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Fibro or Crohns arthritis

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Posted 11/22/2007 12:50 PM (GMT 0)
How can you determine if all the unbearable joint pain is Fibro or what they call Crohns arthritis? I have had every blood test, x-ray and bone scan and all my test come back ok so now the MD says well it has to be Crohns arthritis. The pain moves from joint to joint and really is bad if I do the same thing over and over for any amount of time like my job 8 hours of typing by the evening my wrists and fingers will not move without unbearable pain. The other thing that seems to really bother me is the cold and wet weather, I have to keep my body very warm and that seems to help a little bit. Any suggestions Fibro or Arthrits??????
Posted 11/22/2007 2:44 PM (GMT 0)
It is called enteropathic arthritis and I have it badly.  The Humira is helping my Crohns and my arthritis.  See a Rheummy doc

Good Luck

Posted 11/22/2007 8:26 PM (GMT 0)
My Rheumy actually diagnosed me with Inflammatory Arthritis and Fibromyalgia. So I guess I have both. Seeing a Rheumy is a very good idea.
Posted 11/22/2007 9:01 PM (GMT 0)
I all so agree that you need to see a Rhuemy and I would all so like to point this out my Rheumy told me that just because a person is negative does not mean they don't have arthritis.I to complained of severe joint pain and after telling me it was crohns arthrits I finally made my PCP send me to see a Rheumy and I do have RA,OA,AS so it's worth seeing one.I hope that you get to feeling better.
Posted 11/23/2007 5:35 AM (GMT 0)
My rheumy who was treating me for arthritis suggested to me that I maybe I had fibromyalgia. I became sorta irate (being a know-it-all nurse). I am never fatigued and have no muscle pain. You have to be very careful what diagnosis you are labeled with. I saw another rheumy at my gi doc's suggestion and he agreed with me. I have arthritis, 2 or 3 different types, and crohn's. Feeling better in my joints since starting humira.
Posted 11/24/2007 1:12 AM (GMT 0)
Sounds like my symptoms. I have classical Crohn's arthritis & that is EXACTLY how mine works. The moving from joint to joint is a classic indication. I'm thinking no Fibro, but CD. But I AM NOT A DOCTOR. & its possible to have both. Afterall, I used to believe I didn't/couldn't have any other arthritis but Osteoarthritis now rears its ugly head..

Matthew
Posted 11/24/2007 1:17 AM (GMT 0)
yeah my joint pain got better with mtx, but I still have an issues with muscles
Posted 11/24/2007 8:22 PM (GMT 0)

 VIEW IMAGE   Posted Yesterday 2:52 PM (GMT -7)    VIEW IMAGEVIEW IMAGE
Hello Everyone!

   I am new to the board, but am at a loss for what to do...I started Remicade infusions in September (due to Crohn's Disease that wasn't responding to other drugs like Entocort, Pentasa, Prednizone, etc. I have had 4 now, and they are cancelling my 5th due to a reaction to the Remicade. During the last infusion, I had a horrible reaction, just felt like I was on fire, burning up all over, and felt like I would pass out...like everything was going backwards in a tunnel. They stopped, flushed with saline, and gave me enough benadryl to kill a horse. That's been a month ago. (Four week ago almost to the day) Now suddenly, my Liver Enzymes are through the roof, and I have excrutiating pain in every joint I have it feels like. I don't think recovering from a hysterectomy was this bad. I can't hardly use my hands at all today. Every turn of my wrist, or strike of a finger just feels like I'm going to break a bone. My neck (trouble swallowing/hurting, shoulders, hip, elbows, ankles, you name it, even a severe toothache. I've read people say they had trouble even going to the bathroom, I can fully understand. Trying to put clothes on is horrendous! I have a Rheumatologist, and a Gasterologist working with my primary doctor. They are doing the Lupus test, and the Rheumatoid test, as well as the hepatitis tests. I am positive now that it is a reaction to Remicade! What can I do??? Ugh! This is soooo painful, and they say because of my liver problem not to take anti inflammatory meds, aspirin, etc.

Thank you in advance for any response...I am at the end of my rope! I know I'm not alone, but sometimes it feels so lonely out here!

Help!

Diva

CD (Illium),

Diagnosed 2/07. Symptoms for 20+ years,

Barretts

Hiatal Hernia

TMJ

Currently having problems with liver enzymes, off of most meds for CD.

Posted 11/24/2007 8:43 PM (GMT 0)
Hi Divafreak Welcome to HW and we are glad to have you .You will find lots of support and caring here, and it is great to not be alone. I am glad they are testing you for the different things .Sounds like you are getting some help with the GI and Rheu. Usually people take tyneol when on Rem. Sure hope you get some results soon. You could be having serem sickness from the Rem. Let us know how it goes. lol gail
Posted 11/24/2007 8:51 PM (GMT 0)
Thank You! I only hope that they can get this figured out soon. I'm pretty confident that it seem to be a serum reaction. I am worried, as they have taken me off of most of my meds for Crohn's now, due to the liver enzyme problem. Just don't want things to get any worse...LOL As you said, I will let you know how it goes...no pun intended! ROFL...
Thank you for the response.
~DIVA~
Posted 11/24/2007 9:02 PM (GMT 0)
Divafreak,

I had the same reaction to Remicade, it was finally decided it was a serum sickness. Some doctors consider it a Lupus-like syndrome, no elevated ANA.   It took months to finally dissipate.  The only thing that really helped me was Celebrex. 

Now almost a year later I'm having the same effects, but this time I think it's the 6mp.  I've been doing a lot of research, and it looks like there's a certain Peripheral arthropathy (arthritis in peripheral joints) that is considered "Type II, a polyarticular arthritis mainly affecting the small joints of the hands (along with more than 5 other joints at once).

This type of arthritis can be from treatment side effects which may include the effects of corticosteroid withdrawal, osteonecrosis, AZA (6mp) induced arthropathy and infliximab (Remicade) related lupus-like syndrome." 

Posted 11/24/2007 9:11 PM (GMT 0)
Hi Diva Enjoyed your pic. thanks. I know I was on REm. and Imuran and now only pred. I am sure they will get your meds straitened out soon. lots of love gail
Posted 11/25/2007 4:31 AM (GMT 0)
Thank you all for the replies. As I said on the other thread on this board, I am having so much pain. Can anyone tell me what they have prescribed to you to use for it? And does anyone know of something I could take for the pain that won't affect my liver in a harsh way? (I know, that's almost unheard of...) I have a feeling that it will be months before this subsides, and anti inflammatory drugs are not an option now.
Posted 11/25/2007 4:38 AM (GMT 0)
I know I have arthritis, I've been told I probably have rheumatoid arthritis. No one's in a huge hurry to get me diagnosed because they can't do anything for that that they aren't already doing for my crohns. What helps me the most with pain and stiffness is a hot bath, or heating pad. Cold, also, makes me stiffer and all that.
Posted 11/25/2007 4:55 AM (GMT 0)
I started taking prednisone and lortab before remicade and now since stopping it. Hoping the humira kicks in soon [it's been 5 weeks] so I can wean. The joint pains were awful and I also could hardly get dressed. What worried me most was getting a permanant stiffness or deformities in my joints. My baby finger is crooked now at the joint near the nail. I also couldn't turn my neck while driving which can be pretty hazardous. Us crohnnies aren't supposed to take much besides tylenol otc for pain because it can cause flares. My doc wouldn't even prescribe celebrex. I feel better and am taking less lortab now, only 1 or none, for the past week.
Posted 11/25/2007 3:49 PM (GMT 0)
You can take Celebrex, if you have CD. I take it, but I've never been really impressed with it. I've taken many NSAIDS. Some caused D & GERD for sure. NONE have caused my CD to flare. Your Doc needs to learn a little more about arthritis meds. Is he your GI?

Matthew
Posted 11/25/2007 4:10 PM (GMT 0)

Divafreak said...
Thank you all for the replies. As I said on the other thread on this board, I am having so much pain. Can anyone tell me what they have prescribed to you to use for it? And does anyone know of something I could take for the pain that won't affect my liver in a harsh way? (I know, that's almost unheard of...) I have a feeling that it will be months before this subsides, and anti inflammatory drugs are not an option now.

You could take steroida, they say it should help the pain but it didn't for me.  I took Celebrex which helped more than anythiing else. It's supposed to be one of the safer drugs for IBD, not sure about the liver.

You really need to have your HACA levels checked, the test is called the Prometheus Infliximab HACA test.  Some patients (13%) develop low titers of HACA which can be treated with steroids or 6mp/Imuran.    

Have you ever taken this drug in the past?  That's usually a sign that you're having a delayed hypersensitivity reaction which are cause by very rapid induction of very high titers of HACA, this happens in about 25% of patients who have taken the drug previously.  These patients should not receive subsequent infusions because the high-titer HACA interfere the the TNF binding capacity of Remicade.

I would ask for the test, and make decisions from there.  In the mean time, pain management is top priority, but I think that when it gets this bad, nothing's going to work 100%, and the only thing to make it go away is stopping Remicade, then it can take months. 

Posted 11/26/2007 2:31 AM (GMT 0)
I have been thru the same thing, having to come off Remicade then the severe joint/muscle pain. I have seen a Rheumy and he has tested me for everthing possible, bone scans and x-ray only for all them to be negative so now the gastro and rheumy md decided it has to be Crohns arthritis, but I totally believe it was caused from the Remicade. It has been over a year and I am just getting to where the pain is not as often but the only thing that has helped me deal with the pain somewhat is a muscle relaxer before bed and darvocet for the pain. I take Advil during the day and also take Prilosec to protect my stomach lining from the Advil. Vicious cycle!!!! I have also found that heat relieves the pain such as hot shower and I live in the midwest and it is starting to get cold so I have to be sure to dress warmly and I use a heating blanket at night. I still have not found a way to get completely rid of it but it does seem to be getting a little better slowly. I am not able to take the Humira, had reaction at the injection sight each time so stopped after 3 injections. It would be nice to hear anybody elses suggestions to deal with this annoying painful aches in the joints and muscles.
Posted 11/26/2007 3:36 AM (GMT 0)
Some people take coral calcium for arth. problems haven't heard anyone on here suggesting it or taking it though. Electric Body massagers might help .Going to a therapist to help deal with body problems. Has anyone tried one of them ? When my shoulder was frozen I went to one she was very good and exercise helped it alot. Does excercise releave your pain the therapist can give proper excercise. Also suggest that as soon as pain starts try to releave pressure by using a crutch .This helped me and the pain was of shorter duration because of using it. The only other sugeestion would be vitamins I am reading about vitamins now just seeing what they have to say about different diseases and what Vitamins help although a person has to be careful with some vitamins that they don't take too much .lol gail
Posted 11/26/2007 4:37 AM (GMT 0)

Matthew said...
You can take Celebrex, if you have CD. I take it, but I've never been really impressed with it. I've taken many NSAIDS. Some caused D & GERD for sure. NONE have caused my CD to flare. Your Doc needs to learn a little more about arthritis meds. Is he your GI?

Matthew

My internist suggested it and told me to check with the GI. He said not now ( I was on so much motrin for over a year with B12 def problems and  it really chewed up my stomach and duodenum) mainly because he wanted me to see a new rheumy, who then started me on humira. I am thinking that now maybe I should start taking celebrex and start weaning from the pred. I take aciphex for the GERD. I first have to find out what's up with my liver too. Diva, what about tramadol/ultram?
Posted 11/26/2007 12:36 PM (GMT 0)
They have put me on Ultram ER now. I am taking the day off, as I am so stiff, and hurting everywhere! This has got to go away....I am teetering on that ledge of wondering if I am better off, or worse off by seeking treatment for CD. I know it has to be treated, but my body is in such bad shape now because of it! I feel like I have aged 30 years! Oh how frustrating...I am sure that alot of you have been right where I am now. I am going in for an MRI on my back, and joints. I have had the Pirometheous test. That was one of the factors that determined Chron's, along with a CT Scan, and capsule endoscopy. I'm going to see if they can give me something for the constant aching. I have tried Ultram ER, it doesn't seem to take the joint pain away. Thank you for all of your advice! It is so good to know your not alone in this battle. I am losing hair....anyone else?

 

Posted 11/26/2007 2:40 PM (GMT 0)
That definately sounds like the lupus like syndrome that can happen with remicade. I would have your A.N.A. checked (mine was elevated after remicade). The only thing that helped me was MTX,but I don't know if you can do that with liver problems.
Posted 11/26/2007 3:06 PM (GMT 0)
Diva,

This is a different Prometheus test. It's specifically to find out if the antibodies to the Remicade are too high and are causing your pain. It's frustrating to me that doctors give this medication but aren't aware of the adverse reactions or the test available to see if you should continue taking it.  You should have your ANA levels checked (for Lupus) and also your Infliximab HACA levels checked for serum sickness. 
Posted 11/26/2007 3:18 PM (GMT 0)
My rheumy's office called, and my ANA test came back positive. She said the Lupus was negative, but that they are testing me for hepatitis. This is all so confusing to me...UGH! I go for an MRI today @ 1:30. I'm trying to find out now what I can take for pain...this is unbearable! But of course, you all know this,  what makes it bearable is knowing that somewhere out there, someone is going through the same thing....Don't you wish that some Dr.s would have to take some of the medicine that they prescribe? I wonder about Remicade...seems like there is alot of negative things out there about it....you know?

 

Posted 11/26/2007 3:26 PM (GMT 0)
In the meantime I had a fentynal patch that I used. But yes it takes awhile to get better.

I know that is seems weird to get sicker from a medicene that is suppose to help, but the trial and error process is what happens for us, because this is such an individualized disease.
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