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Rheumy response to joint pains

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Posted 3/2/2017 12:43 AM (GMT 0)
I've been getting increasing worse joint pains, and have been working with a rheumy for it. He's not really given any indication if he thinks he's extra intestinal from CD, an emerging autoimmune, or side effects of Entyvio. I tried methotrexate for 7 weeks and it didn't help and felt awful on it. So when I followed up a couple of weeks ago, he put me on Arava. I had an increase in bowel symptoms and stopped after 3 days.

I finally emailed to report what happened and this was the response. I feel so cared for.
"Message: Per Dr. O., "She has limited oral options. She has previously tried methotrexate, Arava. She would need to probably switch biologic agents regarding her underlying bowel disease as alternative options if she continues to have ongoing joint problems. This could potentially flare intestinal symptoms however."

So we would recommend checking back in with your GI doctor to see about other potential medications if you continue to have joint pains."
Posted 3/2/2017 1:35 AM (GMT 0)
I guess they didn't realize you were on Entyvio.

I have to run everything thru my GI so that, to me, is a given.

If it were me I would find a second opinion with a doctor who would work directly with my GI.

I hope you find help soon.

Clo
Posted 3/2/2017 1:44 AM (GMT 0)
I Agree with Clo, find a doctor that will work with your GI
My Rheumy also told me to go back and talk to my GI about changing meds. what helped though was that she apparently called him about it so everyone was on the same page and i didn't have to explain anything in relation to that when I went to my appointment.
Posted 3/2/2017 1:49 AM (GMT 0)
BAHAHA! I had something similar happen once. I had just moved and my new GI referred me to an OB for my RV fistula (just to make sure things were okay on that side). The PCP did an inspection, saw the seton, called in the OB to take a look, and they decided to send me for a barium test to track it. After that nightmare (awful story) where it didn't even work because my fistula was so low that the barium they were sticking up my bottom just blocked it so barium couldn't get in, the PCP calls me and leaves a message saying, "So after looking at your barium results, it doesn't appear that you have a fistula. If you still think that you do, we can refer you to a GI specialist who can do further testing." I didn't even call them back, I just ran away as fast as I could and found another OB who wasn't a complete freaking moron and actually cared about and remembered his patients.
Posted 3/2/2017 5:13 AM (GMT 0)
ugh sorry to hear about your encounter with the rheumy. I will be seeing a rheumatologist in july about my painful and swollen knees and hip joints. My pcp is sure its extra intestinal inflammation. I also have nerve pain with inflammation which is due to good ole crohns. Hope you get some answers and relief soon
Posted 3/2/2017 1:51 PM (GMT 0)
It's just time to find a new rheumy. He knows I am on Entyvio. I feel like this email is a I don't know what else to do with you type message.

Every time I am on biologics this happens. When I stopped cimzia the pains never completely went away. I know Entyvio isn't supposed to cause joint pain, but it's gotten worse as I've been on it. My GP thinks it causes an immune reaction, as my gut settles down then my immune system goes after my joints.

It's really frustrating. I don't like my GI and I don't see him being very helpful. When I saw him last he dismissed my joint pain and said I needed to be gluten free. I have done that several times, and it never impacts my joints.
Posted 3/2/2017 2:42 PM (GMT 0)
Has a rheumy ever had you get an ultrasound of your joints to see if there is active inflammation/damage? I know the previous one had wanted me to go for them but other things happened and that got bumped to the bottom of my list. My new doctor didn't mention this approach to me but it might be something for you to look into.
Posted 3/2/2017 9:59 PM (GMT 0)
Wow....

I agree. I think this doctor is in over his head and just does not have the skill set to help you get better. Very few doctors will admit to that although it would be so helpful if they did. The remark about Entyvio was sarcasm. Sorry...I just couldn't contain myself.

I dont know....I would see if there's a better GI. Find out before you go to him who else he works with...(They usually have a set of doctors they prefer you to work with) research all of them and start over. It's a time consuming frustrating job but well worth the effort if you can find a group of doctors you are comfortable with.

I hope you feel better soon.

Clo
Posted 3/3/2017 1:20 AM (GMT 0)
@Lab...no I've not had an ultrasound of any of my joints. Out of frustration a few years ago this rheumy sent me for an MRI of my knee. It was osteoarthritis, and PT helped. I have wondered why they don't try to see what my joints look like, but haven't ever asked him.

@clo...ha! Some well deserved sarcasm that I missed. smile The GI group I go to won't let me even have a brief meeting with another GI. They make it a huge hassle to switch. I don't have any viable options for other GIs. One group I used first had deplorable billing practices and the other doesn't really have any GIs with CD experience. Mine's competent, but I'll have to push hard to get anything out of him.

I'll summon up some energy to be a squeaky wheel over the weekend and see if I can get the GI to offer some options.

Thanks for the empathy and suggestions!
Posted 3/3/2017 2:33 AM (GMT 0)
I really disagree with those huge groups that doctors join. Other doctors that are then in the same group then refuse to treat you. They should make it illegal. The only work around I found was to utilize a new address and use the doctor I wanted that had a "satellite" office close to that. ..or the excuse that I wanted to see everyone so that they were aware of me and to make it so that I was comfortable with them. The issue is that then you have to deal with even more stupid incompetent doctors. Shameful.

Crossing my fingers and toes and sending positive energy your way.

Clo
Posted 3/3/2017 3:12 AM (GMT 0)
I totally agree. When I moved to this GI group last year, I tried so hard to get them to let me book with 2-3 GI's so I could interview them, and they flat out refused, and then told me if I wanted to switch doctors I'd have to call and speak to the office manager. I don't understand how that upholds the hippocratic oath at all, but what do I know. I foolishly want a doctor who cares about how I'm feeling and is actually willing to have a dialog with me about what's going on. I have such high expectations! :-P

Hopefully I'll make some headway next week. I'm too worn out this week to deal with the GI.
Posted 3/21/2017 4:22 PM (GMT 0)
I also have this issue every time I am on biologics. I have stopped each one because of severe joint pain. My GI is confused because there is no medical research to back up entyvio and joint pain, yet when they moved me to every 4 weeks- bam- I have joint pain out of nowhere and it hasn't stopped.

It is so hard to only want docs to care and to listen...I hope you were able to make headway.
Posted 3/21/2017 9:00 PM (GMT 0)
I've had similar struggles with multiple rheumy doctors. When I first started having joint issues in 2009, the rheumatologist I saw thought there was something going on and put me to methotrexate. I lasted nine months before stopping because there was little benefit for the side effects. Since then, the doctors I've seen have repeatedly said it can't be an inflammatory arthritis because the meds I have been on would have helped (e.g., prednisone, Remicade). Several other (non-rheumy) doctors have thought this absurd but the best I've done is get lots of pain meds, which I don't really want, for arthralgia. At this point, I have given up on working with a rheumatologist for my joint pain and just bring it up with my other various doctors.
Posted 3/21/2017 11:06 PM (GMT 0)
Thanks for sharing your experience vitaka. It helps to know I'm not the only struggling with getting help. Fortunately all the pains are down to manageable levels without extra meds. At my last Entyvio infusion the nurse said they had a few patients report joint pains, but then it went away after more time on Entyvio. I hope that's the case for me.

I'm glad my GP is always responsive, but like you said it's really just pain meds.
Posted 3/23/2017 2:11 AM (GMT 0)
Sparkle,

Gosh I am so sorry you are having these issues. I think the joint pain is difficult for our doctors to understand. I think that if there isn't a large "study" to relate information to doctors ignore it. I use to explain that if you have 1,000 single person case studies that indicate a finding or one single case study with 1000 that indicate a finding....the single case study does not invalidate single person cases.(all thing relative of course) If the doctor wasn't able to recognize the logic I changed doctors. We need doctors that listen, learn and believe.

I too have heard that if you give the Entyvio alittle extra time the joint pains ease up. I am crossing my fingers for you.

Hang in there,
Clo
Posted 3/23/2017 2:23 AM (GMT 0)
@junerainbow -- I'm sorry you are experiencing pain. It is so frustrating when docs say well there's no evidence it causes x. Well guess what, I'm your evidence! My joint pain is continuing to improve, so I'm hoping that it was an adjustment period for me on the Entyvio. Hope you can find relief!

@Clo -- Well said! I feel like they want to discount it, but I've found joint pain to have a greater impact on my quality of life than going to the bathroom 6+ times a day.
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