Help

I've been getting remicade infusions. The last was my 4th. I've had increasing severe pain/stiffness/swelling in joints and muscles. After third infusion I noticed my hands were hurting more then after the second. I'm in severe pain now could barely get out of bed today. I've tried almost every treatment I can think of including cytoxan and high dose prednisone. Nothing has seemed to work. I'm afraid of what my options will be if I'm building antibodies. Or if I'm building antibodies or if its my Crohns flaring worse while on remicade infusions and 10mg of prednisone. Im new here so not sure if im posting this in the right place. let me know if I'm doing something wrong. Anyone have experience with joint paint and swelling w debilitating pain after starting remicade?

My last infusion was May 10th, my doctor doesn't prescribe any premeds. The infusion nurse said to take benydryl and Tylenol after my first infusion because I had reaction like fever chills headache stomach ache and nausea while getting the first infusion. So I have taken benydryl and Tylenol. I'm a little concerned and am thinking about stopping the remicade. It makes me feel like I'm living in one of those commercials you see on TV where all the side effects sound worse then the problem or something like that. I've used humira w high dose prednisone, azathioprine and high dose prednisone, cimzia w HD pred and cytoxan w high dose pred. I was diagnosed in August of 2005 but in April of 1995 (at 15yrs old) I had a large bowel resection and was told I probably swallowed a bone. I had intususeption in August of 05 that gave me the diagnosis. Peripheral neuropathy, non specific interstitial pneumoninitis-(pulmonary fibrosis) by lung biopsy in November 2007 after taking cimzia and HD pred my inflammatory markers were climbing when they should've been going down. My CRP has went down a little bit since starting remicade but my SED rate is the same. I'm just in so much pain idk what to do. I can see actual redness in my finger joints and my elbows and knees. I also am retaining water. I'm sorry for whining. I just feel so helpless and am in so much pain trying to distract myself so I don't go to the ER. I'm so tired, I have a 20 mo old son who is very active it was when I was pregnant w him I almost reached remission according to dr standards, but it was the best 8 months of my life in the past 8 years, except for the fact he tried to come at 24 weeks, but I kept him in until 36 weeks a challenge but did it :) I wonder if my Crohns could be flaring worse idk all I know is my joints hurt like nothing ever before, I hate to go to the ER so I'll try to sleep and hope tomorrow is a better day. Thank you :)

I saw my PCP yesterday, I told her I remembered in the past I tested positve for ANA but rheumatologist said it meant nothing, she seemed concerned (she's been my PCP for about 19 mo, the PCP I saw before passed away). She said she didn't know about that and ordered lab work and increased prednisone to 20mg a day. I called UW med ctr to see when I saw the rheumatologist and it was in 2007, I tested ANA positive w a speckled pattern and also tested positive for HLA-b27. I'm wondering now if I should've ever been given remicade? Or any biologic. I've been in so much pain my whole body still today wasn't much different then before increasing the prednisone. I was hoping for some relief from that short term. My PCP doesn't work Mondays so I hope I'll know more Tuesday and doing everything I can to distract myself from the pain so I don't go to the ER.

Thank you, I might go to the ER, what keeps me from going is thinking I'm not gonna die. I'm assuming, so is it an emergency? I feel like it in ways because I'm in so much pain and don't really have much quality of life. Scarred if I have lupus could my other organs be being damaged though. I have had some chest pain. I have pulmonary fibrosis but never had any pain from it except the lung biopsy to find out about it. So idk and the docs here don't know much, my last ER visit the doc actually asked me after looking at chest xrays " do you think its your PF or pneumonia?" Told him idk, I wanted to and should've told him you figure it out. He didn't give me antibiotics just sent me home and I did have pneumonia I found out after seeing my PCP three days later and she put me on antibiotics.

I live in a small town (30,000 ppl and you can only get here by plane or boat) and drug seekers have made things very difficult to get pain managed. Its a big problem here so anytime someone goes to the ER if they can't find what's wrong the person is labeled a drug seeker. I haven't been labeled but have a fear I will be and then I might not get the 3 Vicodin I can take in a 24hr period. Sucks ppl abuse medication and make it difficult for those that really need help to get help. I've had increasing stomach pain so I'll probably go. The other problem is this ER is kind of a joke, they sent me home w intususeption. I had to demand a CT from a NP at a Dr office here and wait 5 more days to get a CT scan and I almost died. After I had the CT as soon as I walked in my door the phone rang annd it was a doc idk telling me to come to the ER. I was mad to say the least. after being admitted the surgeon who sent me away from the ER came to the room I was in and said "I just wanted to come by and apologize" I looked at him w a glare and not a word came from me and he left. My daughter needed a blood transfusion, she has a rare disease called vasculitis, she was bleeding internally taking oral prednisone and oral cytoxan (chemo). They did her labs saw she needed a transfusion, but gave her 2 Tylenol w codeine and sent us home. Lucky she was allergic to codeine we found out because after we got home she couldn't breathe so we rushed her back and we were sent to another state for a children's hospital where they told me if she wasn't allergic to codeine she probably would've went to sleep and never woke up. So I'm scared to even get medical help bc of past doctors incompetence.

Does anyone know if I should not have gotten remicade because my ANA was already positive? Or has anyone been given remicade with a positive ANA before remicade?

Thank you, I'm pretty certain I should stop remicade, but GI doctors recommendation now is premedicate w prednisone the day before day of and day after. I'm really scared, I live in an isolated town and even the GI in another state is wanting me to continue even though I called and said my joints were stiff painful swollen and red that I could barely use my hands. I've been a guinea pig in the past and things never went good. Don't want to be a guinea pig again when it comes to my ability to not move. Last "guinea pig treatment" caused pulmonary fibrosis. They won't say it was the humira or cimzia I took but I'm pretty sure it was the cimzia. Cimzia had only been approved by the FDA 2 months prior to me starting it and the loading doses were messed up because of a pharmacy filling the continuation prescription not the starting one even though I asked for a consult and PCP's nurse incompetence. When I told the nurse I thought the GI nurse said it was more then one shot, she looked at the box what the pharmacy had put on there and just followed it didn't even tell doctor or make a call. Hard enough to get medical care, but when you live in a small isolated town the incompetence is horrible and your stuck w that doctor no where else to go, all the doc offices are not taking new patients unless the woman is pregnant.

So frustrated w medical "professionals" incompetence, if I wasn't suffering and haven't suffered in the past I might be willing to be a guinea pig. Though getting diagnosed with non specific interstitial pneumoninitis (one of many forms of pulmonary fibrosis) and it basically meaning my lungs were scarring and they don't have an answer except told me I'm lucky I have the sister of IPF idiopathic pulmonary fibrosis which there's no treatment for and most ppl die within 5 years of diagnosis. My sister type should respond to treatment, chemotherapy and high dose prednisone. After two years of getting high resolution CT scans of my lungs I finally only have to travel to go two times a year instead if six.

Thanks for letting me vent, I have no support. My "friends" have disappeared in the last 8 years. Parents and extended fam don't care. My husband doesn't even care when I cry because I can't handle the pain. I'm ready to give up I'm hurting so bad sometimes I wish I would go to sleep and not wake up.

I just wanted to say no worries about venting. I did read your post earlier and felt too tired to reply then, but I felt for you and still do. I do know what it's like to feel frustrated and angry at the incompetence/indifference of the so-called experts, and to have drug after drug fail. The whole thing is just utterly demoralising; so as far as I'm concerned you can vent until the cows come home.

I'm just wondering about one thing: has surgery been discussed at all?