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bone marrow edema
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cesarsmom posted:
Hello. I was recently diagnosed with bone marrow edema in my scaphoid and lunate bones. It is extremely painful, especially later in the day and seemed to get worse after the Doctor poked around on it. I am taking vicodin 5/500 for it 4 times a day and it?s not helping much. I?m scheduled to see a specialist next week. My PCP said the first line of treatment is usually a (cortisone, I think) shot. What I wanted to know is if anyone knows if this shot would be in the bone or the joint and if it is painful? How long it usually takes to heal and if can heal completely? If that doesn?t work, what is next? Also, is there another name for bone marrow edema besides a bone bruise, because I?m not finding a lot of info on it? I know this is a lot of questions; any help would be greatly appreciated. Thank you very much in advance. Dee
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cir1842eal responded:
Hi CesarsMom! I am sorry to hear you have bone marrow edema. I believe it is the same or quite similar to a little known and less understood condition known as transient osteoporosis. I am on my third case of transient osteoporosis and can well sympathize with your pain. No, the pain killers do not help much. Yes, it does tend to worsen throughout the day and nights can be horrific.

Now for the good news-- if it is like the transient osteoporosis I have had (I currently am suffering from it in my foot) in both hips, it is a self-limiting disease, meaning that it does resolve on its own. It takes about 2-3 months for the pain to go away and proper motion in the joint to resume. It takes 18 months-2 years for the bones themselves to recover.

Some doctors have prescribed osteoporosis medicines for their patients, including the IV ones. The patients who take the drugs report a lessening of the pain in about 8 weeks. I never took the drugs and the pain lessened in about 2 months. (About like cold medications- you get better without them in 2 weeks but with them it takes about 14 days).

Cortisone, in my humble opinion, will do nothing. I had a frozen shoulder once, which is more like bursitis, and cortisone did dull the pain, but that is within the joint, not in the bone. If your bone marrow is swelling, the pain is coming from the pressure within the bone, not from the surrounding tissue. The fluid has to get OUT, not more fluid be pumped in. I have actually read of doctors trying to remove the fluid (but again, this has had little success). I did have a bone biopsy with the first hip to confirm that it was transient osteoporosis (actually it was just to rule out bone cancer because I had had breast cancer so the diagnosis was down to transient osteoporosis or bone cancer). Since they punched a hole in the bone you would think that would have drained out the fluid and relieved the pain, but nope. So... The bad news is-- you may have to suffer through the pain. But it should resolve. Do some research on transient osteoporosis (the British actually call it bone edema I think), migratory transient osteoporosis, and regional transient osteoporosis. I have not heard of it in the wrist, but then again that is not what was affecting me.

Another little interesting factoid-- I went to a "holistic" MD when I had my second bout with the disease. He found I had a severe vitamin D deficiency and a gluten allergy (celiac disease). After recovering from the second bout of transient osteoporosis, I was gluten free for almost 2 years. At Christmas I ate some candy which contained wheat (I did not realize it at first). I ate it off and on for about a week and that was when my foot began hurting. It got worse from there, even after I quit eating the stuff. Whether it has anything to do with it or not, I do not know. But I suspect the wheat was enough to make my system begin the bone marrow swelling process. Since the medical community does not really know, your guess and mine are probably as good as anybody's.

Good luck to you and if you find some answers, please please post!!!
 
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malca responded:
I have my second bout of Regional transient or Migratory osteoporosis of the ankle. Twice misdiagnosed at a major London UK hospital. I went and had a private MRI scan that showed it and then was referred to an excellent rheumotologist I had an effusion of Pamidronate and now after 5 weeks I am 95% cured. Last time it took 8 months. I like you am doing alot of research on the subject as it is not necessary to suffer. It is important not to weight bare and bed rest. Last time I was doing painful physio and got nowhere fast. Only because they couldn't fit me in over the Christmas time I started healing. Good luck and I thoroughly recommend the effusion. The pain was insufferable.
 
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darthurs replied to cir1842eal's response:
cesarsmom, I hope you are over your ailment from 2 years ago.
cir1842eal,

TO is extremely rare and I have an active case of TO right now. I have been suffering through this since 1/2010. I feel I need to say a few things in case someone else with TO finds this post.

To get to a TO diagnosis about 30 other diseases that cause osteopenia and/or BME have to be eliminated. If you tested with low vitamin D then that would be your problem and not TO. Also, cesarsmom would not have TO because it only affects weight bearing bones (unless she's walking on her hands). Did your MD/Ortho test you for all of the possible alternative causes of osteopenia/BME? From what I gather from your post very little testing was done ("so the diagnosis was down to transient osteoporosis or bone cancer").

I also wouldn't speculate on treatment options if you don't know anything about them. Coritsone significantly reduced my joint pain and stiffness (not the bone pain...but it did help the joint pain). The cortisone is injected in the joint...not into the bone (not sure if that is what you're implying).

I apologize for sounding harsh...but TO is very rare and I don't know that it is what you have. I'm sorry you're suffering from it or anything remotely similar. I'm going through a severe attack now. I've suffered through right knee-foot-hip, left medial knee-foot-lateral knee (and soon hip). Each episode has lasted 2-4 weeks and I've been rolling through the joints one-by-one since January 2010. I had a brief intermission between right and left leg (about 12 weeks). The hip should present in time to make it a full 18 months.
 
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darthurs replied to malca's response:
Malca,

I'll share the love with you since I just replied to cir1842eal...first, I hope you're feeling better.

When I first had TO in my knee and foot I did not go to physical therapy...I did bed rest...stayed off my leg (it was misdiagnosed as a stress fracture). My leg atrophied from 24" circumference down to 12". Lying down I was unable to even lift my leg. When my hip went I was on my way to becoming an invalid. PT was key to regaining my health. When the process started to repeat itself in my left leg I continued PT all through the process...it made a huge difference. My attacks were not affected but I was able to maintain muscle tone at 18" throughout the process. PT had no affect (good or bad) on the duration of the attacks...but it did help keep me from wasting away and helped me recover to normal after after attacks ended.


I've read case studies on treating TO with bisphosphonates. I'm happy to hear you feel you were helped by it. In my case, after careful consideration with my doctor, I opted not to take bisphosphonates and pursue a conservative treatment plan. No single joint attack (in my case) has lasted longer than 4 weeks...and there were no examples of people treated with bisphosphonates that resolved faster than 4 weeks.

The painful phase is caused by bone marrow edema...which would not be affected by bisphosphonates anyway...they would only potentially alter the course of the osteopenia and demineralization that results from the BME.

Again, I hope you had no more attacks and are feeling better now.
 
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njdlb replied to darthurs's response:
Ceasersmom: I have extensive transient bone marrow edema syndrome. I have had it going on now for about 4 months. I have been the prednisone round (big dog amounts) with absolutely no success. It is not an inflamatory process. And, it does affect non weight bearing bones. Don't let anyone tell you it doesn't. It is now in my hands and elbows and shoulders along with my feet hips and back. I can not do the infusions due to my heart medicines. I have finally made an appointment at Mayo which will happen this Feburary. My Rheumy, who is well versed on Sjogren's syndrome (which I have) has told me that in his 15 years of practice and all of his schooling, he has never seen this bone marrow thing. He has put me in zombie land with heavy duty pain killers so that I might get over the depression that has come due to the pain. I am now staying home, not driing, just taking drugs until I see the doctors at Mayo. Good luck with your illness and I wish you the very best - but just know, that prednisone is for inflamation and this does not fit in that groove


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