excretion levels, respectively. RESULTS: At the end of 6 weeks, 24-hour urinary levels of AICA, but not adenosine, were elevated as compared with baseline levels (i.e., prior to MTX therapy). Folinic acid, but not folic acid, supplementation normalized urinary AICA levels during MTX therapy. Relatively high urinary levels of AICA were correlated with reduced disease activity. No similar correlations were seen with urinary adenosine levels. CONCLUSION: The blockade of purine nucleotide biosynthesis by MTX at the AICA ribonucleotide transformylase-catalyzed step may be related to the efficacy of MTX, and this blockade is effectively relieved by folinic acid, but not by folic acid, supplementation. Copyright 2004 American College of Rheumatology

PMID: 15476202 [PubMed - indexed for MEDLINE]

Methotrexate affects bone growth:

Quote:

J Cell Physiol. 2007 Sep 4; [Epub ahead of print]Click here to read Links
Folinic acid attenuates methotrexate chemotherapy-induced damages on bone growth mechanisms and pools of bone marrow stromal cells.
Xian CJ, Cool JC, Scherer MA, Fan C, Foster BK.

Department of Orthopaedic Surgery, Women's and Children's Hospital, Adelaide, South Australia.

Chemotherapy often induces bone growth defects in pediatric cancer patients; yet the underlying cellular mechanisms remain unclear and currently no preventative treatments are available. Using an acute chemotherapy model in young rats with the commonly used antimetabolite methotrexate (MTX), this study investigated damaging effects of five once-daily MTX injections and potential protective effects of supplementary treatment with antidote folinic acid (FA) on cellular activities in the tibial growth plate, metaphysis, and bone marrow. MTX suppressed proliferation and induced apoptosis of chondrocytes, and reduced collagen-II expression and growth plate thickness. It reduced production of primary spongiosa bone, volume of secondary spongiosa bone, and proliferation of metaphyseal osteoblasts, preosteoblasts and bone marrow stromal cells, with the cellular activities being most severely damaged on day 9 and returning to or towards near normal levels by day 14. On the other hand, proliferation of marrow pericytes was increased early after MTX treatment and during repair. FA supplementation significantly suppressed chondrocyte apoptosis, preserved chondrocyte proliferation and expression of collagen-II, and attenuated damaging effects on production of calcified cartilage and primary bone. The supplementation also significantly reduced MTX effects on proliferation of metaphyseal osteoblastic cells and of bone marrow stromal cells, and enhanced pericyte proliferation. These observations suggest that FA supplementation effectively attenuates MTX damage on cellular activities in producing calcified cartilage and primary trabecular bone and on pools of osteoblastic cells and marrow stromal cells, and that it enhances proliferation of mesenchymal progenitor cells during bone/bone marrow recovery. J. Cell. Physiol. (c) 2007 Wiley-Liss, Inc.

PMID: 17786974 [PubMed - as supplied by publisher]

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

Mrs. D...; Glenntaj

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

I would start the folinic

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. ;)