My daughter was diagnosed with Ulcerative Colitus at age 11. She had gone through such treatments as steroids, remicade, and humara. No success with any. We have it under control with herbal treatment. She is no age 14 and has been recently diagnosed with CRMO. She has had a swelling in the same finger that has caused us to do surgery as well as in her pinky/foot area. She is now having recurring issues with the same finger. She tried advil without success and then went to Naproxin. It worked once but now it isn't. The doctors are recommending Humara......I noticed that this has not been mentioned, as well as remicade. Have any of you tried these treatments. My daughter can't take remicade due to a neg reaction she had. The other issue is that the immune system becomes suppressed and causes other illnesses.
Loading...
I am thirteen years old. I've been experiencing CRMO for eight years now. It is upseting because I can't do a lot of the things I want to do. I have to stay out of gym, and not be able to do the sports I want to. In the cold is when it acts up the most. It is in all different areas of my body. I do not like taking medicine because of all the side effects, but it is good to because it brings the inflamation down. When I do take medicine it works for at least one month and then justs stops. I've been on at least five different medications. I've been on relafin, steroids, enbrel, and others.
Loading...
Hi, I'm sixteen and I have CRMO. I have tried MANY medications and I am currently on Enbrel and methotrexate, which works fairly well to keep the pain down. I have lesions near my left knee, right shoulder, and back, but I can sometimes feel inflammation in my wrists and collarbone and hip. Prednisone worked magic on me when I had the most pain. Contact me for more information or questions.
Loading...
My daughter has had CRMO for 3 years now and she is 19 years old now. Her spots are 3 ribs in the front, 2 in the back and a spot on her spine. She lives with pain but never complains. She is on Sulfasalazine and Piroxicam (anti-inflammatories). This really takes a toll on her immune system and she catches every thing including swine flu, bronchitis and pneumoni2a within the past few months. I wish this would go away!
Loading...
Hey I have had Crmo and several other things for 14 years now and everything works for a while and then mine is so severe it justs keeps coming back, im 18 now and starting to wonder if it will ever go... I have recently been on humira ( its the injections right? )... and i found that really really really helped for a long time but then with me i reject alot of medecines so i have to stop them bt i would definatly say give that a go!!
All the best
xx
All the best
xx
Loading...
Personally, I've been on enbrel for almost 2 years now. And it's been like a miracle. I am almost never in pain, and when I am in pain, it's very weak. It is an expensive medicine, so unless your health plan covers it, it may be too expensive, but it truly is amazing.
Loading...
Hi... I'm Emily i have CRMO and I've had it since i was 11years old(now 13). At first i thought having this disease would be o k but after having it for three years its AFUL!!!! Its hard.. i feel like i dont fit in sometimes, but at the same time it could be worse so i try to do silly and risky things to get it off my mind. One minute i feel like i have CRMO other times i feel like i sholuld die! I have no one to talk to and most of the time lonely so plz plz plz reply to me!!!! :-D
EMILY
EMILY
Loading...
Emily, I know what it's like. believe me. I've commented several times on this topic, a couple as guests, and now a couple under my user name. I'm 19 and have had CRMO since I was 6. I've been through the ringer and I know what it's like. Most importantly, I know ways to cope in a safe and healthy way. Please contact me. My email is . I'd really like to help you in any way that I can.
***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
Loading...
just please put CRMO in the header. and anybody else who would like to email me, feel free to do so.
Loading...
Emily,
I have had crmo since i was 4 and im 18 now, yours im soo sure will not stay for as long as mine has as mine is a severe case ,
but i know its hard because of course i understand, but try not to let it get you down.. the more down and depressed you get the more pain comes due to stress and upset, honestly try and keep your spirits high i know at times its soo hard and you think people dont understand you or know what your going through but there are people out there like me and the others who do understand you and will be here for you if you need advice or want to talk etc...
keeep strong sweetie you can fight it ;-)
xxxx
I have had crmo since i was 4 and im 18 now, yours im soo sure will not stay for as long as mine has as mine is a severe case ,
but i know its hard because of course i understand, but try not to let it get you down.. the more down and depressed you get the more pain comes due to stress and upset, honestly try and keep your spirits high i know at times its soo hard and you think people dont understand you or know what your going through but there are people out there like me and the others who do understand you and will be here for you if you need advice or want to talk etc...
keeep strong sweetie you can fight it ;-)
xxxx
Loading...
Thanks for replying!!mine is very severe also ive been out of school and trying to relax :-) If you have any tips they would be very! very! useful...i know about the hot tubs and ice packs is there anything else???
Thanks Emily :-)
Thanks Emily :-)
Loading...
Hi! im Emily i know how you feel i missed all last year of school and had to have a teacher come to my house everyday!!! I think its hard not seeing my friends everyday and not being able to play basketball and track=etc. if you want someone to talk to my email is
Emily
***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
Emily
***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
Loading...
Hello everyone!
I am 16 years old, and i have been diagnosed with CRMO for about 2 1/2 years now. Currently i have found the most relief using an auto injector called Enbrel. This has spared me the most pain. I have been in hospital countless times, and dealt with many different doctors, and received very many biopsies, and have tried many different medications including prednisone, naproxen, steroids, and NSAIDS. I still have episodes of great pain and have found slight relief using heat pads, or relaxing in a hot bath. I am in Calgary Canada, and have received plenty support from my rheumatologist here.
Any questions ill be sure to help.
I am 16 years old, and i have been diagnosed with CRMO for about 2 1/2 years now. Currently i have found the most relief using an auto injector called Enbrel. This has spared me the most pain. I have been in hospital countless times, and dealt with many different doctors, and received very many biopsies, and have tried many different medications including prednisone, naproxen, steroids, and NSAIDS. I still have episodes of great pain and have found slight relief using heat pads, or relaxing in a hot bath. I am in Calgary Canada, and have received plenty support from my rheumatologist here.
Any questions ill be sure to help.
Loading...
My son is 3 yrs old and I am in the middle of him being diagnosed with Chrmo. He has some granuloma cells so they are testing him for Sarcoidosis but say it is unlikely because of his age. We are very scared and really not sure what we are up against. They want him to take naproxin 2 times a day but say there is a risk of kidney and liver damage. If anyone out there has more info or anything to help I would really appreciate it! Or even just someone to talk to. thank you, christina
Loading...
Christina,
I have CRMO, and was placed on prednisone. After 4 months of that, I gradually got off of the predinisone, and now am taking naproxin (500 mg) twice a day. Although it has been shown to harm the kidney and liver taking zantac will prevent the effects. However since your son is 3 I would check with your doctor to make sure this is a good thing to take. I hope this helps
-Weston
I have CRMO, and was placed on prednisone. After 4 months of that, I gradually got off of the predinisone, and now am taking naproxin (500 mg) twice a day. Although it has been shown to harm the kidney and liver taking zantac will prevent the effects. However since your son is 3 I would check with your doctor to make sure this is a good thing to take. I hope this helps
-Weston
Loading...