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