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

What would happen if I continued on the prescription folic acid and took one of the folinic tablets? Would it be harmful? I'm not willing to have to have a bone biopsy at this time.

Thanks for all of this research. I know you have a visitor.

Dakota, I tried using the walker when it first started, but I can't support myself enough for the walker yet. And I simply cannot abhore the idea of a bedside comode yet. It may get to that. But not while I can still get around. I'm being very careful where I put my crutches now. But if it hadn't been this it would have been something else with the bones like they are.

Dahlek, I'm glad the Biotene is helping you. I've been using it for about 3 years and in all that time even with Sjogren's,.....no cavities and good checkups. I completely coat my teeth front and back when I'm getting ready for bed. And yes, the pillow has to be changed and washed regularly but I've still got my teeth. It doesn't happen often thank goodness. I usually use the mouthrinse first then the gel. I'm using 1600 mg of calcium and Mrs. D's fizzy magnesium every day. It helps things in the GI tract also.

Thanks all of you. You are wonderful.
Billye

Billye:

What is the deal on a bone biopsy? Are you supposed to get one?

I am going to the Mineral Metabolism Dept. at the school. My friend just went through this department and they ran all kinds of tests on her for osteo and bone loss, and I don't remember her saying she would have to have one... I know they are treating her with something for this, but I can't remember what. I just remember her Rheumy took her off of Forteo, because it caused bone inflammation.

And what is MrsD's fizzy magnesium, if you don't mind me asking?

Have you thought about getting one of those little carts from Sam's that you can push/and or sit down on? They are just wonderful and not at all like the old silver walkers. You can start out pushing and sit down on its seat, if you get weak or tired. I believe they were $99 by the pharmacy. They are very colorful and cute and have a basket to put things in when you shop or a place under the seat.

Cathie

Cathie,
One of the things the hematologist mentioned was a bone biopsy when he was listing tests we could do to find the cause of the anemia. But I haven't seen him since getting out of the hospital. I will see him on the 31st. But I'm not even thinking about it until we see what the new lab readings are on the hemoglobin and the inflammation. I'm not looking to do one at all. They hurt!

http://www.iherb.com/Search.aspx?c=1...Fizz+Magnesium

I read about it in a post Mrs. D did. I was having storage problems with the Slo-Mag. It would change and seem to sweat so I started using the Ionic Fizz Magnesium.

I've got one of those little carts with the seat, but you have to be able to support your body and I can't right now because of the pain. It's bright blue with hand brakes and a black seat. But you can't sit down and push. You have to be able to support your body. My support is broken right now. The bone that is fractured this time is right at the groin level or so it feels. It's crutches under the arm pits and transfering one leg and the crutch at a time hanging on the crutch. Very awkward and slow. But it's that or a wheel chair and I can't navigate a wheel chair very well in the house.

I'm just a mess.

Billye

Sorry, havent been diligent about reading site this weekend - so sorry to hear that you fell and more breaks.... that is really tough - if I'm understanding you need the weight under your arms to keep weight off your leg? This may sound silly - but would crutches with "feet" help? (I know single canes have them) - that may give you a bit more support for balance?

Be careful in any case - get help when you need to get up - and feel better

Billye:

Let me tell you how "handy" a beside commode can be, even for people who arent' disabled.

Years ago, (around 8 or so), our son was a bathroom hogger. Don't know how else to describe a person that stays in the bathroom for hours.

We went nuts. Alan had to get up to go to work, and of course he had to go to the bathroom. Well, Frank was in there and he wasn't coming out. And at night, if one of us had to go, well forget it. I was on Metformin at the time, and let me tell you, that stuff is murder on the gastrointestinal tract.

I had a 90 year old woman who lived across the street and she had two commodes. I didn't even know what a commode was until I was in her house and her aide said "we have two, do you know anyone who can use one?"

Well, she didn't have to ask me twice.

We put the commode right next to our bed. The only time we used it was when Frank was in the bathroom. Let me tell you, you have no idea how handy that darn little thing was. My son was about 18 at the time.

Now that I think of it, I should have boxed his ears way back then, but I didn't want to make noise. Alan used to get furious and say "why on earth should we have to use a commode?" Because my 90 year old neighbor was named Dottie, we called the commode Dottie's Potty. I kid you not.

For two years (until my son moved away), we used Dottie's Potty.

Saved my sanity, let me tell you.

Melody

Kmeb,
I tried one of those canes with feet years ago. I just got tangled in the feet. I never could dance because my feet don't cooperate. I've never seen crutches with feet. I don't think they would let you move forward with them very well. But you are right in the way I'm using them. For support. I can't stand and push off with the right leg.

Melody there is no way I'm using a commode. Even one called "Dottie's Pottie". Thanks for the cute post tho. It made me grin. There is no way it could be cleaned and clean it without making a mess somewhere. I'm verrrry uncoordinated right now.

Billye