Off Topic: This is something I have to share
 

I'm quite down physically and mentally lately,
Someone on the Sjogren's forum posted this last night and it's so spot on, I wanted to share. It's probably not appropriate but you don't have to read it if you don't want to:

"I feel I am ready
to say it out loud,
to stop being stubborn
and quit being proud.

It's finally hit me
that something's not right,
I've been fighting and battling
with all of my might.

A thief has come calling
and taken me to hell,
has robbed all my essence
and left just a shell.

He stole all the fun bits
and trashed what was left,
what he did to me
was not just a theft.

The days I remember
being bright and pain free,
of smiling and laughing
and glad to be me.

I'm tired and sad
depressed and quite down,
I'm feeling real lonely
even though help's around.

So now I must grieve
for the loss of my past,
relax and accept
some things never last.

And when I return
to this life I have now,
I know I will cope
and survive it somehow.

So wait for me friend
whilst I take time for me,
and when I return
much stronger I'll be.

From Mim xxx"

Billye

Beautifully said Billye:

Thanks for sharing.

Melody

Thank you
 

Billye,
A truly lovely sentiment and probably, truth be known, once that many of us can or have shared.

It does brighten an otherwise somber outlook!

Alkymst

I have been there! Thanks for sharing.

Thank you for that. I'm sorry your having a ruff time. I don't know if you go to the bookstore but in the recovery section they have really good daily affirmation books. I really think they help. Sending hugs

Hi Billye
 

Reading the poem really makes me understand the suffering you have endured. You are such a kind person who shares so much with everyone,and it's not right that you have gone through so much rubbish.

So many people can relate to this poem. I myself feel like I have been through entirelt too much too. This PN is a form of torture as far as I am concerned.Torture everyday both emotionally and physically. But somehow we soldier on.

I really really hope that you are not feeling so down, and if you are that it is very short lived.

Thank you for sharing the poem.:)

Emotional now
 

I've been quite emotional the last few days. I am trapped in the house and suffering quite badly. I don't know if it's another break or if the inflammation is rampant again. I'm due to go in on Tuesday for another monitoring of my Hemoglobin and Hemoticrit. I am also to have blood drawn to monitor sed rate, C-Reactive Protein and another inflammation marker I can't remember right now. So we should have some answers soon. But I'm finding I have no relief from the pain except for sleep (sleep meds are taken). I've been on crutches the last few days because I can't put my weight on my legs. It's not the neuropathy, it's more in the joints. So I was feeling really sorry for myself when this little poem was posted on the Sjogren's forum. It provided me with the hysterical crying jag I needed. I just needed some release. I don't usually let myself release with tears because I spend days eyewise recovering. So everything was all pent up inside.

I thank you all for replying and I hope the little verse helped someone. It was from another Sjogren's patient who suffers pretty badly. I'll try not to continue my pity party. :p

Billye

Thank you
 

Having Sj Syndrome myself,it just get's harder,well that look Drs. get when they look in your mouth,like they never seen a DRY mouth like that before.
Are being along when you hurt is so much well it is scarcy,we don't want to go through another another painfull broken bone,our poor dry eyes. Bless
you honey and that poem will be passed on. :grouphug::grouphug: Sue

I am so sorry to read that you suffering so much Billye, i do hope they can find out why this is happening, is there anyway your GP can adjust your medications to at least give you some relief, until they can sort this out for you ?

Brian :)

And--
 

--don't worry about starting a pity party--most of us have from time to time; it's practically an institution at these boards. :rolleyes:

If I'm understanding you correctly--and tell me if I'm not--it seems as if your inflammatory processes are more rheumatoid at this point than anything else, whacking your bones and joints; have you been on any of the more recent RA meds, or are they contraindicated with the concurrent Sjogren's? (I keep thinking there must be some combo that hasn't been tried yet that does NOT involve bone-attacking steroids, which would probably only make your bone/joint issues worse . . .though you may have been through a lot of them . . .the problem with so many immune-modulators is that they produce their own problems one then has to take compensatory stuff for, and by the time one is taking mutliple substances one doesn't know where the "original" conditions end and the substance-induced ones begin . . . )

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

Oy--
 

--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 . . .

Oh, rats...
 

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

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. ;)

ooops cross purposes
 

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

I found...
 

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...

Billye, Just wish that I had some good
 

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

Mrs D, please?
 

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
 

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

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:hug:

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 and 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". :p 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

Billye and Mrs D.
 

Billye, This is not something to be proud about. If you take sleeping pills, and awaken during the night, you are totally at risk getting out of bed. That's how most older women end up breaking their hip--they get out of bed in the middle of the night on sedatives. A commode is a simple thing, and, really, it's not hard to rinse it out during the day. It will keep you safe, and that's what we all want for you.

In terms of the forteo, it is reported, and I've read the studies, to help bone pain even before it helps heal the fractures, and it did that for me. Yes, after 2 months I had new neuropathy symptoms, more like small fiber, and my doctors decided to stop it. Those symptoms disappeared within days, and are NOT a reason for you to defer this. There are zero reports of this anywhere; my calcium AND my magnesium were high, and my cholesterol and triglycerides. Something was going on with me, and we don't know if it's the forteo or something else. My neuro said he saw 5 cases of small fiber neuropathy over those 2 weeks, and thought they were viral.

But here's my question for Mrs D: Billye tells me the endocrinologist she saw told her she can't take Forteo until she "builds up" her vitamin D level. So she said Billye has to wait at least month. As we all know, a month is a very long time in Billye's life. My understanding is that if you take the active form of vit D by mouth, you have a good level pretty immediately. Also, if her levels aren't great, all it means is that calcium isn't going to be absorbed well in the gut. So what's the harm in starting the Forteo in this case? I don't get it. I was told, when taking Forteo, to take NO MORE than 500 mg Calcium/day, because they don't want the calcium to go too high.

Does this make sense to you, Mrs D? Wings, I know you've been reading about Vit D--does a person have to spend a month building up stores of this to be able to absorb Calcium?

Billye, I wish we could all be there to fight for you. The pain is exhausting you, and I don't think you have an advocate.

Also, what about IVIG for the rheumatic disease?

Finally, I was given leucovorin when I was given Methotrexate, and while I didn't take either, just stared at the bottles, I was told to take the leucovorin 8 hours before the mtx, then something like 8, 12, 24, 35 hours after. He wanted me to using it as "rescue". I dont know the exact hours, but it wasn't just one dose.

Billye:

Please see email.

Cathie

perhaps...
 

this explains it:

http://www.ciaomed.org/articles.cfm?articleID=361

This is a difficult subject.

I think we may find that just fixing low Vit D...fixes much of osteoporosis issues, without the "big guns". Vit D also does other things as well.

I have a problem understanding the value of Forteo AFTER using the other drugs first--which seem to prevent new bone building. I think we need to see more studies on this. There is something in the American food chain/culture that makes us one of the highest in osteoporosis in the world.

http://lpi.oregonstate.edu/infocente...inD/index.html

Billye--- if you take the folinic--- you do not need any other. The whole question is whether you are utilizing the
typical common folic at all. Your anemia, and pain levels indicate you may not be using folic properly...not methylating it
in the body. Folinic is already partially methylated and is more bioavailable. And you probably don't need high doses, since it works better etc.

I can't advise Billye or Liza on this subject...it is too new and there are studies all over the place like this one:
http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus
Given Lilly's track record with skewing studies (4 drugs so far) I am loath to believe them now.

I do think Billye needs to address why she is breaking only on one side. I am trying to recall her knee replacements, and was there a hip too? Is there a reason for the breaks in the pelvis only on the one side?

On the other hand when things get as desperate as Billye seems now, with a new fracture...decision making becomes more urgent.
I think in the end Billye you will need to rely on your doctor for this.

At least I made you smile.

So no Dotty Pottie today, right??

So just be careful, okay??

Melody

What a mess!!!
 

This has gotten ridiculous. I am to see the doctor today and I've printed out everything. I don't know what the correct step to take is. I'm hoping he will.

Mrs. D, the breaks are all over the place, not just on one side. I've got sacral breaks on the right and left and accross S-3. I've got a pelvic break that is new on the right side and an old one that is healing on the left. I've got a tailbone that is now growing crooked. I'm sure there is one in the thoracic spine too. It hurts too much. The right foot and the left ankle broke. I'm really ready to go to bed and let someone else sort it all out.

I'll have some more pieces of the puzzle this week. I see the rheumie for repeat bloodwork and the hematologist to see what he turned up.

Oh, you don't want to go to the emergency room on a week-end around here. The on-call out of town doctor gave me Lodine for the pain on top of my Indomethacin. Fortunately, I knew better and tossed that prescription. They gave me Demerol and Phenergan, which I'm allergic to and then had to chase it with Benadryl to stop the allergic reaction. Can you imagine how dry I was. I'm just now starting to recover from the dryness. What is so frustrating is that I handed them a computer printout of all my meds and a list of my allergies. I won't go to the emergency room on a weekend ever again. I'll just bleed until Monday, thank you.

Well. This thread should stop. I didn't mean to write a drama. But please everyone lets keep the info about Forteo alive. Let's see what info we can turn up. It's such a new drug and a lot of us will suffer from broken bones and osteoporosis as we age. The fact that it seems to stop bone pain is a miraculous thing. I'm in misery and if that can be stopped, I'll risk a little more neuropathy.

Billye

I just wanted to send hugs and understand how you feel. Mentally and physically I'm really struggling. I wish I had more advice but am just trying to take 1 day at a time. Many hugs and I hope you get some relief soon. On the vitamin d level and osteo. I'm not sure why I'm adding this but I have osteo but very good vitamin d levels. Ok now many hugs

Billye,

Now that I have seen this thread, I wish I had something helpful to say. I'm so sorry you're having such a terrible time.

rose

Hey Billye

Go ahead and vent...I think every one on here listens.

Anyway, one thing to consider, is that neuropathy does affect joints. Joints are innervated, tendons and ligaments are innervated, as of course are muscles....any one of these things gets off and you have joint dysfunction. You should see my hands....my ankles and feet are going too, and I have no rheumatoid markers. For me, it is something else, and it feels so darn much like bone problems, but a loss of proprioception makes joints unstable and they wear down leaving deformity, swelling and pain.

I gave in and took my free samples of Lyrica, and guess what, insurance won't cover it. It helps a tiny bit. I tried Neurontin, which they do cover and my husband almost left (not really but I do not know how he puts up with me)...I was a witch....I wonder what Lyrica costs????

Anyway, I have additional testing coming up, thanks to doing a huge genealogy that took up 6 pieces of tag board (just my paternal grandmother's side). Yes, they were an obsessive compulsive lot of people to keep those kinds of records, and some of that OCD was passed on to me, for undertaking this kind of genealogy. If it gets me to a diagnosis, great, if not, at least it kept me busy. I will let you guys know what we find, and don't find. But it is important to have someone listen....we hear ya.

A change in plans
 

The blood work today shows my H & H (hemoglobin and hemotacrit) dropping slowly again. But it is still in an acceptable range. We're establishing a new plan. I'm holding steady where I am with the methotrexate until we get the new sed rate results. (later today I hope). If they are down, then we will stay where we are with the immune system drugs. But he has added Forteo and we will see what happens. I've canceled the appt with the hematologist as all bloodwork at the hospital was normal. I see no reason at this time to pursue a bone biopsy. If the sed rate hasn't gone down then Plaquenil is being added. But I expect the sed rate to be down. I feel that the pain I'm suffering is the fracture and the neuropathy in the area.

I will keep a careful journal to see if the Forteo causes any more neuropathy symptoms. It will be hard to tell because my neuropathy is so pronounced anyway.

Mrs. D, the rheumie is testing for folic acid and says it is o.k. How do I know for sure?

Everyone cross your fingers. I'm in a holding pattern.

Billye

Crossing fingers and toes too!!!

Mel