I also have this issue every time I am on biologics. I have stopped each one because of severe joint pain. My GI is confused because there is no medical research to back up entyvio and joint pain,...
Hi all, I went back to the Mayo last week because I have had severe body wide pain and was using a wheelchair. My local rheumy just kept pushing me off because of my refusal to use prednisone...
Yes, I have heard a similar statement from my doctor. I have been having eye issues that are getting increasingly worse. Eye doctors have said that Crohn's is causing dry eye and Blepharitis. I have...
Thank you for sharing your experience. I am also highly sensitive to medications which is why we have so many problems finding the right ones..they want me on both Lyrica and Gabapentin as well. I am...
I am happy to answer all of the questions. I have been diagnosed with Sacroilitis as well but I am not receiving relief from Humira. GI doc doesn't understand as I have also developed uveitis. They...
I use a wheelchair on my severe days and a walker on my good days..sulfasalazine is maxed out..it is seeming like pred was a good choice. Texas sounds good right now. Still interested to hear if...
I updated my signature but it didn't take. I apologize. I am on sulfasalazine. We tried again and I got some relief but this winter has been bad. The latest flare sent my joints into a tailspin. I...
I do not post often on here but want to run something by you ... Background - Dx with Crohn's in 2010, Fibro in 2011. Sacroilitis in 2012. Working with the Mayo and several local doctors because I...
my crohn's is flaring right now and this is a new symptom for me. The spasms do feel like a heart attack. Thank you for helping me out....
Wow... so I just have to push harder with my GI. The swallowing thing has been disconcerting and the choking is annoying. I feel sometimes I choke on the air I breathe. Crohn's is a peach....
I am a returning member who is in need of help. My crohn's has been all over the place since I have last been here. It has been diagnosed in my eyes as well as my joints and bowel. For the most part,...
Kathy.. this is not the first , but second time I have been offered Fentanyl but nothing else. My husband and I just looked at each other. It confuses me that they will offer me such a strong...
Could not agree more with both of you !!! I am on fourth and fifth opinions here... I have run the gamut on doctors and it is frustrating. Nobody seems to want to go out of the box. I have friends...
Hi everyone... I have cross posted this in Chronic pain. I have been here before but not for a long time. First joined Crohn's Disease forum in 2010. Long story short, I have had a difficult two...
Hi everyone... I am new to this forum. First joined Crohn's Disease forum in 2010. Long story short, I have had a difficult two years. First diagnosed with Crohn's and Crohn's arthritis at 40......
sending much love and prayers that you find relief.......
I know what you mean. My joint pain is over the top as well.. and no sleeping. They thought it might be the remicade so they put me on Humira. I just don't know anymore. Sometimes I wonder why the...
Zanne... thank you. Thank you so much. I keep pushing for pain relief but my drs act like there are just two out there. I am hoping the new rheumy will be able to help me but that is the end of...
Thank you so much!! hugs to both of you. I was surprised by he pain of the med going in. I have the pen. I wanted to ice up but since the nurse was doing it, I couldn't. I have go to them one more...
Gail, I am so sorry I am so late in posting to this. I will keep you and your family in my prayers....
Music and laughter....
I tested extremely low and have been taking 50,000 for a couple of months now. They tried to put me on a smaller maintenance dose but my levels dropped again. I have another month and once again we...
I had my first humira dose on Friday... yes after reading the posts .. I realize I am the sissy of the group but for me.. it hurt really bad. Not the injection but the meds going in. I am not sure if...
me too!! same issue... but I don't push the cart.. I either am in the wheelchair or just slowly walking but every time it happens....
Great job!!!!...
Just wanted to welcome you to this great group. I am sure someone will be able to help you out. Wishing you the best....
thanks so much everyone.. I am truly hoping the Humira does what it needs to do for my joints. hugs!!...
Thanks....I have missed all of you. I never was overly scared over the remicade after talking with you guys. I went in, got the infusion, relaxed for 5 hours and slept the rest of the day. With...
Just wanted to see how everyone is doing. I haven't been on here, just trying to go day to day. My daughter died ten years ago next friday and I just tend to stay quiet.. but all of you have been in...
yep... and as Kaz said..really not connected to my gut symptoms...nor my hormonal cycles... hugs.. hope you feel are able to get relief soon....
I had this done just a month ago. made me drink this stuff that tasted like blueberries and gave me a shot in the arm followed by an iv ...the hardest part for me because of my crohn's arthritis was...
great news Becky..hugs....
mdf.. we started about the same time then? I will talk to him tomorrow. Actually I have felt some relief.. even had a good day joint wise...so maybe ( of course) you are all right.. maybe I need...
many hugs and a speedy recovery Zanne....
This seems to be the million dollar question. Crohn's arthritis seems to me difficult to treat. For me..The orthopedic and rheumy ruled out everything from lupus, to bone necrosis , to RA... nothing...
AG- do you still have joint pain with remi ? i am so sorry to hear about the stomach issues.. that has to be uncomfortable. Lamb61- I have been tested for antibodies, and for RA and for anything else...
great job!!!!...
ok...patience. the thing I fail at most. =) thank you for your words of encouragement. As I have said before, the joint pain really gets me the most. But I will listen and be patient. I appreciate it....
I was premedicated with prednisone, dexadron, tylenol and benadryl....just reading your post made me say wow. The benadryl makes me sleep too...and love the blankets. I just wish it would work for...
I have only one good thing that happens.. my gut pain has gone away. Other than that, my joint pain has worsened...or my crohn's arthritis is getting worse. Who knows. Thank you...I am glad it is...
Definitely keep us informed. Wishing you the best of luck....
It does seem that heating pads don't last long...I agree with Nanners.. the best ones are the rice or the corn.. hugs...
My gi convinced me to give Remicade one more treatment.. he thinks I have not given it enough time. Started Oct 2010. The previous Remicade treatment had been upped to 10mg/kg. I ended up in the...
way late in this... hugs.. glad it was resolved....sorry it happened in the first place...another employee should not be able to make a change like that happen. hugs....
Being on SSDI really shocks a person...I would have never thought this would happen......
Zena, thank you.. and I am so sorry. It always helps to know you are not alone but I hate for anyone to have to go through this hell. I decided to put a call into my gi and until then, not try...
agree..this DD does seem to rob us. I am 41 and used to be so active. Now I use a cane and need my teen son and husband to help me get around. It is humbling....
isergodur, thank you for sharing that. Did the sulfasalazine relieve any of the pain or help your movement? I do understand feeling 100... hugs to you....
I have been steadily gaining weight while trying to cut calories.. I can't exercise much but its really adding up..I feel your pain .....
holding all in prayers. I saw the news this morning... sending much love and support....