Comments for Coping With Crohn's http://www.coping-with-crohns.com Thu, 02 Feb 2012 16:11:28 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Muscle / Joint Pain – Remicade Related? by Jen http://www.coping-with-crohns.com/80/muscle-joint-pain-remicade-related/comment-page-2/#comment-2669 Jen Thu, 02 Feb 2012 16:11:28 +0000 http://www.coping-with-crohns.com/?p=80#comment-2669 My 13 year old daughter has Crohns. She was diagnosed a year and a half ago after 2 years of testing. It's been such a rough road for her. She has been on 6-MP since October 2010. In November her GI Dr said it wasn't working anymore after she was having a bad flare that put her in the hospital. We started Remicade and kept her on the 6-MP also. He added prednisone too. She has been off prednisone since Christmas and stopped the 6-MP yesterday but she has been missing a lot of school due to joint pain. It started in her back but is all over now. She said she feels like an "old lady" and cries all the time because she hurts so much. The GI Dr ordered Elivil to hopefully help with the back pain but it is going to take at least a few weeks to see if it's going to work. I wonder if something else could be going on. Is it from the Remicade or could she have RA? Is it due to Crohn's? I am losing sleep over this, I'm so worried about her and it's tearing me up to see her in pain! I wish it was me instead of her! Any suggestions on what it could be or has anyone else had these issues? For all of you that have any fort of IBD, you are in my prayers, it's a horrible disease. My 9 year old is starting the resting process at the end of the month to see if she has Crohn's as well because she's having issues also. I pray for a cure!! Thanks to all who take the time to read this and respond. Any advice will be helpful! My 13 year old daughter has Crohns. She was diagnosed a year and a half ago after 2 years of testing. It’s been such a rough road for her. She has been on 6-MP since October 2010. In November her GI Dr said it wasn’t working anymore after she was having a bad flare that put her in the hospital. We started Remicade and kept her on the 6-MP also. He added prednisone too. She has been off prednisone since Christmas and stopped the 6-MP yesterday but she has been missing a lot of school due to joint pain. It started in her back but is all over now. She said she feels like an “old lady” and cries all the time because she hurts so much. The GI Dr ordered Elivil to hopefully help with the back pain but it is going to take at least a few weeks to see if it’s going to work. I wonder if something else could be going on. Is it from the Remicade or could she have RA? Is it due to Crohn’s? I am losing sleep over this, I’m so worried about her and it’s tearing me up to see her in pain! I wish it was me instead of her! Any suggestions on what it could be or has anyone else had these issues? For all of you that have any fort of IBD, you are in my prayers, it’s a horrible disease. My 9 year old is starting the resting process at the end of the month to see if she has Crohn’s as well because she’s having issues also. I pray for a cure!! Thanks to all who take the time to read this and respond. Any advice will be helpful!

]]> Comment on Muscle / Joint Pain – Remicade Related? by Lynn http://www.coping-with-crohns.com/80/muscle-joint-pain-remicade-related/comment-page-2/#comment-2637 Lynn Sun, 22 Jan 2012 06:58:05 +0000 http://www.coping-with-crohns.com/?p=80#comment-2637 Hi Malaise, The gastro said no more remicade, sent me for bloodwork (all negative), chest X-ray, and to a Rheumy. Both Dr.'s said the remicade would be out of my body by the next (cancelled) infusion date-Feb. 11. Rheumy did more bloodwork and I go back in two weeks. Every joint she examined was either tender or painful to some extent. She says it could be RA (doubt it because the test was negative), medication induced Lupus, or just from the Colitis. We will see what the bloodwork shows when I go back but I suspect nothing- the Lupus test came back negative too when the Gastro tested for it. I have not tried Humira, and am not very anxious to try any more bioligics with side effects. My insurance doesn't cover Humira either, although maybe that could be overridden. The copay would then most likely not be affordable though. Waiting to see what happens with Colitis, (could be brewing-not sure), the Rheumy's bloodwork, and joint pains when the remicade is out of my body. I know they may take a while to go away. I will keep you posted. Did find out I am NOT in perimenapause yet through GYN's bloodwork. (Yay!) Hi Malaise,
The gastro said no more remicade, sent me for bloodwork (all negative), chest X-ray, and to a Rheumy. Both Dr.’s said the remicade would be out of my body by the next (cancelled) infusion date-Feb. 11. Rheumy did more bloodwork and I go back in two weeks. Every joint she examined was either tender or painful to some extent. She says it could be RA (doubt it because the test was negative), medication induced Lupus, or just from the Colitis. We will see what the bloodwork shows when I go back but I suspect nothing- the Lupus test came back negative too when the Gastro tested for it. I have not tried Humira, and am not very anxious to try any more bioligics with side effects. My insurance doesn’t cover Humira either, although maybe that could be overridden. The copay would then most likely not be affordable though. Waiting to see what happens with Colitis, (could be brewing-not sure), the Rheumy’s bloodwork, and joint pains when the remicade is out of my body. I know they may take a while to go away. I will keep you posted. Did find out I am NOT in perimenapause yet through GYN’s bloodwork. (Yay!)

]]> Comment on Muscle / Joint Pain – Remicade Related? by Dayna http://www.coping-with-crohns.com/80/muscle-joint-pain-remicade-related/comment-page-2/#comment-2628 Dayna Thu, 19 Jan 2012 03:22:24 +0000 http://www.coping-with-crohns.com/?p=80#comment-2628 I've been on Remicade since August of 2010 for Crohn's and have been *miserable* with sore joints recently. I've always had bad pain in my knees from old sports injuries, but I feel like I have arthritis... Sore all the time, difficulty changing positions from sitting to standing, climbing stairs, and I work in a daycare, so chasing four-year-olds around the playground in the cold certainly doesn't help. My doctor always says "we'll keep an eye on it" and drops it. Does anyone have ideas on how to help the stiffness and pain? I’ve been on Remicade since August of 2010 for Crohn’s and have been *miserable* with sore joints recently. I’ve always had bad pain in my knees from old sports injuries, but I feel like I have arthritis… Sore all the time, difficulty changing positions from sitting to standing, climbing stairs, and I work in a daycare, so chasing four-year-olds around the playground in the cold certainly doesn’t help. My doctor always says “we’ll keep an eye on it” and drops it. Does anyone have ideas on how to help the stiffness and pain?

]]> Comment on From Remicade to Humira by Tom http://www.coping-with-crohns.com/85/from-remicade-to-humira/comment-page-1/#comment-2587 Tom Tue, 10 Jan 2012 16:50:43 +0000 http://www.coping-with-crohns.com/?p=85#comment-2587 I have UC since 2001. Prednisone did not work for me. Not to mention the side effects. I have been on Remacide for a long time and have bad muscle and joint pain. Lupus like sydrome. The doctor mentioned to try Humira. So that's the coarse for me now. I hope I can work and live without the pain. I almost feel crippled. Along with depression and feeling 90 years old. Hope that all changes. I have UC since 2001. Prednisone did not work for me. Not to mention the side effects. I have been on Remacide for a long time and have bad muscle and joint pain. Lupus like sydrome.

The doctor mentioned to try Humira. So that’s the coarse for me now. I hope I can work and live without the pain. I almost feel crippled. Along with depression and feeling 90 years old. Hope that all changes.

]]> Comment on Muscle / Joint Pain – Remicade Related? by madaise http://www.coping-with-crohns.com/80/muscle-joint-pain-remicade-related/comment-page-2/#comment-2574 madaise Mon, 09 Jan 2012 02:43:19 +0000 http://www.coping-with-crohns.com/?p=80#comment-2574 Dede - as for medical marijuana.. I have tried it a couple times, but I don't deal with the high very well... I made herb butter <grins) a few months ago, but it stinks terrible and I've been reluctant to try it. I hear using it in a recipe, like to use in place of butter in a cookie recipe, or brownie recipe or fudge is the way to go.. and I did buy the stuff to make rice crispy treats, but as yet, I haven't done it. My understanding is the high from it is different than smoking it, so I may tolerate it better. Have you tried it yet? Would like to hear your findings. ;) Dede – as for medical marijuana.. I have tried it a couple times, but I don’t deal with the high very well… I made herb butter <grins) a few months ago, but it stinks terrible and I've been reluctant to try it. I hear using it in a recipe, like to use in place of butter in a cookie recipe, or brownie recipe or fudge is the way to go.. and I did buy the stuff to make rice crispy treats, but as yet, I haven't done it. My understanding is the high from it is different than smoking it, so I may tolerate it better. Have you tried it yet? Would like to hear your findings. ;)

]]> Comment on Muscle / Joint Pain – Remicade Related? by madaise http://www.coping-with-crohns.com/80/muscle-joint-pain-remicade-related/comment-page-2/#comment-2573 madaise Mon, 09 Jan 2012 02:39:09 +0000 http://www.coping-with-crohns.com/?p=80#comment-2573 Lynn.. so sorry to hear your issues with remicade. I will say that if and when you go off remicade, if it's an allergic reaction you are having, it will likely take a few to several months before you start feeling "normal" (I use that loosely) again. Have you tried Humira yet? I did that for a year or so, and that at least got my crohn's into remission. I quit taking it when I realized my periods had gone wonky and I linked it to humira. Now, I'm thinking it might just be peri-menopause. Oh joy. But I've been off humira well over year and still doing ok. Not great, not like pre-crohns, but better than I when I was diagnosed. Good luck with your appointment. Lynn.. so sorry to hear your issues with remicade. I will say that if and when you go off remicade, if it’s an allergic reaction you are having, it will likely take a few to several months before you start feeling “normal” (I use that loosely) again.

Have you tried Humira yet? I did that for a year or so, and that at least got my crohn’s into remission. I quit taking it when I realized my periods had gone wonky and I linked it to humira. Now, I’m thinking it might just be peri-menopause. Oh joy. But I’ve been off humira well over year and still doing ok. Not great, not like pre-crohns, but better than I when I was diagnosed.

Good luck with your appointment.

]]> Comment on Muscle / Joint Pain – Remicade Related? by Lynn http://www.coping-with-crohns.com/80/muscle-joint-pain-remicade-related/comment-page-2/#comment-2570 Lynn Sun, 08 Jan 2012 23:56:45 +0000 http://www.coping-with-crohns.com/?p=80#comment-2570 Started Remicade in fall 2011. Have had UC since I was 18 and I am 42 now. Joint pain since starting Remicade. I have had 3 treatments. Seeing Gastro tomorrow. I feel older and stiffer by the day and am having night sweats. I felt the joint pain from the beginning, but the Gastro said it was due to stopping the prednisone. I doubt that now. I have migrating joint pain too--neck, shoulders, elbows, wrists, fingers, hips, KNEES, ankles, feet, toes. I plan to ask for a test to see if I am building up antibodies, a test for RA and Lupus, and a test for Leukemia (night sweats which have gotten to be a big problem in just the last few weeks-getting worse.) I am considering not continuing with the Remicade. It is better than the prednisone that made me gain 20 pounds, but this medication makes my body feel stiff and ancient. I periodically had joint pain over the years associated with flares, but nothing that made me feel stiff like this, and now feel the pain in joints that I never did before. There is no swelling, where the joint pain in the past due to colitis came with swelling in the hands and feet, around the painful joints. As I type this, It seems ridiculous not to go off this stuff--but afraid of the side effects of other things. Don't want prednisone and had the MP-6 induced fever so that is out. Started Remicade in fall 2011. Have had UC since I was 18 and I am 42 now. Joint pain since starting Remicade. I have had 3 treatments. Seeing Gastro tomorrow. I feel older and stiffer by the day and am having night sweats. I felt the joint pain from the beginning, but the Gastro said it was due to stopping the prednisone. I doubt that now. I have migrating joint pain too–neck, shoulders, elbows, wrists, fingers, hips, KNEES, ankles, feet, toes. I plan to ask for a test to see if I am building up antibodies, a test for RA and Lupus, and a test for Leukemia (night sweats which have gotten to be a big problem in just the last few weeks-getting worse.) I am considering not continuing with the Remicade. It is better than the prednisone that made me gain 20 pounds, but this medication makes my body feel stiff and ancient. I periodically had joint pain over the years associated with flares, but nothing that made me feel stiff like this, and now feel the pain in joints that I never did before. There is no swelling, where the joint pain in the past due to colitis came with swelling in the hands and feet, around the painful joints. As I type this, It seems ridiculous not to go off this stuff–but afraid of the side effects of other things. Don’t want prednisone and had the MP-6 induced fever so that is out.

]]> Comment on Muscle / Joint Pain – Remicade Related? by Dede http://www.coping-with-crohns.com/80/muscle-joint-pain-remicade-related/comment-page-2/#comment-2380 Dede Sat, 10 Dec 2011 17:08:15 +0000 http://www.coping-with-crohns.com/?p=80#comment-2380 I have also tried diet, like Specific Carbohydrate Diet which was helpful when having a bad episode of Diarrhea and Acute Crohn's but did not work so well on joint stuff when in remission. Have also been tested for Celiac multiple times. but will look into diet suggestions. Has anyone tried medical marijuana? Just becoming legal in my state?(NJ) I have also tried diet, like Specific Carbohydrate Diet which was helpful when having a bad episode of Diarrhea and Acute Crohn’s but did not work so well on joint stuff when in remission. Have also been tested for Celiac multiple times. but will look into diet suggestions. Has anyone tried medical marijuana? Just becoming legal in my state?(NJ)

]]> Comment on Muscle / Joint Pain – Remicade Related? by Dede http://www.coping-with-crohns.com/80/muscle-joint-pain-remicade-related/comment-page-2/#comment-2379 Dede Sat, 10 Dec 2011 17:02:57 +0000 http://www.coping-with-crohns.com/?p=80#comment-2379 I have been diagnosed with Crohn's for about 6 years. Before that I was told it was Ulcerative Colitis. My periods of remission are from the diarrhea and abdomenal pain, but even with out these symptoms I have really debilitating fatigue and joint pains, tendinitis and muscle spasms. I have never taken Humira or Remicade. I am told my Crohn's is not that severe. But the joint and muscle problems are severe at times and no one wants to treat them, No NSAIDs, pain Rx doesn't help and muscle relaxers don't. Prednisone helped after I was hospitalized for acute inflammation, but makes me kind of crazy. Hypomanic and very busy. But pleasant. Been to 3 Gastros and 4 Rheumatologists...They all just day it's Crohn's related. I have tried Chiropractic, Accupuncture etc. which help somewhat? Any suggestions. I have had a ton of bloodwork and Bone scan and xrays? No answers yet. I have been diagnosed with Crohn’s for about 6 years. Before that I was told it was Ulcerative Colitis. My periods of remission are from the diarrhea and abdomenal pain, but even with out these symptoms I have really debilitating fatigue and joint pains, tendinitis and muscle spasms. I have never taken Humira or Remicade. I am told my Crohn’s is not that severe. But the joint and muscle problems are severe at times and no one wants to treat them, No NSAIDs, pain Rx doesn’t help and muscle relaxers don’t. Prednisone helped after I was hospitalized for acute inflammation, but makes me kind of crazy. Hypomanic and very busy. But pleasant. Been to 3 Gastros and 4 Rheumatologists…They all just day it’s Crohn’s related. I have tried Chiropractic, Accupuncture etc. which help somewhat? Any suggestions. I have had a ton of bloodwork and Bone scan and xrays? No answers yet.

]]> Comment on Pain Management by madaise http://www.coping-with-crohns.com/8/pain-management/comment-page-2/#comment-2368 madaise Fri, 09 Dec 2011 16:27:23 +0000 http://www.coping-with-crohns.com/?p=8#comment-2368 Have to chuckle - I just made a pot of herb butter, in hopes trying that direction. I'm not, and never have been a cannibis smoker - I just can't handle the high... but now I've got this really nasty smelling butter (I'm told this is normal *winks*) and I haven't made anything with it. Thinking fudge. On that note though, I'm curious how things are going to play out with medical marijuana... I'm expecting to see more states fall into line with it, but then I hear the president is taking steps to put the brakes on states who have already. Have to chuckle – I just made a pot of herb butter, in hopes trying that direction. I’m not, and never have been a cannibis smoker – I just can’t handle the high… but now I’ve got this really nasty smelling butter (I’m told this is normal *winks*) and I haven’t made anything with it. Thinking fudge. On that note though, I’m curious how things are going to play out with medical marijuana… I’m expecting to see more states fall into line with it, but then I hear the president is taking steps to put the brakes on states who have already.

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