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Posted 2/21/2011 9:23 PM (GMT 0)
So its good new / bad news. Good news is that its not bone death, bad news is that it is crohn's arthritis.. I have body wide inflammation in all joints. The orthopedic confirmed that. He wouldn't do anything for me and said I needed to go to my primary or my GI. So I had an appt with my Primary and he ruled out Fibro and said he definitely agrees its Crohn's . He said I need to give the Remicade at the higher dosage more time and to go on neurontin . He would not refer me to a pain clinic. He thinks that they aren't able to do anything he can't do.

I really don't know what to think, what to do. I have my next Remicade March 4, after the infusion, I am scheduled to go to my GI and I will talk to him and see what his thoughts are.

It was weird.. the ortho felt bad he couldn't help me more. He said once my dr finds the right crohn's meds that I should feel better... he said it was a shame that I am in such bad shape. Why can't anyone help me???
Posted 2/21/2011 10:40 PM (GMT 0)
They need to refer you to a rheumatologist! A rheumy can provide better options. Inflammation in a joint causes damage and it needs treatment. It the REmicade is not controlling the inflammation then other things can be done. My rheumy has had to inject steroids into joints that were massively inflamed. This helped me get function back and reduce the pain.

Ask to see a rheumatologist - a good one!
Posted 2/21/2011 10:43 PM (GMT 0)
While its true that once the Crohn's calms down the arthritis should get better, its not right that they are letting you remain in pain until then. I have some joint issues and they definitely flare up before I have CD flares, but nothing to the extent that you do. I see a Rhuemy for mine, or at least I have in the past, its been a while since my last visit. Sorry, I can't remember, but you have seen a Rhuemy, right?

I think it is unreasonable not to refer you to a pain clinic. I would push your GI for a referral. Once your pain is at least at a tolerable level you can deal with life. But until then, it is hard to even face the day.
Posted 2/21/2011 11:43 PM (GMT 0)
I saw the rheumy at the mayo and he really didn't help. He tried the sulfasalazine and I was allergic, than he wanted to put me on prednisone again which I said no. I just got off of it finally.. so when I told him that he had to think about it and never got back to us. We can't seem to reach him. I was not impressed with the clinic.. the GI clinic has been wonderful but the rheumy.. not so much.

My GI won't refer me to a pain clinic, he said it has to come from my primary. I keep wondering if I need to switch the remicade.. maybe it isn't doing it for me.

sorry.. just incredibly frustrated tonight and sort of worried about the neurontin.. do I really want to try this? Is neurontin good for people with crohns arthritis... I haven't come across too many who have used it..
Posted 2/22/2011 4:27 AM (GMT 0)
I have been taking Neurontin since 2004. However, I take it to relieve the pain of my peripheral neuropathy. I do know others with spondyloarthropathy caused by Crohn's arthritis that take it.

If you decide to see if it helps with the pain, a word of caution. I don't know what dose he prescribed, but if it is anything over 100 mg, then consider upping the dose gradual. Most people find that they need to increase the dose gradually to minimize the side effects.

I take Neurontin 600 mg three times a day and I do NOT have any side effects at that dose. If I go over that, I get brain fog. Good luck. I hope it relieves some of your pain. Also, while prednisone is a drag, a short burst to tamp down the arthritis inflammation might help ion the long run. I have had to do this a couple times. My rheumy has me do 40 mg for 2 days, 30 for 2, 20 for 2, 20 for 2 and 10 for 2 and then I am off.
Posted 2/22/2011 8:54 AM (GMT 0)
Junerainbow,
I am on both Remicade and Neurontin. The remicade does help with the arthritis but when it gets bad, a narcotic med does help. I have peripherial neuropathy similar to Ides but Neurontin is also a regular pain med too. I take it in combo with Lortab 10 every day. I am prescribed my pain medication from my primary care and it has not been an issue. I do agree with Ides about starting your dose slowly. I am on 600mg 5 times daily as needed but I usually only take 2 at night and 1 during the day. If I take my full dose, I am loopy and emotional.
There is absolutely no reason that any of us should have to suffer from the pain of this disease. You did not ask to have Crohn's disease but you certainly are justified in asking to treat it. You have a chronic disease that causes chronic pain and will more than likely need some pain meds. There are so people on here that are able to do it without the pain meds and I commend them but I would never judge someone for seeking relief. You need to be your strongest advocate and if your medical plan is not letting you function, it is time to call your doctor and make them work for you.
Posted 2/22/2011 4:05 PM (GMT 0)
Thank you.. he did start me slow...100 mg 3x a day. I have not started it yet. I am mulling over so many things.

The Mayo rheumy really wants me to start again with the Sulfasalazine. He thinks that if I go super slow I can desensitize my body.
As for the prednisone, I know the drug has helped me but it was really wreaking havoc with my overall health. So honestly, even a short burst scares me.
I obviously have some decisions to make. I am trying to hold off until I speak to my gi...I really feel stuck.
one question, is Neurontin something you take every day for it to be effective? Its not a narcotic, right? I am kind of clueless when it comes to pain meds.. and my drs are really not good at prescribing different kinds...I have been stuck with vicodin, percocet, celebrex and the fentanyl patch. Now with Neurontin, I have never taken this.

Just one moment at a time..I do have to be a better advocate.. i kinda suck at it..thank you again.
Posted 2/22/2011 4:39 PM (GMT 0)
June,

I don't post much here but on this one I have to chime in just FYI.

"They need to refer you to a rheumatologist!"  Bingo to Ides !!!!!

My hubby has a 34 hx of Crohn's and 4 major surgeries plus fistula and abcess in the past.  He just had a major flare of arthritis  in his right foot an ankle.  After 3 days in the hospital, on antibiotics,  ortho consult, internal med consult and MRI he was sent home with dx of probable pseudogout.  Saw his own PCP who sent us to a Rhematologist and finally someone is willing to put him on preventive drugs instead of chasing fires and needing surgeons. Even hubby's own GI Dr. would only offer him Asulfadine which they tried many years ago.

So we are starting Methotrexate.  My opinion is to try a physician who is willing to be aggressive in treating you - the whole person. Crohn's is an IBD with arthritis  and osteoporosis  common extraintestinal complications of Crohn's.  No news to you I know. :-)

We also have experience with Rhematologist who was not promoting preventative meds.  Sorry the Mayo rheumy did not give you any comfort. 

Thank you for letting me share a bit here. Yes, please do become your own best advocate.

Kindly,

Kitt

Posted 2/22/2011 5:01 PM (GMT 0)
Thank you Kitt - I have been through so many doctors and I don't know where else to go, nor if my insurance will pay for another opinion. They are not happy with us already. I feel stuck.

but you are right.. you and everyone are so right ..
Posted 2/22/2011 7:49 PM (GMT 0)
I have Crohns arthritis.

For me it does not get better with Remicade or Humira and it does not get better when my tummy is under control.
It has been at its worst when my tummy troubles where at its best.

I take Salazopyrin(Sulfasalazine) 4*500 mg.

It helps but it does not fix the problem.
I still feel like I am 100 years old sometimes :)
Posted 2/22/2011 8:19 PM (GMT 0)
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.
Posted 2/23/2011 12:50 AM (GMT 0)
it helps a lot with the pain and movement. I think I would not be able to do anything with out it. I would suggest taking only half the dose to begin with to avoid side affects, ask your doc about it. It took over 3 months to start to work for me.
Best of luck
Posted 2/23/2011 6:08 PM (GMT 0)

It doesn't help any, but you aren't the only one with this problem.  My Crohn's has been in remission for close to 5 yrs but my arthritis has continued to progress, quite rapidly.  GI won't do anything about it, rheumy has exhausted all of her options (actually, just came up with another one last week, but it's the last option now).  She is going to send me to the Cleveland Clinic, if the Cymbalta doesn't help.

Yes, a rheumy will have many other options, but make sure they know how the meds will interact with your Crohn's.  I had to stop sulfasalazine because it bothered my stomach.  I've taken neurontin once for endometriosis and it made me crazy (I'd just start crying for no reason, etc.).  We've exhausted every med option because it either hurts my stomach or elevates my liver enzymes.  If you haven't tried other biologicals, I would definitely try that.  I understand how frustrating it is, but at least there are still some meds that you haven't tried out there...as far as e know, I've tried them all.  Be hopeful that there is a med out there that will work for you and keep trying until you've found it.  That's really all we can do. 

Posted 2/23/2011 6:23 PM (GMT 0)
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 anything. I have waited this long. I can't help but wonder if the remicade is doing this? I know I have had my ana's tested but could it still be caused by the Remicade? A question that will surely upset my gi... but oh well.

It is frustrating for all of us.. hugs.
Posted 2/25/2011 1:14 AM (GMT 0)
Okay just to add my two cents.... I've had extreme leg pain since my diagnosis of crohns and a prescription of prednisone. I've tried remicade and although helped my guts it caused the leg pain to get worse. I'm talking weird pain.... It wasn't until I started to question them "what is this drug doing to my body" that they finally listened and switched me to Cimzia. Then I was finally diagnosed with fibromyalgia. My rheumy is not sure what caused what. I'm now on Savella- the only med. specific for fibro- and have experienced great pain relief- FINALLY. I've tried Cymbalta Neurontin lyrica- you name it. The key was finding a rheumatologist that believed me and was willing to work with me to figure out what it was. The first one I went to told me to deal with it, after all the bloodwork came back ok. After a few months, I realized I could not live like that forever and would get as many opinions as it took to get me better. Good luck!!
Posted 2/27/2011 4:30 AM (GMT 0)
I see a rheumatolgist for my arthritis and he is the doctor that prescribe humira fro my CD. It not only helps the CD but has help quite a bit for the joint pains that I was getting. I still get some pain but not as severe. Recently I started entocourt and I have noticed that my joint pains have disapeared. Only hope it stays that way once I stop the entocourt. Maybe you could inquire about one of these meds.
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