PAGETS DISEASE

[barbc56]

I may or may not have Paget's Disease. I have a high Alkaline Phosphatase. This has been monitored and I just had a blood test which shows the high ALP is from the bones and not the liver.Very unlikely to be cancer. I think less than one half of one percent.

It's easily treatable.

I am now forming a fourth kidney stone in fourteen months. I had the last one removed in March. Supposedly, kidney stones may occur with Pagets but of course there are lot of other causes.

The high ALP also happened about ten years ago and my bone scan was fine. I wouldn't be surprised if this is also the case here or if I do, I have both. At that time, the ALP did return to normal.and stayed that way until the last nine months. Now it's going back up.

I'm not looking for medical advice per se such as lowering the ALP, getting rid of a kidney stone, etc. etc. as I have a very good PCP and Urologist who understands that depending on the location of the kidney stones, they can indeed cause pain. He's also had kidney stones, so that helps.

But I would be interested in others experiences and if the bone pain is similar to Fibromyalgia.

Thanks in advance.

Barb

 

[Kati]

Sending my best wishes to you @barbc56 and raising my glass to the competent drs that you seem to have in this regard.

 

[barbc56]

Thanks @Kati I appreciate your thoughts.

I'm not that worried at this point as each outcome could be a lot worse. It's actually the stones that make me miserable, as so far they've been located at the bottom of the kidney so don't pass. This causes pain but mostly I'm very uncomfortable, can't sleep and of course all this makes me crash. I've become quite the contortionist trying to get comfortable. I've never had stones before this.

Again thanks. BTW, what's in the glass?

Barb

 

[Kati]

Thanks @Kati I appreciate your thoughts.

I'm not that worried at this point as each outcome could be a lot worse. It's actually the stones that make me miserable, as so far they've been located at the bottom of the kidney so don't pass. This causes pain but mostly I'm very uncomfortable, can't sleep and of course all this makes me crash. I've become quite the contortionist trying to get comfortable. I've never had stones before this.

Again thanks. BTW, what's in the glass?

Barb

Hi @barbc56 I hear kidney stones hurt very bad. So sorry about that.

I am not all that familiar with Paget's- is there any treatment that works to control it?

And the glass I am raising is a magic glass. You pick the liquid you want- but I am voting for Bailey's on ice for tonight Extra shot for you.

 

[lansbergen]

The immune modulator I use, inhibits Alkaline Phosphatase.

 

[barbc56]

@Kati Yes, there are medications you can take which stop the Pagets. It's almost always pretty localized so doesn't spread. If I have it, it's been caught early. Some people who have it are asymptomatic like I am never realize they have it.

@lansbergen What medication do you take?

Thanks.

Barb

 

[Jonathan Edwards]

In general there is no pain from Paget's disease itself, although there may be in a small proportion of cases. Any pain is usually due to affects on things near bones. A common problem with Paget's in the pelvis is that it thickens the bone around the hop so that the hip wears out and is painful to walk on. Paget's in the spine will cause nerve root problems like sciatica. Generally speaking these problems are very specific and very local although there are people with widespread patches of Paget's.

A raised alkaline phosphatase with kidney stones immediately raises the likelihood of primary hyperparathyroidism. I assume this has been looked for with a PTH and calcium levels. Paget's itself is not associated with kidney stones as far as I know, except by coincidence.

 

[lansbergen]

@lansbergen What medication do you take?

Levamisole

 

[barbc56]

A raised alkaline phosphatase with kidney stones immediately raises the likelihood of primary hyperparathyroidism. I assume this has been looked for with a PTH and calcium levels

Funny you should mention that. I am waiting for a call from the urologist as he wants to add checking my PHT levels before a bone scan. My PCP will test with borderline high calcium levels but she wanted to see what he says. I guess low vitamin D can reduce calcium levels but now I'm getting into Dr. Google territory.

My BIL is a hematologist/oncologist and also reassured me about the very low odds of cancer, so I'm not worried anout that. He mentioned that Hyperparathyroidism used to be referred to as moans, stones, groans and bones with psychiatric overtones.

Time will tell. Thanks.

Barb