Beware Sudden Osteoporosis (Forteo "Junk Bone" Merged Topic)

[ans]

My back pain's been getting worse so I had another bone density scan. One doc whom I saw about 1.5 years ago said forget this test as it's been consistently OK. Well, the last one revealed that I have true osteoporosis in the hip but not spine (the DEXA scan, I think, doesn't comprehensively cover the spine, I think). So my internist gave me some tests and I had monoclonal gammopathy in the blood test. Now I'm being evaluated for multiple myeloma and in a best case scenario, a repeat blood test w/show the first was an anomaly or that I have MGUS.

http://www.macmillan.org.uk/Aboutcan...onditions/MGUS

A Big Name spine surgeon got the test results but didn't notify me of this and I'm glad I also had it sent to my GP.

So I'm wondering if I'll be OK enough to have fusion in the near-future.

Best, Allan

[Harrison]

ANS,

Sorry about the latest finding – and one more path you may take through the maze. If you are searching the net, you may find the term “hypergammaglobulinemia” also helpful.

I am not buying the “genetic predisposition” as a causal factor. From what I learned from patients on this forum, this condition can potentially be caused by as something as simple as H Pylori (see below), or even rickettsia which is carried by ticks and other ixodes. Several people in this community have had multiple surgeries from highly reactive arthritis caused by rickettsia – which was diagnosed as Rocky Mountain Spotted Fever. One patient had spine, shoulder, wrist and knee surgeries – I actually lost count. How sad!

Any way, back to you. My questions for you:

• What did/are the docs say about your next steps?
• Can you chase down your spine T scores? Or get new ones? This seems to be a no-brainer?!
• Can you find a kick-*** hematologist to consult with on this issue?

I hope this alternative view helps you think less about scary cancer stuff, and more about possible environmental causes...

__________________________________________________


Monoclonal Gammopathy of Undetermined Significance and Russell Body Formation in Helicobacter pylori Gastritis.

Helicobacter. 11(5):506-510, October 2006.
Wolkersdorfer, Gernot W.; Haase, Michael; Morgner, Andrea; Baretton, Gustavo; Miehlke, Stephan

Background: Infection by Helicobacter pylori has been linked to monoclonal gammopathy of undetermined significance (MGUS). MGUS is thought to develop due to chronic antigenic stimulation in people with a specific genetic predisposition.

Methods and Results: We describe a patient presenting with dyspepsia associated with H. pylori-related erosive gastritis. Histopathologic findings revealed infiltration with plasma cells containing accumulated condensed intercisternal immunoglobulins, the so-called 'Russell bodies'. In addition, MGUS was present with total immunoglobulins within the normal range but a significantly decreased serum concentration of IgG subtype 3. Molecular analyses demonstrated IgH formation, T-cell receptor [gamma] rearrangement, and alterations within the IgHG3 gene sequence. Following H. pylori eradication, gastritis and dyspepsia gradually resolved but MGUS persisted for at least 22 months.

Conclusions: This is the first report to demonstrate that upon infection with H. pylori, an impaired secretory capacity of plasma cells due to specific molecular changes can present as Russell body gastritis. The molecular findings question a pathogenetic link between Russell bodies and H. pylori, but suggest genetic alterations in the immunoglobulin locus as the possible cause for both MGUS and Russell body gastritis.

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[ans]

Thanks Rich. I w/bring this up either today or next week re: H. pylori. Today am having a full-body series of x-rays that can show the degree of osteoporosis (how?) and uh, if active multiple myeloma has caused skeletal pitting (MGUS can be other things too and I appreciate your Google code-word). Naturally I lost the DEXA scan results and I think it was in Z-scores and again, naturally, I forgot how to read this despite taking stats 5 times! Am hoping this w/be an innocuous blip but my back pain has increased to that I need oxycodone/oxycontin w/Norco at times. The good thing is that I'm not pestered to pose for Playgirl all the time.

I will consult w/a doc who specializes in MUGUS and MM also.

As an aside, I had hypogamma... in the blood. A Google search of "hypogammaglobulinemia MGUS" is helpful and takes me into a confusing world of immunoglobulins, etc. that I do not understand.

Anyhow, my intent was for people not to take sudden osteoporosis as "OK".

Best/chow, Allan

[2cool4U]

I suspect that you are having a skeletal survey. This is a series of numerous regular x-rays of your skull, extremities, chest (for ribs), pelvis, and spine. It's not done to determine bone density, as regular x-rays are very insensitive to bone loss and also unable to quantify bone loss. Rather, they are used to look for areas where bone marrow disease has caused local bone destruction or local bone loss. If you wish to research the topic more, one keyword would be "lytic lesion." I can't really predict what will happen, but sometimes this is followed by a bone marrow biopsy.

Good luck and I hope it's all negative.

-tc-

[ans]

Yes, you're absolutely right. How did you know this stuff; I hope not by personal experience. I tried to argue w/the doctor to give me a bilateral bone marrow core/biopsy but he said the standard is unilateral. I've had enough stats to know that the larger the sample size, especially for something that's not everywhere (like leukemia) makes more sense. I'll still insist if I'm lucky enough not to have lytic lesions.

Wow, I sure veered off-topic here, sorry.

My intent is precisely the title.

I have a funny feeling that in a best case scenario, MGUS would r/o a fusion.

Thanks for your nice words though.

[ans]

I lucked out. No MGUS, no multiple myeloma. Weird immune system findings, whites up but am in the clear.

Now to determine the best bone builders - taking into account cost and efficacy.

I am exhausted but one's Fosomax versus another whose name I forget. Duh..

Best, Allan

[Harrison]

Well, Allan, this is mostly good news, right?!

Which white blood cells are high? Any other specifics on the immune system findings?

[annapurna]

Think about buying Osteoporosis by Reiner Bartl and Bertha Frisch. I'm fighting osteoporosis myself and was advised to buy that book as it's a good overview of the subject for medical professional and non-medical professionals together. It's got a number of recommendations to deal with the problem and covers how the drugs work.

[annapurna]

More thoughts:
The general advice I got about osteoporosis did absolutely nothing to help my condition. It was only when an internist who was prepping my wife for surgery overseas agreed to test my blood that it came out that I have rock bottom testosterone, a leading cause for osteoporosis in men. It's also really nice for me as I had prostate cancer and no doctor in the US would agree to prescribe supplemental testosterone to a prostate cancer patient, even post-surgery when I'm hypothetically cured. What I read about the drugs, though, makes me strongly suggest that you get a full blood work-up, including sex hormones, before you accept the risks of the anti-osteoporosis drugs. None of them are really "safe" just lower risk than living with little or no bone mass.

[ans]

Hi Jim! Thank you for your advice re: testosterone levels. Mine were w/in normal limits, unfortunately. Hmm, I wonder if taking testosterone might boost bone density although that certainly is risky.

How is Laura doing? Is Laura feeling better and physically active; I hope so. It's been so long since I visited this site on a regular basis.

May I ask you a question? I read, I think on this site, that the bone density/quality from these drugs, e.g. Forteo is of low quality. (Brittle?). If so, and I know your not an MD, would you suspect as I do that this makes getting fusion even more problematic if my bone density increases? I ask you b/c, well, let's face it, you and Laura are hyper-smart cookies.

My best. Wonder if you had your first snow yet, which I suspect might be true.

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