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Crohn's Disease Forum » Extra Intestinal Manifestations » Arthritis » Alternatives to Prednisone for Enteropathic Arthritis?


 
10-16-2011, 01:53 PM   #1
Mountaingem
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Alternatives to Prednisone for Enteropathic Arthritis?

Please everyone I really need some help. I have been suffering through the worst bout of arthritis-I can't get up on my own, and can barely walk. I am already on Remicade, and the doctor keeps putting me on pred.

The last round I had dramatically raised my blood pressure. I seriously do NOT want to go on it again.

Does anyone know of another therapy that isn't like pred? I read about Doxycycline, which is an antibiotic, as a treatment, but would that interact badly with the Remicade?

I am fed up with my Rheumatologist's "Let's see if the Remicade will kick in" stand. Any advice guys would be greatly appreciated.
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10-16-2011, 03:02 PM   #2
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Joint pain sucks I know, but maybe you havent been on Remicade long enough? How long have you been on it?
10-16-2011, 03:46 PM   #3
Mountaingem
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I've been on it for almost two years. It worked great but then I got an infection last spring, and I had to go off of it for two months. That brought on the mother of all flares, and they increased the dosage. She can increase it once more, but she's being conservative in doing it.
10-16-2011, 05:53 PM   #4
David
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Hi Jeanette,

I'm sorry to hear you're hurting so much *hugs* to you.

1. I've been going to a doctor (actual MDs do it) for prolotherapy for my costochondritis and it has made a world of difference. Mine mentioned that he treats arthritis with it all the time and has fantastic results. However, I have no idea if it would work for enteropathic arthritis since that's a rather specific beast. But if you're interested, start here.

2. As we all know so well, CD leads to malabsorption which leads to vitamin and mineral deficiencies. I'm sure people are getting sick of me talking about it, but as I'm researching these, arthritis is mentioned all the time in conjunction with specific vitamins and minerals. From boron to sulfur, deficiencies are implicated in various arthritic conditions. While we're far from done, the information is pretty well sourced if it piques your interest at all.

I wish I could offer more

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10-16-2011, 08:14 PM   #5
Mountaingem
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Thank you David! You are so awesome, and this forum is lucky to have you! I really enjoyed and benefitted from the work you've done about supplements-I was motivated to ask my doctors about these deficiencies and took blood tests, which showed I'm deficient in most everything, but the worst were Potassium, Selenium, B-12, Calcium and Magnesium.

Since I've been taking taking these supplements I've slept better, felt more relaxed, had more energy, and have overall better health, so I can't thank you enough for providing this for us!

I've never heard of prolotherapy; but I read up on your links and I am definitely interested, I'll call my doctor tomorrow and see what she thinks about this. I'm going to do more research on it and its effects on enteropathic arthritis as well; I'll post my findings as I go along.
10-16-2011, 08:41 PM   #6
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Awwww, thank you. It makes me so happy to know the vitamin and mineral info is making a difference. YAY! You've inspired me to double down my efforts Out of curiosity, when you brought up the idea of deficiencies to your doctors, were they receptive or did you have to push? And when the results came back, what did they say?

As for polotherapy, hahah, well, I'll be very interested to see what your doctor says. While it's done by MD's (I know a couple states allow accupuncturists to do it as well) I think it's considered alternative and certainly not taught in medical school. I've talked to a couple doctors and PAs about it and each looked at me with blank stares as they had never heard of it. The PA is a convert now as she got it done on an old wrist injury and has had wonderful results.

You may want to check out some YouTube videos about it. MDs there show how it's done and explain the theory behind it as well.

*edit* I did just read that it isn't effective for Rheumatoid Arthritis so I'm thinking EA may be out too I'm so sorry if I got your hopes up and it's a no go... I should have asked my doctor first.
10-16-2011, 09:00 PM   #7
Mountaingem
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When I brought up the deficiency, my doctor readily agreed. I think this might be due to three reasons (1)because my primary care physician is a Internal Medicine physician, so she's accustomed to dealing with a wide range of autoimmune diseases, (2) because my small intestine is very scarred from years of Crohn's, and (3)I've had deficiency problems before, esp from near constant prednisone use.

I'm almost positive if my doctor was a GP the testing would've beeen completely dismissed. Even my GI doctor would have been resistant, sometimes I think they don't like us coming across something they have missed, and resent it.

No worries about the prolotherapy David; it can't hurt to mention it and the worst they can say is it won't work-I feel like I've got nothing to lose, so it can't hurt to ask. At least then we'll have a definite on whether or not it would be effective with EA.

Thanks again David for your help, and I'll keep everyone posted on how the conversation with the doctor goes.
10-17-2011, 07:56 PM   #8
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Brandon is on Remicaid but his rheumatologist prescribes Methotrexate in addition, for two reasons. First to treat the arthritis and secondly to prevent a build up of antibodies against the Remicade. Both the CD and arthritis is in remission, however about a week before he gets the next remicade infusion he gets mild symptoms back.
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10-17-2011, 08:27 PM   #9
Mountaingem
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Yes, I take both too. I'm currently on 18 ml.
11-18-2011, 12:36 AM   #10
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http://www.spondylitis.org/

This website has a lot of information about the different types of inflammatory arthritis conditions and has an exercise video that is supposed to help, though I haven't purchased it yet.

Is the pain in the SI joints? They are the dimples right above your cheeks. It so, you may want to have your doctor revisit your diagnosis. The exercises are supposed to be very helpful for pain control and maintaining mobility. I am hoping to order my video soon! Sometimes the pain in my upper back is more than I want to bear. And the crackling in my neck makes me crazy, but I can turn my head now that I am on Humira.
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07-10-2013, 04:52 PM   #11
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Hi
I have Enteropathic Arthritis, and I find that Budesonide works the best,
I start off with 3 for the first week, then 2 for 2 weeks then 1 for 1 week.
Although, prednisone works better as far as "energy" and no "pain"...but
the high BP and weight gain sucks. I'm not in a hurry for Humira.
07-11-2013, 12:15 AM   #12
Mountaingem
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Hi reeree!

I have taken Entocort for small bowel flares, it did not do much for my joints. In the end I tried Humira which didn't work and allowed a fistula to start, so I went on Remicade and Methotrexate. It's not perfect but it is better. There are a few new drugs out on the market now, so when I see the Rheumatologist at the end of the month I'm going to see if I can try one of them.

Pred totally sucks. My doc said it can be just a problematic as the biological. In my case I ended up with two fractured hips due to thinning bones.
07-11-2013, 06:20 AM   #13
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Hi
Thanks for the info. I'm in between my Rheumy and Gastro and not
sure which one should be treating me. I started off with ReA-then
the Crohn's shows up. I don't have a diagnosis of Enteropathic Arthritis
just yet, but I'm 100% sure it is-Rheumy is waiting to see what's going on
with my left sac joint (showing fluid around it). Not so happy with my Gastro
putting me on Lialda when I'm allergic to aspirin-make's me think he doesn't
know how to treat the problem.
07-11-2013, 06:55 AM   #14
afidz
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Jeanette- I am sorry you are feeling so crappy, do you think its possible the Remicade just isn't effective anymore?
I am in the process of being diagnosed with EA, and your the first person on here that I have seen mention it so I was a little curious about it. How did you get DX with it? Where do you feel the most pain? I feel like my hips are trying to break free from my body in a very violent way, honestly the most painful thing I have ever experienced (and thats including all the Crohn's and Hernia crap)
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01-18-2014, 06:59 PM   #15
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Has anyone with severe arthritis found any relief? I think my intestinal stuff is ok but my joints have been in severe debilitating pain for over a year now. Mountaingem, I see that your initial post on this thread is from 2011. Has anything worked for your arthritis?

For most of 2013 I could barely walk even with a cane and was in horrible pain all day everyday. I've been on predisone for 6 months which has helped so much, but I need to get off of it since it's not good to be on it long term.

Been taking Methotrexate for 3 1/2 months but I don't think it's really helping.

Has anything helped your joint issues? My intestinal stuff seems to be ok, but like I said the joints are crazy painful and immobile. I need to find something that works because I want to walk normally again!

Thanks for your help. Hope everyone is doing well.
Sigh
05-13-2014, 05:53 PM   #16
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Sigh I hope you found something that helps, I am in the same boat
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05-14-2014, 04:32 AM   #17
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So you have the arthritis really bad too?

So far nothing has helped. I tried methotrexate, LDN (low dose naltrexone), and sulfasalazine, as well as a hundred supplements. The only thing keeping me somewhat functional is 20mg of prednisone a day.

I start humira tomorrow. Excited!
05-14-2014, 07:33 AM   #18
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Take a look at this article and see if it makes sense to you.

It involves Mycoplasma and arthritis. I believe at least one strain of a Mycoplasma is a major player in my Crohn's.

http://www.thyroid-info.com/articles/brownstein.htm

Dan.
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06-19-2014, 05:13 PM   #19
Jajabinks
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So you have the arthritis really bad too?

So far nothing has helped. I tried methotrexate, LDN (low dose naltrexone), and sulfasalazine, as well as a hundred supplements. The only thing keeping me somewhat functional is 20mg of prednisone a day.

I start humira tomorrow. Excited!
How's Humira working for you?
06-20-2014, 12:27 AM   #20
Sigh M.
 
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Humira is amazing!!! I have had 3 shots so far, and for the first time in over a year and a half, I'm able to walk normally, without a cane! I swear I started feeling the effects the very next day, and every day I feel a little bit better. People no longer are asking me if I got into a car accident. I'm in the process of tapering off of 9 months of heavy prednisone, and I feel great! I haven't had any side effects whatsoever.
I'm so happy! I feel like I'm getting my life again after it was taken away from me for such a long time.
06-20-2014, 03:14 AM   #21
Jajabinks
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Humira is amazing!!! I have had 3 shots so far, and for the first time in over a year and a half, I'm able to walk normally, without a cane! I swear I started feeling the effects the very next day, and every day I feel a little bit better. People no longer are asking me if I got into a car accident. I'm in the process of tapering off of 9 months of heavy prednisone, and I feel great! I haven't had any side effects whatsoever.
I'm so happy! I feel like I'm getting my life again after it was taken away from me for such a long time.
I am so happy for you. Trust me, i know the feeling. My life has been taken away from me too. My relationships are suffering n I can barely function as a mom. It all feels so surreal. Just last year I was up n about even with Crohns. This arthritis changed my life drastically this year n I am not sure how I am going to live with this forever! My problem is in my hips, spine, shoulders, ribs, neck, fingers and wrists! Nuts right?
06-20-2014, 03:17 AM   #22
Sigh M.
 
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what are you taking/doing for the arthritis? have you tried humira? i've tried so many things, both standard medicines and altrenative treatments, but humira is the only thing that has done anything except the prednisone. oh, and moving to the dry desert in arizona helped but that's not an option for everyone
06-20-2014, 03:20 AM   #23
Jajabinks
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I'm on prednisone 35mg n it isn't touching my pain. I'm being treated for an indeterminate TB test til July then I'm trying Humira. I'm really nervous about it. How have your energy levels been? Does this ever feel like a bad dream to u?
06-20-2014, 03:21 AM   #24
Jajabinks
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I tried supplements n light exercise.
06-20-2014, 03:33 AM   #25
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My life became a nightmare up until 5 weeks ago when I started Humira. I was in so much pain for a year and a half. A lot of the time I could barely walk even with a cane. I had to quit my job, my girlfriend of 3 years left me because I couldn't move to New Orleans with her, and I had to move across the country in with my parents in Arizona. I lost so much, and so much time, and so much money.

My energy levels were destroyed for all that time. It caused me so much fatigue that I did so little during all that time, and even when I had energy I was in pain and didn't want to do anything. Last summer, before I was on the prednisone (which helped me a ton but not completely), I was sleeping at least 12 hours a day, and for the time I was awake, I laid in bed most of the time. It was really bad. The prednisone made it so I could walk in general, but I was still really limited and the pain would fluctuate like crazy from day to day.

I was also afraid of the Humira, which is why I went through such great lengths to try everything I possibly could before going on it. But now I wish that I would have known that nothing else worked and that I could have started Humira a long time ago. But now I'm very grateful for this amazing drug and I feel absolutely wonderful.

Due to the arthritis and long term steroid use, I have pretty bad osteoporosis (at age 30) and some of the bones around my joints have warped a bit, so my body will never be the same way it was before, especially my wrist, ankle, and possibly knees have permanently lost some of their range of motion, but I am happy to be able to walk mostly normally again. I strongly encourage anyone to try Humira before their joints get permanently damaged like mine. But like I said I am happy beyond words right now.
06-21-2014, 04:01 PM   #26
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Thanks for sharing your experience with Humira Sigh

My Rheumy has been trying to get me to try it for the last 6 months & I keep refusing
I was just dx'd a year ago after being told a zillion years ago I had colitis
Took massive amounts of pred over the years

Now they're saying Crohn's & the mtx injections aren't doing anything for my joints
I kind of flipped my lid when she wanted to add Humira to this witches's brew of meds I'm taking

All I have to lose at this point is some of this miserable pain, so she will most likely be quite surprised when I see her next month & agree to give it a try

Hope you're still getting relief
06-25-2014, 01:56 PM   #27
Jajabinks
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Sigh I am so happy things have worked out for you!

Droopy what parts of your body are being affected?
06-25-2014, 01:57 PM   #28
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Droopy I was just diagnosed last year February and I am pretty upset at how fast things have unraveled. It's kind of hard to see the light at the end of the tunnel sometimes.
06-25-2014, 04:01 PM   #29
Droopy Drawers
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Sigh I am so happy things have worked out for you!

Droopy what parts of your body are being affected?

Lower back, hands heels, ankles & shoulders

Rheumy keeps measuring my chest expansion when I breathe
Diagnosed with osteopenia 2 years ago
06-25-2014, 04:12 PM   #30
Jajabinks
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Have you found any relief?
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