Bone marrow edema from prednisone!

I have recently found out that I have bone marrow edema or necrosis in both my shin bones because of all the prednisone I have taken over the years. I also have a mass under my right knee that is in the bone as well. Has anyone else had a problem similar to this and if so what was your treatment options. I have to go see a bone oncologist out of state next month. My legs hurt so bad, but I am in a flare and the only thing keeping the blood away is prednisone. I am in the bathroom 15-20 times a day and vomiting. My GI won't see me because it will cost $70 that I do not have. The ER just tells me to see my GI. Sorry for the vent but I am so frustrated as what to do about all this. Also any tips on how to stop the pooping. Anti-D meds don't work not even the prescription strength.

I've never heard of that before! I'm sorry that you are having this problem. It can be so frustrating getting someone to listen and take care of you! I hope you get some good answers from the oncologist you are going to go see.

My SIL has this. She has lupus and was on a lot of steroids over the years and she said it literally destroyed her body. She has had many surgeries already for the weakend bones she has due to the prednisone. I believe that surgery is the only way to fix it, but only if it is causing you issues. Like for my SIL, she still has to have a knee surgery also for the same reason. She has a lot of pain in the knee due to the growths and weakend bones. She said she cannot take ANY steroids ever again.

As far as the diarreha, is your GI treating you with any meds for it besides prednisone? You could maybe try a fiber to see if it would bulk things up, but I would ask your GI first about it and see what he says. I wonder if they would give you zofran. It is a med that helps with nausea and vomiting and it also has the side effect of constipation. Not sure how much it costs though.

Sorry you are suffering, I really hope you can get the help you need soon. Big Hugs to you!

Earnellzwifey said:

I have recently found out that I have bone marrow edema or necrosis in both my shin bones because of all the prednisone I have taken over the years. I also have a mass under my right knee that is in the bone as well. Has anyone else had a problem similar to this and if so what was your treatment options. I have to go see a bone oncologist out of state next month. My legs hurt so bad, but I am in a flare and the only thing keeping the blood away is prednisone. I am in the bathroom 15-20 times a day and vomiting. My GI won't see me because it will cost $70 that I do not have. The ER just tells me to see my GI. Sorry for the vent but I am so frustrated as what to do about all this. Also any tips on how to stop the pooping. Anti-D meds don't work not even the prescription strength.

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oops, just seen that you are already taking zofran. Hmm, how about that drug questran that they give to people who have had galbladder issues? This is really suppose to bind up the stool. It is just a thought to ask your GI doc.

Thanks for the replies. @ihurt I have tried questran and it makes me vomit. I am taking lomotil and librax but it does not help. The only time I slow down some is when I take narcotic pain meds for a few days. They have a side effect if constipation also. My Behcet's dr did up my remicade infusions to every 6 weeks instead of every 8 hope that helps some.

Do you think your doctor would be willing to give you like tylenol with codiene. That is pretty constipating for me. I mean it is a narcotic, but not like one of the bigger ones. What are you able to eat? I am sure you are eating very bland as it is right? I mean white rice seems to be one that helps bind things up for some people. Your doctor should be helping you, I mean it frustrates me to no end that doctors will just stand by and allow their patients to suffer. It is not right.

How are you healing after the hysterectomy? I just found out I have uterine fibroids. I am having issues with them and have to get checked out. I am a bit scared they will tell me I may have to get a hysterectomy. Was the recovery from it hard?

Can they try you on one of the meds like hycosamine? This is suppose to slow the bowels too.

Earnellzwifey said:

Thanks for the replies. @ihurt I have tried questran and it makes me vomit. I am taking lomotil and librax but it does not help. The only time I slow down some is when I take narcotic pain meds for a few days. They have a side effect if constipation also. My Behcet's dr did up my remicade infusions to every 6 weeks instead of every 8 hope that helps some.

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I am recovering slowly but surly. I do not regret the decision at all. I was basically hemorrhaging each month. Plus the pain was horrible. I would have to wear super heavy overnight pads and a super plus tampon, and I would go through them every hour.

I am on lortab 10 right now, I stay in so much pain all over. This is mostly from my Behcet's though. My GI thinks that most of my intestinal issues are more from the Behcet's than from my CD so he is not willing to put on much to help. He is leaving it up to my rheumy, who is going Ito retirement. So right now I basically only have my GP to help me. Ugh it is so frustrating, there is not another rheumy near me that knows how to treat Behcet's so I am basically just slipping through the cracks.

Oh man, that sucks. Maybe you can ask your rheumy doc who he would reccomend you see since he is retiring. I mean you need someone to watch over you with the Behcet's.

I am so sorry you are in pain all over. I also have A lot of pain as well. I get severe muscle pains all over and the bladder pain and the intestinal pain and now gyne pain, I mean geez, enough is enough.

Ughh, I dont blame you for having the hysterectomy with all the bleeding, that had to be God awful. Only a woman could understand that. I am glad you are feeling better in terms of the hyterectomy though, that is good. At least you wont be losing all that blood anymore. Do you think your UTI's were a result of the fibroids? I know you mentioned that you had to self cath, was it because you could not empty your bladder? I know cathing can cause UTI's in itself. I had to self cath and inject medicine into my bladder when my IC(interstitial cystitis) was at it's worst. I know I got some nasty UTI's just from the cathing process.

IS there No other doctors in your area?? Man, it seems like it is so hard to get good medical care these days. There just are no good doctors out there is seems and if there is, they all are far away!

I hope you get some pain relief soon...

Earnellzwifey said:

I am recovering slowly but surly. I do not regret the decision at all. I was basically hemorrhaging each month. Plus the pain was horrible. I would have to wear super heavy overnight pads and a super plus tampon, and I would go through them every hour.

I am on lortab 10 right now, I stay in so much pain all over. This is mostly from my Behcet's though. My GI thinks that most of my intestinal issues are more from the Behcet's than from my CD so he is not willing to put on much to help. He is leaving it up to my rheumy, who is going Ito retirement. So right now I basically only have my GP to help me. Ugh it is so frustrating, there is not another rheumy near me that knows how to treat Behcet's so I am basically just slipping through the cracks.

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Sorry for the late reply. I have been sick yet again. I do have to Cath because my bladder does not empty all the way. I have not cathed since the hyster, but I am infection free so I am not to worried about it.

Your Dr will have someone he "sold" his practice to or... you can choose a new Dr. At no time should you be left without medical care for that specialty.

THE ER can not turn out away, they have to treat you, even to the point of calling in a specialist for a consult. Don't take no for an answer

Lauren

Thanks Lauren, I have searched and searched but have not been able to find another dr in the state Mississippi that knows how to treat Behcet's. when I do go to the Er or any of my other dr's I have bring a print out of what Behcet's is. So far it looks like I am going to be stuck with having to go to Memphis or Alabama to get treated. I just hate to travel because of all the bathroom breaks.