Author Topic: Sjogren's and bone pain  (Read 6808 times)

inga

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Sjogren's and bone pain
« on: April 05, 2010, 07:25:30 AM »
This may be interesting to some.

http://www.ncbi.nlm.nih.gov/pubmed/15111378

Katybarstool

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Re: Sjogren's and bone pain
« Reply #1 on: April 05, 2010, 01:13:54 PM »
Thanks Inga. Is the scapula the elobow?

Kathyx

JannaLee

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Re: Sjogren's and bone pain
« Reply #2 on: April 05, 2010, 02:34:47 PM »
I think it's the shoulder blade.

Janna

inga

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Re: Sjogren's and bone pain
« Reply #3 on: April 05, 2010, 03:01:55 PM »
It's the shoulder blade.

In my reading on distal renal tubular acidosis, I have found that this bone pain can be anywhere, long bones, spine, and the RIB CAGE.  I have seen so many posts on costrochondritis.

This dRTA can be fairly subclinical because, the blood urea nitrogen (BUN), Creatinine, and glomerular filtration rate can be NORMAL.

This is a kidney condition that can have a lot of normal blood work!  And it drains the bones of calcium, causing osteomalacia which could be mistaken for osteoporosis.

What happens is your bicarbonate level in your blood is low, your calcium is low (and pulled from bones) and your potassium (K) is low.

Your chloride level and sodium levels are high, but especially chloride.
All this takes a toll on your bones....and causes all kinds of other symptoms.   You may also see it diagnosed as interstitial nephritis.  It also causes kidney stones.  Keep an eye on your blood work!!

BTW, this is DRTA type 1, non-hereditary.

JannaLee

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Re: Sjogren's and bone pain
« Reply #4 on: April 06, 2010, 02:34:11 PM »
Inga,

I think you are very clever, thank you for the information and all your interesting remarks on the forum.

Janna

inga

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Re: Sjogren's and bone pain
« Reply #5 on: October 05, 2010, 08:17:47 AM »
I am bringing this out of storage.

Any one with bone pain really should consider having a BMP, arterial blood gas, and urine testing.  This metabolic acidosis absolutely robs your bones of minerals.  They get soft and painful.  For me, I can barely walk any more, my feet, back, spine and ribs hurt so badly.  I have had one unexplained fracture after another....and still passed the DEXA!  Osteomalacia is not osteoporosis and it does not show on DEXA scan.

Basically the condition happens when your kidneys fail to excrete acid.  They DO excrete too much potassium.  Calcium can be low or high, but either way it often lands in the kidney where it forms micro or macro calicifications, or kidneys stone....or nephrocalcinois.

Sicca is associated with this, either +SSA/SSB or without the antibodies.

After watching this for over a year, because I had access to my labs...I have no idea how long I have had lab abnormalites, because other than being told here and there that K+ was low, or Ca was low....I have no idea.   I know this has been either subclinical as in incomplete distal renal tubular acidosis or else clinical and I was told 'Dont worry about it'.  Right, now my bones are shot and I have no concept if this can be recovered at my age.  Interestingly it got much worse after my estrogen was halted.

I would appreciate hearing from those with osteomalacia or dRTA.

Sissy

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Re: Sjogren's and bone pain
« Reply #6 on: October 05, 2010, 11:26:05 AM »
Inga..Your right on, and I want to say....Go girl.  I enjoy reading your posts. Sissy

inga

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Re: Sjogren's and bone pain
« Reply #7 on: October 05, 2010, 12:30:08 PM »
Thank you, obviously, I am stuck sitting on the couch, burning my thighs with my laptop and posting away, lol.

I think maybe docs should do Medical Sudoko....don't you think that would be a great way to diagnose.....lol?

Rayven

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Re: Sjogren's and bone pain
« Reply #8 on: October 05, 2010, 02:16:50 PM »
Medical Sudoku... Inga, I think you may be onto something... ;)

I was the power of attorney for my grandparents (still now for my grandfather) and there were multiple occasion where looking through a LONG trend of blood work enabled me to see a pattern that might have otherwise escaped notice.  This proved especially true when multiple doctors were treating my grandparents and I was the one asking for copies of everything from everyone so I could make the best medical decisions on their respective behalves (is that a word? behalfs? behalves? Anyway...)

Some trends in our bodies seem to come on so gradually... Even when numbers are in the "normal" range, there can be fluctuations that I have noted.  I hope everyone has access to their records and had excellent counsel on reading your own results.  Even if it's just to say "I don't understand what these values are telling me or what this test denotes." Everyone has the right to answers.

Thanks for the insight, Inga.

Missellie

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Re: Sjogren's and bone pain
« Reply #9 on: October 06, 2010, 07:18:59 AM »
First to Janna,  if this is a recent picture and you are 48 you look unbelievable.   

Inga, Is a BMP a regular blood test  or is it something specific your doctor would have to order.   Also, Urine Testing - is this just the regular test where you urinate once and they stick a stick in the cup to see if you have an infection?

I am going to have a Bone Density test (is that the DEXA) in a couple of weeks.   I have shrunk one inch over the last couple of years and an MRI revealed a compound fracture in my T spine.   Don't know where it came from but my neuro doesn't seem to concerned about it. 

I was diagonosed with SJS this past June and am on Placquenil and Neurontin.  I have been having the joint, muscles and nerve pain along with dry eyes and mouth for many, many years.     

Thanks

inga

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Re: Sjogren's and bone pain
« Reply #10 on: October 06, 2010, 08:11:55 AM »
BMP should include the bicarbonate level, K level and Ca level.  Also get your Vit D level.

dRTA is a complex of abnormal findings not just one.

Usually it plays out like this:

High Cloride
Low bicarbonate
Low K (Potassium)
Low Ca (Calcium)
Normal anion gap

All are usually present in dRTA.  If this complex of abnormal labs is present and the urine is alkaline (mine is 7), then the assumption is made that something is not right and arterial blood gases are done.  If the bicarb is low on these, you get hurried off to a kidney specailist...dRTA can sometimes be incomplete, that is not all the labs are off.  Basically you dont acidify your urine and cant get rid of acid in your blood.  Calcium ends up in your kidneys or tissues.  I am surprised that this is not pursued more often....they say it is 'rare'.

dRTA is found with lupus, SjS....involves Sicca, and osteomalacia.  Be really careful to rule this out before you get one of those osteoporosis treatments they advertise.

Vitamin D will often be low due to inability to use the vitamin or synthesize it in sunlight.

Osteomalacia will not show on dexa.  Usually there is flank pain, hip pain, rib pain, proximal muscle weakness, foot pain, long bone pain and unexplained stress fractures.  Docs will likely jumpt to ostoeporosis, and that can be present too....so, before you accept this, make sure your bicarb is well into normal and the other labs don't break down like the above.

inga

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Re: Sjogren's and bone pain
« Reply #11 on: October 06, 2010, 05:41:01 PM »

JannaLee

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Re: Sjogren's and bone pain
« Reply #12 on: October 10, 2010, 05:47:03 PM »
Thank you so much Ellie!

Actually that photo was taken a year ago...sadly, I'm now 49.  Guess I should change that.

You are a dear!

Wishing you wellness!
Janna

irish

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Re: Sjogren's and bone pain
« Reply #13 on: October 10, 2010, 09:00:27 PM »
Just a note about low potassium. Any time your potassium gets low people usually get a darn good case of weakness. When I was working in geriatrics we would call this weakness the floppsies cause the patients were so weak that we had to frequently help them get into bed and the minute they hit the bed they would literally "flop" down like all the starch had gone out of them.

So be sure to check with docs when you have bad weakness. Also, the fractures in the spine do not always come from kidney issues. Often it is part of the aging process and osteoporosis. The vertebra tend to thin out and then sort of deteriorate to the point that the can be pressure on nerves. It can be very painful. Irish ;D

wiccagal

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Re: Sjogren's and bone pain
« Reply #14 on: October 10, 2010, 10:31:29 PM »
I am wondering if this is something I should be concerned about!!  Somedays my collar bone hurts so much that it is a deep throbbing pain in my bone!  it thus far seems to be limited to the collar bones but it really really hurts!!  I tend to have regular blood tests but haven't had urine tests as often.. generally only when I have a uti.