TheITIS Thanks for taking the time to make these posts, which I just found. I have found them very helpful, as I am just about 4 weeks past my fourth infusion. I think, in a way I am getting better...
Contentprof and Mrs Brady Haven't heard from you in so long. Sorry to hear you are not doing too well. I think I posted last winter that I started I bad flare, confirmed by a sigmoidoscopy in...
aim928 I have not had an episode of cellulitis since I got off remicade. But last week (six months off remicade) I woke up to sudden swelling of feet, ankles, lower calfs. They were turning red,...
Mrs. Brady: Have not heard from you for awhile and was wondering how you are doing and what you have decided to do. I am now 6 months off remicade and on 30 mg prednisone which is not working too...
Gary Congratulations and good for you. It was a pleasure communicating with you on a few occasions and I found your insight quite useful. Glad to hear you are getting on with your life. Good luck to...
Mrs Brady: I absolutely love the new GI doc. Was just thinking of seeing him for a consult, but decided I am switching to him for my total care. I will share some of the very very interesting things...
Mrs Brady I hear you loud and clear. After all I have been through with my GI group, she now informed me through her nurse via telephone that she wants me to go on simponi as soon as we can get...
Mrs. Brady & ContentProf: Thanks for your support and well wishes. The thing that scares me so much is how fast the uc worsened so quickly (assuming the prior colonoscopy which was only about 14...
Mrs. Brady: Got the Pathology Report back and it was really really bad, but fortunately no evidence of dysplasia yet. There was even active UC in areas where the doc thought things were clear based...
Mrs. Brady Thank you so so much for your long reply. Story sounds so familiar, just a different drug(s). My pains have subsided quite a bit. I still have arthritis, but it is very manageable. I am...
Mrs. Brady I would really appreciate it if you would share a little more information on your experience with DILE and LIALDA. I just got off Remicade and 6mp due to the severe pains they caused and...
Remicade Pain Update Have not posted in awhile, but thought you might be interested contentprof. Last remicade infusion was Oct. Last 6mp pill was December 23. Once I stopped them both, the pains...
Happychick I feel so bad for you. What you have described is exactly what I am now experiencing. The blood mixed on outside of small formed stool for a few weeks now. I too thought it was just...
Contentp: I had the hep series of shots before remicade. Had prevnar during remicade (it is not live), hope to have the shingles vaccine asap. Did you have the Tb test ? I think there might be...
Hi Contp. Thanks for asking. Just got latest bloodwork (LFT's) after stopping 6mp completely and being off remicade since October. LFT's are almost back to normal. Liver doc says one more monthly...
GI referral may be the right thing. I had similar pain. It happened on and off for quite awhile. Then one night It was so bad, I went to the ER thinking I was having a heart attack. Blood test showed...
ContentprofThanks for keeping us updated on your progress post remicade. 6 mos with no flare is wonderful. I am now temporarily off remi (skipped the Dec 5 dose) to see how things progresss and off...
You should inquire about the blood tests. I was on 6mp and remicade until last Monday. At first it was every week, then every month then every three months as long as everything came back ok. Last...
Contentprof Thanks for the update. Hope you continue to do well, particularly when you get off the prednisone. I just saw my GI yesterday and she agreed to have me skip the next remicade infusion...
vdjey Sounds like the insurance company may have inadvertently done you a favor. There are so many similar (if not identical) stories on here about the joint pain caused by remicade for some people....
I have had the same exact remicade pains too. Saw a rhuemy today who said he will recommend to the GI I stop remicade. Besides the pain, the tests were showing I had Autoimune hepatitis. The rhuemy...
Just read on the Highmark (BC/BS) site that in the future they will be approving home infusions for various diseases such ad cancer, anemia, crohns. It does not specifically mention UC, but I assume...
ContentprofThanks for the update and all the info you have shared over the last few months. If not for you and thoreau, I probably would not have pursued the pain and weakness as far as I have. Glad...
Judy2 Thanks for the reference. It was very informative. Also found a good article on the new thinking on fibromyalgia. Contentprof Thanks for the support. I was thinking of you and Thoreau when I...
Gary, Soy and Kaz Thanks for your replies and reading my rant. I guess this is not a widespread remicade/UC problem afterall. Since liver problems, joint and muscle pain and edema are listed as side...
More potentially bad news!!! Just got blood test results which would apear to show I have AIH (autoimmune hepatitis type 1) in addition to UC. Positive ANA and high Actin (smooth muscle) AB (IGG)....
My insurance (blue cross) paid for the tests of my levels. The nurses at the hospital must have run into a number of cases where insurance did not pay, because they checked with my gi before they...
Quincy Thanks for your reply. They gave me a script for ten days of antibiotics when I left the hospital. There are patches that are still quite red, blotchy and painful. And my foot and ankle are...
Thanks all for sharing your stories. At least now I don't feel as if I exaggerated the pain or overreacted. I will try some more vitamin D and really keep an eye on it for any evidence it spreads to...
Just got home from the hospital after 4 days of IV antibiotics for cellulitis. It is really scary how fast it spread - from what looked like a bug bite at 5:30 pm, to about 1/4 of calf by 10:00 pm to...
Mr T. Sorry you are still having the pains now that much of the stress is going away from your life. Also, sorry to hear you are getting nowhere with the drs. Fortunately my new GI doc ordered a...
KatmomWishing you and your daughter the best. Getting off all these drugs and away from all the sickness will surely be welcome. Being so young, she has such a very good chance of a full recovery and...
soy Thanks for the note of encouragement. Any improvement in the hand, knee, neck, shoulder, ankle, feet pains would be wonderful. A brief reprieve from the constipation, hemmies, sore butt, nausea,...
Conent prof I did read your other threads very closely. I would be interested in a complete list of tests, just in case I missed one. I did have the Prometheus test and TPMT (?) back in December and...
Thoreau No I have not tried simponi of humira and I thought cimzia was only approved for crohns. GI doc said I was better off of remicade as it is weight based and I am overweight....
THOREAUThe ct scan was for the renal cell carcinoma I had - removed part of my kidney 2 years ago. Its funny that they found the kidney cancer on an MRI I had done for the UC. It will show...
Pink1 Wish you the best with entyvio. I imagine someday I will end up on it too. Doc wants to try at least this last remi infusion before making any changes. She prefers I stay on remi as it is...
UC8 I have the same problem. Had it before I was diagnosed with UC at times and ever since being diagnosed regardless of what meds I have been on. Fortunately, I just have the nausea and do not...
Pink, From what I read, no one in the trial got the PML and the company assured the FDA Task force that the drug was not the same as the one that cuased the PML. But, my GI said she was not...
Thoreau I saw my new doc yesterday and love her - she is so knowledgeale and easy to talk to etc. Asked her about entyvio as I have the same remi pains as you. We are first going to do the Lupus...
Faith I had an absolutely wonderful female GI doc in western pa. She moved to Florida about 1 1/2 years ago. Indian River I think - somewhere on the east coast. If you would like her name, let me...
Sounds familiar. My doc who first diagnosed the UC prescribed APRISO and then did not schedule a follow up visit for 6 weeks. I knew nothing about UC at the time. He was a suburban doc who...
You may be allergic to the APRISO. I suffered through 4 months of bloody watery d and non digested food when I started on APRISO and similar meds. This stopped when I quit APRISO and started on...
Activeucer Thanks for the reply. Sorry to hear you are having such a problem. The ulcer does not usually hurt and is not purplish. I oozes and looks almost yellowish at times. Sometimes it bleeds. It...
Old Mike You (and some others on this forum) seem to be so knowledgeable and up to date on all the scientific articles. Thank you for keeping us informed, although I can barely grasp all this...
Andrina and Amy Thanks for the replies. I will discuss it with my new GI doc in August, as I have read that it could be yet another manifestation of UC or possibly LUPUS (which I am concerned about...
have not heard of any such requirement. I would call insurance and ask them. Is it possible doc is just wanting more business?...
Has anyone experienced skin ulcers - polyderma gangrenosum - from having UC, a stoma or from remicade or 6mp? If so, how are you treating them? If you got one, did you get more? I have this sore that...
contentprof Very interesting that you have developed antibodies to remi. But was it still working on the UC despite the pain? My last antibody test was in March, so I wonder if I now have developed...
Contentprof What is the positive ANA test 1:320 homogeneous? I am not familiar with that. I had the remi antibody test and it was ok, so don't count on much from that test. My first GI doc very...