[angiebaldy]

Have MGUS, concerned about bone loss at jaw line

by angiebaldy on Sat May 24, 2014 12:14 pm

Hello everyone!

It has been awhile since I have posted here but I do read and learn from other posts and am so grateful to everyone willing to answer our questions.

Before I ask my question let me give a short background on myself. I have been diagnosed with lupus since 1998. In 2012 went for labs related to the lupus but for some reason my rheumatologist ran a SPEP and from there it was referrals, more labs, bone marrow biopsy and an ultimate diagnosis of intermediate risk MGUS.

I am actually IgA lambda with 8% plasma involvement and a t(4;14) abnormality on FISH. My m-spike is in the beta region and runs between 0.8 and 0.9. IgA started at 838 went up to 1200 and current was 923.

As a result of the lupus I am on chronic steroid therapy and take 30mg prednisone daily currently. I had tried in 2012-2013 to taper off and actually got off the prednisone for a short time but had to start it again as I was unable to get out of the bed without it.

I am telling you all this because steroids can suppress the immune system. It appears that when I was nearly/completely off prednisone, my IgA was at it's highest (1200) and now that I am on it again the IgA is lower. I have asked several heme/oncs if the prednisone could be suppressing the paraprotein and most of them agree it is entirely possible, especially at the higher doses.

Here is my question. Recently (about 6 weeks ago maybe) I started having lower left tooth/jaw pain. I try not to immediately think that every little ache and pain or symptom is related to my MGUS possibly progressing, so at first I sought evaluation by a dentist. I have a pathological fear of them and have not been in a while, so I really thought I would be told I have a cavity, it would be fixed and I would be admonished for not getting regular check ups.

However the dentist took x-rays, poked and prodded and dug in the area where I am having the pain and found nothing wrong. Except .. the x-ray showed approx. 50% bone loss at the jaw line beneath one of the molars. She said this is what she sees in patients who have severe periodontal disease but I don't have any at all. I also have never been on bisphosphonates.

The dentist suggested I try to get my previous dentist (I recently moved and this is a new dentist for me) to look at my old x-rays to see if the bone loss is new or has been there. My most recent dental x-rays were from 2009 (I told you I have a pathological fear of dentists) did not show any bone loss anywhere.

At this point I tried to contact my oncologist who was out of town. Long story but suffice it to say this is not the first time I have had difficulty with his staff/communication/follow up, and I am now in the process of changing oncologists and my appointment is not until June 4th.

I realize steroids can cause bone loss but I thought that would be a general bone loss and not concentrated in one area. I had some labs completed and my m-spike and IgA are the same but my CRP is 2.25 (normal is <1.0) which was 0.6 in Jan, my sed rate is 33 (high end of normal is 20) which was 9 in Jan, and my ldh has increased from 172 this past Jan to 500. Keep in mind I am on 30mg of prednisone daily. My Hgb A1C is elevated also as a result of the prednisone at 7.1.

Could the elevated Hgb A1C be the reason for the elevated CRP, sed rate and ldh despite the prednisone?

Has anyone had or heard of anyone having a lytic lesion as their first lesion in the jaw?

I am concerned I may be progressing, but I have so much with the lupus and steroid therapy that I don't want to jump to conclusions.

By the way, my jaw pain is not constant. It comes and goes, sometimes is just an ache, sometimes sharp and sometimes none at all. It does not change with heat and cold of biting down on anything. It is not in the TMJ but the jaw line near the molars and radiates to my left ear at times.

I know this is long but I really appreciate any answers you may have.

[Multibilly]

Re: Have MGUS, concerned about bone loss at jaw line

by Multibilly on Sat May 24, 2014 10:35 pm

Given that you have been on long-term steroid treatment and you are apparently seeing bone loss in your jaw, have you considered getting an MRI to test for bone loss elsewhere in your skeleton?

I'm totally out of my league with the CRP/Hgb A1C/prednisone question, especially since prednisone usually suppresses CRP levels.

I guess the good news is that June 4th is not too far away, so that your new onc can weigh in on this pretty soon.

[angiebaldy]

Re: Have MGUS, concerned about bone loss at jaw line

by angiebaldy on Sat May 24, 2014 11:07 pm

Thanks for the reply. I tried to get my old heme/onc to do at least a scan but after speaking with his nurse and him being out of town AGAIN and calling back several times to get some answers and only getting confusion I decided I need a provider who is receptive to my needs and changed to the new one I am seeing on the 4th.

[Dr. Jatin Shah]

Re: Have MGUS, concerned about bone loss at jaw line

by Dr. Jatin Shah on Mon May 26, 2014 11:53 pm

Long term steroids can accelerate osteoporosis and suppress the immune system. As you are pursuing, I would encourage a full restaging, including skeletal survey, and a CT or MRI scan (as needed) to understand if this is progressive myeloma.

Typical bone pain due to lytic disease is constant, deep aching pain and does not wax and wane as you describe.

The LDH changes are very non specific and can be up for many reasons.

[angiebaldy]

Re: Have MGUS, concerned about bone loss at jaw line

by angiebaldy on Tue May 27, 2014 10:58 am

Thank you Dr. Shah for your reply. I so appreciate your advice. It is also encouraging to think it could most likely be from the steroids however I am seeing my new heme/onc June 4th to investigate this further.

Angie

[Sara]

Re: Have MGUS, concerned about bone loss at jaw line

by Sara on Sat May 31, 2014 3:06 am

Just fyi - I coincidentally came across this today regarding bone pain presentation and myeloma, for those interested:

Gregory R. Mundy, "Myeloma Bone Disease", Summer 1995, http://myeloma.org/ArticlePage.action?articleId=93

The author is a doctor and specialist on myeloma and writes this below. It seems bone pain can be quite variable for different people:

"Although pain is by far and away the most common manifestation, we still understand very little about what causes this bone pain. I have always been struck by the variability in bone pain. Some patients have pain which waxes and wanes without any apparent change in the radiological lesions. We are very ignorant not only about the mechanisms for the bone pain which occurs in myeloma, but also in the other common skeletal diseases as well."

[angiebaldy]

Re: Have MGUS, concerned about bone loss at jaw line

by angiebaldy on Sat May 31, 2014 9:17 pm

Thank you Sara. This was very interesting. It reassures me that I need to see my new doctor on Wednesday as planned and insist on some sort of diagnostics such as a CT or MRI. Thanks again!