Discussions that mention prednisone

Bone Disorders board


Hello,
I'm new to this site but glad to find all the company! I will share this with my 14-year-old daughter who was diagnosed with CRMO in January 2007 after three years of bone pain in one area or another... all misdiagnosed. She has 9-10 involved hot-spots but her most painful areas are in her tibia and thoracic vertebra. She suffered a compression fracture in her T6 vertebra after a bike accident which has healed but is still inflamed. Her doctor believes that the lesions on that vertebra weakened the bone which led to the fracture. Good detective work by her back doctor and consultation with a doctor at Stanford led to a biopsy and eventual CRMO diagnosis.
She is now being treated by a rheumatologist and is taking Colchicine and Naprosyn. Colchicine is supposed to be good for gout but is used by the rheumatologists at Stanford for CRMO as it is considered safe drug to start with. I was wondering if there is anyone out there using colchicine and if so, what success they are having.

There was a period of time last May when her entire body seemed to be in a state of inflammation. All of her hot spots would hurt at once and she had difficulty even moving about the house. This initiated our first visit to a rheum. who started her on a course of Prednisone. The results were astonishing and within 6 hours (that's no joke), she was completely out of any pain. The following few weeks, I saw a kid I hadn't seen in years. She was energetic, eager to participate in anything, and happy. But she could not stay on the Pred. due to long term effects and moved to the colchicine/naprosyn combo she is now on. The pain is back but not in as many places but now her stomach is a mess. To deal with that, we've experimented with Prilosec and Zantac with not much improvement.

The jury is out for us as to whether to push for different drugs, use no drugs, or stay the course with these. She absolutely fears the thought of life without drugs because on days she forgets, she feels awful. We know that the drugs she is on now reduce the pain somewhat but don't eliminate it.
I have read the many threads that suggest the different drugs used so far. I'd like to hear from are the parents who have had success with certain treatments, what worked for them, what didn't. I'm also curious about surgical procedures because these were not even considered an option by her orthopedist, and he is one of the few doctors around here who treat these patients.

My daughter and I would also love to hear from kids as well! Our kids need a mediated forum like this. Chronic pain can be lonely and is so often misunderstood. These kids also give off a lot of non-verbal cues expressing their pain but which are interpreted by others as disinterest, boredom, or anger. I've had to explain to some of her teachers that they need to consider that she may be having a bad day, and not assume that she doesn't care about what is going on in the classroom. I just think these kids need each other to talk to.

Hope to hear more from you all in the coming months!
My son has tried prednisone and many other pain meds. He was also on Enbrel and it seemed to work at first but not very well. We seen Dr. Polly Ferguson at the University of Iowa. We live in Florida but it was well worth the trip. She suggested pomidranate and methotrxate. She also suggested trying remicade and methotrexate first since my son also has crohn's disease. He is now on remicade and methotrexate with Gabbepentin because he got neuropathy in his legs and was in a wheelchair for awhile. He is having good luck so far! Praise God, he only has a little break through pain every week. Now we are dealing with my daughter going through the same thing.
Hello All,
I haven't popped into this thread for a while and I'm so glad that we're all communicating. My 14-year-old daughter's last bone scans (Dec. 2006) showed lesions in seven places distributed throughout her body. Two were biopsied in January 2007 confirming the CRMO diagnosis.
She has been on 1000mg of naprosyn/day since May of 2007 and to protect her stomach, she takes omeprazole 20mg, nightly. This reduces her stomach acids and seems to help. She can't imagine life without pain-relief, so NOT taking something is a scary prospect for her and she says she feels a big difference on the days she forgets her naprosyn.

In May of 2007, while on naprosyn, she flared up and could hardly move about the house. Prednisone was prescribed by the rheumatologists at Stanford and she VERY quickly became symptom free (to our shock). Because she has a compression fracture of one of her vertebra (CRMO weakened it), she won't be taking the prednisone again unless absolutely necessary. The doctors don't want her to risk osteoporosis in the future given her back problems already.

Weaned off the prednisone by August, she moved to colchicine, a drug that has had some success with CRMO patients. In her case, it gave her stomach problems. After discontinuing that in January of 2008, her stomach problems disappeared. Meanwhile, her pain was still present.
We moved to sulfasalazine in February, only to find out that she is very likely allergic to sulfa drugs (as well as penicillin). In March, it was methotrexate 20mg, oral with the requisite folic acid supplements. She felt like it did nothing and her pain seemed to be getting the best of her. The fourth week, we switched to methotrexate injections and continued for another three weeks. Again, she felt like she wasn't getting results. Last week she began Enbrel injections twice weekly. If it works, we'll take her off the naprosyn.

My instincts tell me that we should give the methotrexate a little more time. While she says it did nothing, I noticed less complaining about pain, particularly in the mornings and evenings when she seems to feel her worst. But we'll work with the Enbrel for the time being; partly because it's what she wants to do.

She does'nt feel like she can run (lesion in tibia) or swim (lesion in upper arm) and is angry about what she misses out on. She's taking the big drugs in the arsenal in the hopes of remission, and a chance to swim and play soccer again. Her team misses her!

What I notice:
Pain is greater in mornings and evenings.
Minor illnesses, bug bites, seem to make her flare up. Strangely, as a child she was and is rarely sick--probably due to that overactive immune system.
Stress--well, she feels stress as a result of her hurting. I'm not sure that stress actually causes her to flare up but I'll pay attention.

Looking forward to hearing from you.

You've all brought up some great points. What I think we're all interested in is what works for CRMO? Her rheums tell us that this is an art and that we'll keep trying until she is happy. No sports now, but we're not giving up.
Karen
My daughter had stomach troubles while on naprosyn until we changed to Prilosec. You might also consider taking her to an allergist to see if she's allergic or intolerant of certain foods. My daughter can't have foods with sulfa (dried fruits and such) and can't have dairy products with some of the medications she's tried or she gets nauseous and completely loses her appetite.
As for the big meds (prednisone, Enbrel, methotrexate, etc.), I agree you have to be careful. Prednisone can be effective VERY quickly if given in pulses by calming down the immune system so that her bones get a well-needed break. We use it as a tool when all else fails and she's absolutely miserable-- but we are also very judicious when we use it. Her rheumatologists believe that as long as we're not using large doses for long term, she'll be fine. Docs give it for poison oak out here all of the time and the usage model (dosage, length of time) is pretty much the same for the CRMO kids. Sometimes it even knocks these kids into remission. The docs warned us that "dribbling" the medication (too low of a dose at first) isn't nearly as effective as starting out with a high dose for a few days then weaning them off of it.
Sometimes these kids just need a break when things get to be too much and we parents have to decide when that is. After trying so many approaches over the years, with little success, she was beginning to feel hopeless and angry. It manifested itself in a variety of ways. She's on Enbrel now and for the first time in three years, she feels good. It is remarkable to see the change in her attitide. We are worried about the long term effects but we are also worried about the long term effects of chronic pain. In the end, we have to make a choice between a bunch of bad choices.

As for yoga, etc., there are incredible tools out there that help people deal with pain. Yoga and meditation can be very effective but you've got a six-year-old and meditation takes a lot of training and kind of patience that she might not be capable of yet. It certainly couldn't hurt.
Also, I've heard good things about fish-oil supplements but haven't tried them yet.
We're hoping for the best for you and your family. Good luck and we'd look forward to hearing what works and doesn't work for your child.