Hypophosphatemia & oncogenic osteomalacia
Posted , 27 users are following.
My condition, hypophosphatemia and oncogenic osteomalcia started about 3 years ago, however, was not diagnosed until six months ago. It started very gradually with body stiffness that over time worsened to bone and muscle pain and weakness. Was examined by all kinds of specialists who really didn't know why I had so much pain just walking, sitting and getting in and out of bed. My Rhematologist had been very puzzeled by some of my blood test results concerning alkaline phosphates being 3 times as high as they should be. Vitamin D testing showed I was severely deficient. Subsequent examination, blood tests and bone biopsy by an Endocrinologist indicated oncogenic osteomalacia and hypophosphatemia being caused by a tumour somewhere in my body. The tumour gives off something that causes my Vitamin D and phosphates to become deficient in turn causing the bone pain and muscle weakness. Subsequent CT scans and PET scan have not located the tumour. Am taking medications that are helping somewhat. Want to communicate with someone who has this condition or recovered from it. Have questions about medications, rehabilitation and generally knowing about their experience.
1 like, 231 replies
ida21750 lucille
Posted
I take Phospha 250 Neutral. I usually need 3 tabs 3-4 times a day to function. But it causes diarrhea and have only been able to tolerate half that. This has me bedridden now 4 months since I can't take my full dose. Has anyone tried Immodium or an antidiarreal medicine to stop the diarrhea while taking phosphorus supplements? I'm kinda nervous to try it. Thanks.
ida21750 lucille
Posted
I saw a new Dr. who is considering putting me on Calcitriol in place of my Phospha 250 Neutral meds. She said it would work better to keep my Phosphorus levels normal. Anybody have any experiences with this? She is doing workup to see if TIO is the cause of my hypophosphatemia. Phopha 250 works but can cause diarrhea and I take 12 tabs a day.
BlueMerle43 ida21750
Posted
yes i take alfacalciferol. works great. my fgf23 dropped!
jason38654 ida21750
Posted
I was taking calcitriol and virtphos 250 at the same time. They serve two difference purposes, calcitriol is the active form of vit d. Together they worked great for me ocne they got the balance of virtphos correct. At one point I was taking 16 per day, not fun with those chalky horse pills.
ida21750 jason38654
Posted
Jadon, any side effects with calcitriol? How many Phos tabs did you need once you added calcitriol as well? Also, can TIO cause low potassium? I saw from your older post you were wheelchair bound. Can you walk now after physical therapy? How long did it take you to recover?I'm worried being bedbound so long I might not walk again even if I am cured. I can't even sit up. Thanks so much for your input and answering my questions.
jason38654 ida21750
Posted
I don't recall any side effects from the calcitriol. There really shouldn't be as long as overall they are keeping your vit d in check. I don't know about TIO causing low potassium, mine was not low.
Yes, I am virtually back to normal now just over a year post tumor recession. After getting the meds right in order for them to overcome the effects of the tumor, it allowed my fractures to heal enough for me to begin in-home therapy and eventually get to outpatient therapy. I had 3 months of in-home and about a year of outpatient, not including post surgery.
I too was very nervous and worried that I would not walk again. It took some time not only for my body to get strong enough to function, but for my mind to trust that I would be able to walk, or manage stairs, or balance on one leg, or even take the smallest step forward. I will never forget one of the first tests the in-home therapist had me do, called the 10-foot test. Basically they time you on how long it takes for your to stand up, walk 10 feet, turn around, walk back and then sit back down. It took me 4 minutes and 47 seconds! That is when it I truly realized how bad off I had really become. For comparison, the last time I did that test during my outpatient graduation, it took 12 seconds total.
Keep pushing forward! I'm happy to help answer any other questions you or anyone else may have. There isn't a lot of info out there on this so the more we can all share the better.
ida21750 jason38654
Posted
Jason, wow , you worked really hard to get well. God bless you. My muscles have significantly atrophied. Have you been able to increase muscle mass especially in your legs? Its hard to not be able to walk and see your body deteriorate. But your testimony has given me hope.
BlueMerle43 jason38654
Posted
my potassum wasnt low either.
before using alfacalciferol my fgf23 was 381, after using it a year it was down to 80!
i do have a question for you all.
on my ribs that have been fractured some weird stuff has been going on. my doctor called it 'cloudy ribs' due to the shape that has formed on my ribs. the bones dont look streight anymore. could that be a side effect of the alfacalciferol, can it be a side effect of having Tumor Induced Osteomalacia? Or maybe it isnt even related.
my fractured ribs feel like needles sticking in them, usualy summers are better pain-wise but last summer it was hurting like hell. going to see my endocrinologist next month, hope she can help me, because this is not OK
jason38654 ida21750
Posted
Yes, I too lost a lot of muscle mass from the glutes to the ankles. It took a lot of work to get some mass back, and I still have work to do, but if you stick with it it will come. I've heard that for everyday one is bedridden, you lose 1% mass to atrophy. Try adding a simple protein drink to your daily diet as well.
That's great! Keep up the spirit and the fight!
jason38654 ida21750
Posted
I posted a response but it says its waiting to be reviewed by moderator? Not sure why...
jason38654 BlueMerle43
Posted
Cloudy ribs? Not sure what they are meaning by that. Was that from an xray, or CT, or other?
BlueMerle43 jason38654
Posted
it was an ultrasound. discovered fairly unintented... they wanted to inject some painkilling fluid in the rib and doc was looking on the ultrasound when she said; "huh that s weird, never saw this before, your ribs look like clouds, weird round shapes instead of lines, no idea what this is!
So I asked my endocrinologist to look into this. The pain is just dreadful, worse than it has ever been. it worries me.
ida21750 lucille
Posted
For anyone in the Chicagoland area, I would recommend Dr. Pauline Camacho at Loyola. I have been to RUSH and UIC but found the care there subpar. She is very knowlegable in TIO and other such illnesses. I am getting workup done by her. I personally don't believe I have TIO as the cause of my phos issues though. I also have low potassium issues and low calcium now. I believe the low calcium is due to my long term phos supplementation. I have never had bone pain or broken bones.
I have extreme fatigue, weak muscles, no endurance, tingling and also abdominal edema, especially when I exert myself. When I eat high carbs my symptoms get worse. These problems were triggered after a period of fasting and then resuming a normal diet. But I guess she needs to rule out the main cause of hypophos problems which is TIO.
She thinks the fasting could have triggered TIO, she said another patient of hers started having hypophos issue after abdominal surgery. After being unable to locate a tumor, she said she treated her with a new TIO medication and now the patient is doing fine.
ida21750 lucille
Posted
How does everyone deal with having a mysterious medical condition that no one understands? I am constantly accused of being a psych case and delusional because of my inability to walk or even sit up anymore. I get this from the medical community the worst. Having issues with phosphorus for me is beyond disabling. I barely have energy at all and extreme fatigue. The stress from everything compounds this.
BlueMerle43 ida21750
Posted
i do recognise what you write. a lot. not many understand the full scale of it. i am still dealing with a father in law that thinks i m not ill at all. Makes me angry. my employer told me when my illness started i was not sick, just too lazy to work. unbelievable! i started a FACEBOOK group a few years ago, named Tumor Induced Osteomalacia. 17 members by now. i love the fact we all share stuff about our medicins, doctors and daily life with Tio. you re all welcome to join.
ida21750 BlueMerle43
Posted
Thank you. I just joined your group and I'm already learning new things and communicating with someone there about our experience. Thank you! I hear you about people thinking you are crazy or lazy. They have no idea what we go through or how strong you have to be to deal with a chronic illness. It takes a lot of mental strength and problem solving to survive each day. Thank God, He gives us the ability to do this.