Re: visited my rheumy today ( - followup on strange bone problems . . .)

June 9, 2006

In a message dated 6/9/06 5:16:21 PM, patricia.overell@... writes:

> I do take Fosamax, but it's

> obviously not enough to stop the bone loss, and 500mg of Metformin for

> the steroid induced diabetes.

>

What are your dexa scan scores such as a z score?

Pris

June 10, 2006

, so sorry to hear about all of the testing you had to endure...How

many years have you been on the prednisone? I know how you feel, everytime I

try to lower my dosage of prednisone to 5mg's it never works...Back up to the

7.5mg and sometimes 10mg..Hope the Humira works for you, Hugs

Overell <patricia.overell@...> wrote: After my abnormal

bone scan a month ago, my rheumy sent me to a bone

specialist who ruled out Multiple Myeloma (cancer) and Osteomyelitis

(infection) - thank goodness! He seemed to think the rib fracture

that won't heal is a result of long-term prednisone use, and that the

other areas are inflamation from arthritis, not infection. He still

does want to do an MRI of my left shoulder, which I waiting on Blue

Cross to approve. He did not want to do a bone biopsy because he said

my bones were too fragile - again, because of the prednisone.

Everytime I try to get below 7.5mg, my sed rate starts climbing, even

with taking 20mg of methtrexate weekly. I do take Fosamax, but it's

obviously not enough to stop the bone loss, and 500mg of Metformin for

the steroid induced diabetes. Along with calcium, folic acid, vitamin

C, vitamin D, etc.

The fluid from my knee still shows very high levels of inflammation

even though my sed rate is below 20, and the specialist thought that

my shoulders, upper back, rib cage, and sternum area would show the

same if tested.

Today I went to my rheumy for my monthly visit. Now that he's assured

that there is nothing else going on, he's starting me on Humira. If

Blue Cross will approve it without trying Enbrel first (I'm not sure

exactly why he prefers it, but he does). He says Blue Cross usually

wants to start with Enbrel, but Blue Shield with Humira. Doesn't make

much sense to me! Hopefully the Humira will work and I'll be able to

taper off the prednisone completely. While I still have some bones

left (I'm only 57)!

Grandchld #3 will be making an appearance in a couple of weeks, this

business of not being able to lift my babies or get down on the floor

to play with them bothers me more than any of the pain or other

limitations!

So, I have a treatment plan. What I don't have, and probably never

will get, is any specific diagnosis or explanation for the multiple

joint inflammation without the markers in my blood chemistry.

--

South Pasadena, CA

See my galleries! - http://www.pbase.com/arenared986

__________________________________________________

June 10, 2006

In a message dated 6/10/06 4:10:47 PM, lindayeakel@... writes:

> , so sorry to hear about all of the testing you had to

> endure...How many years have you been on the prednisone? I know how you

feel,

> everytime I try to lower my dosage of prednisone to 5mg's it never

works...Back up to

> the 7.5mg and sometimes 10mg..Hope the Humira works for you, Hugs

>

I have exactly the same problem.

Do not seem to make it without 7.5 mg. minimum.

I would LOVE to be on 15!

Have been on it ten years, 5 mg to 20 mg.

Don't seem to have many side effects....no bone loss, funny looking face, or

skin problems.

I have gained a few pounds...

Pris

Skateboarding, slam-dunking, hoop jumping pigs from Letterman, Oprah, Good

Morning America, and Animal Planet!

www.valentinesperformingpigs.com

June 11, 2006

Hi, . Thanks very much for the follow-up post.

That's good news and bad news, but mostly good. I hope Humira will help you

big time.

How long have you been taking prednisone and how much?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] visited my rheumy today ( - followup on strange

bone problems . . .)

> After my abnormal bone scan a month ago, my rheumy sent me to a bone

> specialist who ruled out Multiple Myeloma (cancer) and Osteomyelitis

> (infection) - thank goodness! He seemed to think the rib fracture

> that won't heal is a result of long-term prednisone use, and that the

> other areas are inflamation from arthritis, not infection. He still

> does want to do an MRI of my left shoulder, which I waiting on Blue

> Cross to approve. He did not want to do a bone biopsy because he said

> my bones were too fragile - again, because of the prednisone.

> Everytime I try to get below 7.5mg, my sed rate starts climbing, even

> with taking 20mg of methtrexate weekly. I do take Fosamax, but it's

> obviously not enough to stop the bone loss, and 500mg of Metformin for

> the steroid induced diabetes. Along with calcium, folic acid, vitamin

> C, vitamin D, etc.

>

> The fluid from my knee still shows very high levels of inflammation

> even though my sed rate is below 20, and the specialist thought that

> my shoulders, upper back, rib cage, and sternum area would show the

> same if tested.

>

> Today I went to my rheumy for my monthly visit. Now that he's assured

> that there is nothing else going on, he's starting me on Humira. If

> Blue Cross will approve it without trying Enbrel first (I'm not sure

> exactly why he prefers it, but he does). He says Blue Cross usually

> wants to start with Enbrel, but Blue Shield with Humira. Doesn't make

> much sense to me! Hopefully the Humira will work and I'll be able to

> taper off the prednisone completely. While I still have some bones

> left (I'm only 57)!

>

> Grandchld #3 will be making an appearance in a couple of weeks, this

> business of not being able to lift my babies or get down on the floor

> to play with them bothers me more than any of the pain or other

> limitations!

>

> So, I have a treatment plan. What I don't have, and probably never

> will get, is any specific diagnosis or explanation for the multiple

> joint inflammation without the markers in my blood chemistry.

>

> --

>

June 11, 2006

In a message dated 6/11/06 11:44:49 AM, patricia.overell@... writes:

> Pris, that's one of the strange things - at least to me. I don't have

> the numbers handy, but my bone scan showed very mild osteopenia in my

> hip

>

The hip is the most important reading, we have been told.

Because I am on steroids, I get a scan every 2 years.

So far, readings are normal. In fact, I have some PLUS readings, which

shocked the doctors.

But all my life have been a walker.....always on my feet (good for bone

density).

I suggest people get a copy of their scans so they can compare and talk about

the numbers....

Pris

June 11, 2006

, I've been on prednisone for just about two years now. I started

at 20mgs, tapered to 10 mgs and added methotrexate after about 3

months, first 10 mgs and then 20mgs (oral). I've been on the 7.5 mgs

of prednisone since the first of the year. I take Fosamax D and

calcium (citrate), folic acid, Metformin for my steroid-induced

diabetes, Celexa to counter the depression and anxiety from the

prednisone, Trazodone to help me sleep, Lipitor (since before my PMR

dx) and lots of vitamins. I had been using an estrogen patch, but had

to discontinue that after my lumpectomy in April.

My sed rate was 92 when I started, and has been below 20 for the last

3 months - but the white count in the fluid from my knee has been sky

high both times it's been tested, in February and again last month.

The overall pain and muscle spasms from the PMR have eased quite a

bit, but the joint pain (knees, shoulders, upper back, and sternum

area) is far worse.

I have Vicodin that I use sparingly. I was using Ultraset, but had a

weird interaction between it and the Celexa - I was really beginning

to think I had Alzheimers! But it went away for the most part when I

stopped the Celexa, although I still have some short term memory

problems, have trouble concentrating, and occasionally say something

different than what I intended ( like " hot dog " instead of

" hamburger " , which is strange because I hate hot dogs!). Of course,

that could be the " Fibro Fog " . . . okay, probably more than you ever

wanted to know! Gotta take advantage of a good day to put my

thoughts into words!

Thanks for listening,

On 6/11/06, <Matsumura_Clan@...> wrote:

> Hi, . Thanks very much for the follow-up post.

>

> That's good news and bad news, but mostly good. I hope Humira will help you

> big time.

>

> How long have you been taking prednisone and how much?

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

> [ ] visited my rheumy today ( - followup on strange

> bone problems . . .)

>

> > After my abnormal bone scan a month ago, my rheumy sent me to a bone

> > specialist who ruled out Multiple Myeloma (cancer) and Osteomyelitis

> > (infection) - thank goodness! He seemed to think the rib fracture

> > that won't heal is a result of long-term prednisone use, and that the

> > other areas are inflamation from arthritis, not infection. He still

> > does want to do an MRI of my left shoulder, which I waiting on Blue

> > Cross to approve. He did not want to do a bone biopsy because he said

> > my bones were too fragile - again, because of the prednisone.

> > Everytime I try to get below 7.5mg, my sed rate starts climbing, even

> > with taking 20mg of methtrexate weekly. I do take Fosamax, but it's

> > obviously not enough to stop the bone loss, and 500mg of Metformin for

> > the steroid induced diabetes. Along with calcium, folic acid, vitamin

> > C, vitamin D, etc.

> >

> > The fluid from my knee still shows very high levels of inflammation

> > even though my sed rate is below 20, and the specialist thought that

> > my shoulders, upper back, rib cage, and sternum area would show the

> > same if tested.

> >

> > Today I went to my rheumy for my monthly visit. Now that he's assured

> > that there is nothing else going on, he's starting me on Humira. If

> > Blue Cross will approve it without trying Enbrel first (I'm not sure

> > exactly why he prefers it, but he does). He says Blue Cross usually

> > wants to start with Enbrel, but Blue Shield with Humira. Doesn't make

> > much sense to me! Hopefully the Humira will work and I'll be able to

> > taper off the prednisone completely. While I still have some bones

> > left (I'm only 57)!

> >

> > Grandchld #3 will be making an appearance in a couple of weeks, this

> > business of not being able to lift my babies or get down on the floor

> > to play with them bothers me more than any of the pain or other

> > limitations!

> >

> > So, I have a treatment plan. What I don't have, and probably never

> > will get, is any specific diagnosis or explanation for the multiple

> > joint inflammation without the markers in my blood chemistry.

> >

> > --

> >

>

--

South Pasadena, CA

See my galleries! - http://www.pbase.com/arenared986

June 11, 2006

Pris, that's one of the strange things - at least to me. I don't have

the numbers handy, but my bone scan showed very mild osteopenia in my

hip and lower back (except for three areas of my lower back, which

correspond to areas injured in my accident), but my shoulders are

another story!

On 6/9/06, NELLIESTAR@... <NELLIESTAR@...> wrote:

>

> In a message dated 6/9/06 5:16:21 PM, patricia.overell@... writes:

>

> > I do take Fosamax, but it's

> > obviously not enough to stop the bone loss, and 500mg of Metformin for

> > the steroid induced diabetes.

> >

>

> What are your dexa scan scores such as a z score?

> Pris

>

June 11, 2006

I just had a dexiscan the results are not good at all. They compared it to one 4

years ago although they should have had one 2 years ago. I don't know what that

is about. 2 years ago the doc had told me it really looked good. So when this

came out this way this time I spoke to the doctor who had interpreted the latest

results. I wanted to know if last time I had been mislead or did I really

deteriorate that much in 2 years. I had deteriorated that much in the last 2

years.

I have been on Fosamax for several years and I don't know what happened here. Is

there something better, or something to be used with Fosamax? I see my Rheumi in

2 weeks so I want information ahead of time.

Another bad thing in that report, severe degenerative disc disease. The disc

problems had shown some before but this last 2 years has done it. My GP wants to

do an MRI but I see no reason to do that. I did agree to have it done.

Additionally, since I was a teen I have had sporadic pain in my hips when in

bed.

It feels like a spike right in the joint. Recently that has gotten bad.

Sometimes it feels like the joint slips. Other times movement really hurts. I

have an exerciser and 30 seconds into it I get a very sharp pain in my groin.

Searching I found that females sometimes have that as a symptom of a hip

problem. Strangely walking has never been, nor is it now, a problem but it is

changing. Since I have long had hip problems I wonder how my present condition

enters into this. I know hip fractures and related problems are not uncommon for

my age. Because of the long-standing problems I have not asked for any

diagnostics be done on the hip. That problem escalating along with the DDD is a

little much. I may have to talk to the doctor about that hip as it is getting so

much worse.

I know I have rambled on about this, but this group is tops of all my groups in

being helpful. I have found little helpful information on the hip problem, the

DDD, or oteopenia.

BVan (Betty)

>

> In a message dated 6/9/06 5:16:21 PM, patricia.overell@... writes:

>

> > I do take Fosamax, but it's

> > obviously not enough to stop the bone loss, and 500mg of Metformin for

June 11, 2006

Betty, it sounds like you and I might have some of the same problems. How have

you been taking the Fosamax? In the past few years, I've just been taking it

with the other morning pills, then for a while, I took it the night before. Now,

I get up early on Sunday morning when I'd rather sleep, and take that one pill

with water and find something to do for an hour before continuing my day. The

instructions say not to go back to bed after taking it, take it with a glass of

water on an empty stomach, stay somewhat active for the next hour, then get on

with my life. Do you, or any of the others, do that?

Although the words haven't been spoken, my lumbar discs are going south in a

hurry, too. Discs in my Cervical spine are bad also, and started first. I've had

MRI's done, and something 'significant' was found, but that's all I know, and it

seems that nobody wants to tell me what it is. I only know that I'm having

trouble with my Sciatic nerve between my spine and right hip. The Pain

Specialist I went to said to keep taking Prednisone, that'll fix it!

Dennis

Re: [ ] visited my rheumy today ( - followup on strange

bone problems . . .)

I just had a dexiscan the results are not good at all. They compared it to one

4 years ago although they should have had one 2 years ago. I don't know what

that is about. 2 years ago the doc had told me it really looked good. So when

this came out this way this time I spoke to the doctor who had interpreted the

latest results. I wanted to know if last time I had been mislead or did I really

deteriorate that much in 2 years. I had deteriorated that much in the last 2

years.

I have been on Fosamax for several years and I don't know what happened here.

Is there something better, or something to be used with Fosamax? I see my Rheumi

in 2 weeks so I want information ahead of time.