Has anyone experienced the sharp bone or joint pains after more than 6 month BMT?

[Jenny L]

My daughter Emily had her BMT last November when she was 6 year old because of her Very Severe Aplastic Anemia. Recently she has complained the sharp bone and joins pains when she has jumped off the swings or low monkey bars or slightly fell on the ground. She has been running wobbly. These have never been the issues before her sickness.

Last Thursday, during her BMT clinical visit, her doctor told us that all of these may come from her weak muscle after lacking physical exercise for a long time. But I am still very concerned and confused.

Any suggestions or advice on this?

[sandra]

Hi Jenny,

I'm not very knowledgeable about transplants, but I agree with you that the symptoms you describe are real, and probably don't have anything to do with "muscle weakness because of staying in bed" six months after the fact.

The first thing that came to my mind, if your daughter is still on cyclosporine, there have been numerous accounts of joint pain because of it (you can do a search in the message line of Aplastic Central forum "cyclosporine joint pain").
Also, if she took prednisone, somebody just posted an experience with serious side effects.

http://aplasticcentral.com/test/toas...fid=2&tid=7834

However, because of the establish link between AA and other autoimmune diseases, I would certainly look into that too, maybe asking for a referral to a pediatric rheumatologist. In particular I was puzzled by the "running wobbly" aspect, it might mean many things or nothing.

I would definitely push the doctor to really look into it.

Sandra

[Marlene]

I echo Sandra's comments. I would push for a better answer.

[Jenny L]

Hi Sandra and Marlene:
Thank you very much for your response. Emily had X-ray images on her both hips and joints that indicates a frature on her right leg. She has complained the bone pain for more than one month. Since she was completely off cyclosporine at the end of this Febuary just after three months of her BMT and she did not take prednisone ans steriod, her BMT doctors do not think her bone problem is related to BMT. She will see a bone doctor next Monday. I have to "grounded" her without any jumping and running.
Can AA and BMT made the person's bone more fragile? She has very limited physical activities after her BMT.

[Marlene]

I'm sorry to hear you and Emily have to deal with another issue. But I'm glad you were able to get an answer so you fix this.

Recently, I've been exploring the role of Vitamin D in health. Vitamin D, calcium, magnesium, vitamin K and boron are needed to build and maintain bone. My husband, especially in the early years of treatment, had little or no exposure to sunlight on regular basis. Because we are both very fair skinned, we used suncreen and stayed out of the sun.

So this prompted us to have his Vitamin D levels checked. Even after six months of supplementing with 1000ius of Vit D, his levels were still below normal.

I would make sure they check her calcium and vitamin D status to see if that is playing a part in this and to rule out the "easy" stuff.

Take care,
Marlene

[Marlene]

Take a look at this article regarding bone loss and BMTs.

http://bloodjournal.hematologylibrar.../10/3607-a.pdf

http://www.nature.com/bmt/journal/v2.../1703149a.html

[ljvoight]

Hi Jenny,
Danica has had infrequent pains in her bones. The problem is we don't know if it's normal growing pains or not!!!! Marlene, I read the two articles you have listed. THANK YOU.... I am going to ask my Dr. in our next visit if Danica should have calcium suplements.

Linda V.
Danica 11y, BMT and doing great!!!

[Jenny L]

Hi ljvoight and Marlene:
Thank you for your responses. We were told that from the blood lab results, Emily's calcium and vitamin D status are fine. Her BMT doctor said that she does not need calcium supplements. We also brought her to the pediatric orthopedic doctor who also did not think her "infrequent" leg bone pains related to her BMT treatment since she did not take prednisone and steroid and only took three months of cyclosporine. Until her next pediatric orthopedic appointment in three weeks, she was advised no jumping and running to let her fracture heal by itself. I do not think Emily's bone pain is growing pains. Her twin sister has done much more jumping and running without complaining bone pains at all. I am not convinced so far. I am going to sign up Transplant Survivors Conference, September 2008 and see if I can find more information from there.

[Marlene]

Hi Jenny,

I would have a hard time accepting that answer also. The problem with blood serum level tests for calcuim is that they do not show cellular levels of minerals. This is true for magnesium also. You can have normal blood serum levels because the body has a strong desire to keep calcium, sodium, potassium and magnesium level balanced to maintain proper PH levels in the blood. Too acid or alkaline results in death. To do that, it will pull it from the tissues/bones if it needs more, or will dump it into the urine to get of too much. This is most apparent in post-menapausal women with osteopenia/osteoporosis. Their blood serum minerals are normal but they have bone loss anyway. Maintaining homestasis in the body is very complex and well beyond my ability to fully understand it. I guess I'm kind like you in that I would want to push to understand why Emily has bone pain and a fracture. Hopefully, it will all resolve on its own like they said.

Hopefully you were able to get copies of latest labs for your records. Sometimes, having in them in hand can give you some insights to what other questions to ask especially if any results are borderline. And allows you to look at trends over time. What's changed since the last labs.

Marlene