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  #1  
Old Sat Aug 10, 2019, 01:24 PM
shadowii shadowii is offline
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back pain

If its not one thing its another.
Now dad has some bad back pain, particularly in his lower back but he says it moves up his spine and into his groin.

Anyone have this problem because looking up the symptoms lead me to avascular necrosis and I really hope its not that

he got an mri so we will know Monday

I saw you have that condition DanL did it start three months after starting steroids

Last edited by shadowii : Sat Aug 10, 2019 at 01:45 PM.
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  #2  
Old Mon Aug 12, 2019, 01:42 AM
DanL DanL is offline
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Shadowii,

I developed AVN after about 1.5 months of taking high dose steroids. It took out both of my hips and my right shoulder. I also developed cataracts from steroids. I am very sensitive to prednisone, probably more than most.

The pain of AVN usually falls into the joints, not so much up and down the spine, although I guess that is possible. For me the pain was most obvious when transferring from a seated position to standing or vice-versa. It was alleviated initially by walking and continuously moving.

The pain from AVN of the hips goes along the upper ridge of the pelvis on the back , and is also present along the pelvis along the inner thigh up to the hip bone.

I do hope that your father is not experiencing AVN as it is not fun, and may require some waiting until blood counts, especially whites and platelets are pretty normal, although my first surgery was done with about 80k platelets with no problems, and i experienced very good pain relief within about 1 week. It took a while to get full range of motion, but it wasn't as bad as one might think.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Mon Aug 12, 2019, 02:23 AM
Meri T. Meri T. is offline
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Hello Shadowii,

I experienced back pain around 2 months after transplant. CT showed nothing on the spine, and the doctor really didnot know why my lower spine was in so much pain.

The back pain lasted for 2 weeks and subsided, reason unknown. My back is fine now.

I hope your Father falls into this kind, and the pain will subside.
Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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  #4  
Old Mon Aug 12, 2019, 04:47 PM
shadowii shadowii is offline
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welp its not necrosis, dad has a minor slipped disc that's not impinging on the nerve.

it says something that im happy he has A bone problem as long as its a more common, treatable, and not the big one (they are basically prescribing him physical therapy).

I just don't know sometimes how to give them comfort when everything is a thing

Last edited by shadowii : Mon Aug 12, 2019 at 05:02 PM.
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  #5  
Old Thu Aug 29, 2019, 01:43 PM
shadowii shadowii is offline
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Welp the pain is not related to his spine.

the bad news though is that it might be related to his kidney

anyone have any kidney stories to share
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  #6  
Old Fri Aug 30, 2019, 02:26 AM
DanL DanL is offline
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Unfortunately, drugs are processed through the kidneys or liver, which can cause kidney and flank pain. The best food is to either quit the drugs. Not always an option, and to stay exceptionally hydrated, which while inconvenient, is effective for many, check with the doctor to see if some of the drugs that are harder on the kidneys can be reduced or changed out, or maybe even add some Lasix, to help move the fluids more readily.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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